Friday, December 31, 2004

What is means to me ...

"Some luck lies in not getting what you thought you wanted but getting what you have, which once you have got it you may be smart enough to see it is what you would have wanted had you known." - Garrison Keillor

This quote has meant a lot to me this year. Earlier in the year when I found it on the internet (attached to a friend's signature at my Special Needs Support Group message board), I printed it out in big, bold letters and posted it to the door of my office, where I was sure to see it each day. I started our year end Holiday Letter this year with this quote, but failed to really expand on what it truly means to me.

I certainly don't feel fortunate or lucky to have a handicapped child like Jenelle. At times it is a burden that I think few truly understand. On one hand, the worry, the medications, the therapy get to be too much. There are time I wish she would just hold her bottle on her own, or sit up... even just chew food! Every day is a battle - a fight against seizures, a hope for improvement, for a small smile or laugh. This is certainly not a life anyone would choose on their own.

However, when you look at the bigger picture, how her life has changed mine and those around her, I do feel lucky. Every parent wants their child to be the best, to do things they never did, and to enjoy life to the fullest. How many can honestly say their child makes them a better person? Not because their child is successful, bright, or wealthy. My child makes me a better person because I now have more patience, I now accept and see disabilities differently, and because of her I've had the opportunity to meet other parents who are just as strong as myself and even stronger. Jenelle makes me a better Mom, and a better human being.

"it is what you would have wanted had you known"... Had I known my child would have faced such difficulties in this world at such a young age, I'm not sure I would have chosen to keep her. Thinking of having more children spreads fear in my body - a fear of re-living the hurt and disappointment of mourning the loss of the "perfect" child. But knowing what I know now... of course having a handicapped child is what I would have wanted. Who wouldn't want a child that made you stronger, made your a better human, and made you love more than you ever thought possible? Isn't that what every parent wants? I think that is what I have, even though getting there was bittersweet.

Best wishes to you all in the coming New Year! Let's hope you are lucky enough to realize that what you have is what you would have wanted anyway.

Friday, December 24, 2004

Merry Christmas!

"... and visions of sugar plums danced in her head!" Posted by Hello

Wishing you all a very Merry Christmas and a seizure free New Year! ;)

Thursday, December 23, 2004

Christmas comes early!

Christmas has come early for the Curran Family… and it came in the way of giggles, looks, hints of smiles and fewer seizures! Jenelle is doing really well on the Felbatol, and I'm hoping she remains "side effect" free. Her blood draw went well with only one poke, however Jenelle didn't stop crying for at least a half hour after. I had her blood done just prior to the lab closing for lunch, and once Jenelle started crying, the phlebotomist told me to "take as much time as she needed" to calm her down. About 20 minutes later, the same phlebotomist came to me and was embarrassed to say, "I'm sorry, we have to ask you to leave now so we can lock up for lunch!" They felt horrible as I had to walk out with Jenelle still crying hysterically. By the time we hit the car, she had cried herself to sleep. As heart breaking as this sounds, I see it as an encouraging sign that Jenelle is becoming more aware of things, and her reactions are more age appropriate!

In the last week, we've noticed that Jenelle is really starting to "look" at things, especially at the person who calls her name. We are seeing hints of a smile, and last night I got some giggles as I played with her before bedtime! Today, her teacher told me that during "circle time" they sang "Old McDonald", and Jenelle repeated the "E-I-E-I-O" part! The teacher asked the assistant who said it and they were all amazed that it was Jenelle! Her Christmas Pageant was adorable, but her costume was quite hot. After the program, Jack told Jenelle that "she did a great job!" At times during the songs, it seemed almost as if Jenelle was really trying to sing!

So lots of "good" news to report for a change - like I said, Christmas has come early! We wish you all the best during the coming days, and thank you again for your continued prayers for Jenelle! As promised, here are some photos…

Our little ginger bread girl! Posted by Hello

Wednesday, December 15, 2004

Update on Felbatol

Just wanted to send out an update on Jenelle since starting Felbatol. The good news is that we no longer see the Atonic/Absence seizures that we were seeing before starting Felbatol. The bad news (maybe) is that we are seeing some new "tonic" seizures as well as her very old "myoclonic" jerk seizures we haven't seen in months. I'm trying to stay optimistic in that we didn't get an instant "no seizure" response like we usually do when we start a new drug (the "honeymoon" phase I described before where we think we've found the miracle drug, only to have her seizures return.) I'm hoping that as the dose increases her seizures will improve even more! The new "tonic" seizures are not fun to see (what seizure is fun to see?) Unfortunately, Jenelle stiffens during this seizure (every muscle in her body contracts), and she appears to either stop breathing, or hold her breath. I guess the only bright side about the "tonic" seizure is that it doesn't last long.

We finally got the "drop dead" letter from our HMO about the Ketogenic Diet at Huntington Memorial in Pasadena. I've learned since filing the appeal that Huntington Memorial does not accept our insurance, so our request was really asking them to make a private contract for Jenelle - A long shot to say the least! They did approve UCLA, and a "second opinion" with Children's Hospital Los Angeles. I've heard from other parents (and doctors) that CHLA is an excellent hospital, but I know little about their Epilepsy program. I'm told it is excellent but unfortunately falls in the shadow of UCLA's Epilepsy Program (which is the best on the west coast!) I'm checking with UCLA to see if since the passage of Proposition 61 they may be accepting new patients in their Ketogenic Diet program, and am still waiting to hear. I'm not sure whether or not we'll do the second opinion at CHLA - it all depends on UCLA, since we are already in the hands of the "best". Then again, it couldn't hurt to get a fresh opinion. I am also waiting to hear from UC San Diego about the records I sent last month. I'm sure as we approach the holidays, fewer of my phone calls will be returned! ;) We continue to keep up the good fight, and we keep jumping through those hoops!

Finally, some good news to report! Regional Center approved a 3rd day of therapy for Jenelle at the Blind Children's Learning Center! Starting in January, Jenelle will receive therapy in the mornings on Monday, Tuesday and Wednesday! I spoke with Jenelle's teacher today, and she told me that since the beginning of December, Jenelle has made some drastic improvements and appears to really be seeing things, as well as holding her body better in the up right position! I'm hoping this coincidence is from the new medication! This coming Friday, Jenelle will be a ginger bread man in the school's Christmas program. Unfortunately, after the program, I'll be taking her for her routine blood test (no fun!) Hopefully I'll have some cute photos to share with my next update (and I don't mean photos from the blood test!)

Thanks again for thinking of us and for keeping Jenelle in your prayers! I'll keep you posted!

Tuesday, December 07, 2004

Jenelle is a turnip!

Poor little Jenelle is a turnip - As in you can't draw blood from a turnip!

Dr. Shields predicted that Jenelle would let us know if weaning her from Vigabatrin was a good thing. Last Thursday was Jenelle's last day on Vigabatrin, and the first time we ever used her Diastat (emergency rectal valium to stop out of control seizures.) As we were getting ready for daycare that morning, I knew she was having many seizures. On the drive to daycare, I realized that whenever Jenelle was quiet, she was seizing. Then I also realized that she had had 5 seizures lasting over 5 minutes in one hour. As I was explaining everything to her daycare provider, we realized that during our 5 minute conversation, she had also been seizing the whole time (and hadn't stopped), so I administered her Diastat and called UCLA. The Diastat did its job and kept us from going to the emergency as it gave Jenelle some much needed seizure relief. It didn't stop her seizures, but they were lasting mere seconds as opposed to minutes.

Dr. Wu was the Neurologist that returned my call as was the same doctor that treated Jenelle in the hospital last April, and had written the report on her last EEG. Dr. Shields had already left for a huge Epilepsy conference that apparently "everyone" was going to attend! Dr. Wu pulled Jenelle's records and had Dr. Shields notes in front of her as well as the last EEG. I explained that Jenelle was having many 5 minute "myoclonic" seizures. Dr. Wu asked me to describe what Jenelle was doing during the seizure, and I explained what I was seeing. Dr. Wu then explained that what I was describing did not sound like a "myoclonic", but rather like an "atonic" seizure. OK - Here is your "crash course" in seizures types: "Myoclonic" seizures are "jerk" type seizures (literally when holding Jenelle, you'll feel her body jerk when having a myoclonic), "Atonic" seizures are considered "drop" seizures and usually the body "drops" like with a head drop, and finally, "Absence" are what used to be called Petite Mal seizures, and it is where the person becomes limp and unresponsive. Apparently, I've been mis-categorizing Jenelle's seizures when talking to Dr. Shields. After the clarification, I began to realize that we really haven't seen the myoclonic jerks since Jenelle reached the max dose of Topamax, and that mostly her seizures now are Atonic. Dr. Wu said that Dr. Shields had written down a drug he wanted to start, but that with our clarification, she felt the drug Dr. Shields wanted to use was not appropriate. She then recommended we start a drug called Felbatol.

Felbatol is what they call a "black box" drug, and was once removed from pharmacy shelves because there were some side effects reported, including death. The major side effect from Felbatol is bone marrow suppression or more commonly know as Aplastic Anemia (where the body stops producing blood.) Before we could start Jenelle on this drug, we had to get a baseline CBC count and liver panel. She will need blood tests every two weeks while on this drug until they determine that she is tolerating it. From emails to other families with LGS, I'm hearing very good things about Felbatol, and it seems to be one of the only drugs that works best with patients like Jenelle, will little cognitive side effects.

First thing first, we had to get a blood test before starting this new drug! This was not as easy as it sounds! Amazingly, Jenelle didn't make a peep during the many attempts to draw blood - which also could have been the Diastat/Valium taking effect. Once all was done, Jenelle was more stable and I went back to the office. I was expecting a horrible night of uncontrolled seizures last Thursday, but to our surprise, Jenelle fell asleep early and slept through the night. Friday morning, Jenelle was much more stable, so I took her to daycare and went to work. Just as I was settling into my day, the doctor's office called and the blood taken on Thursday had clotted and was un-usable. I was going to have to return to get Jenelle for another blood test! To make a long story short - 4 1/2 hours, 4 Phlebotomists and 2 lab locations later and they finally had enough blood to run the test. Poor Jenelle was in more pain this time as I noticed was stamping her foot with our last attempt as three of us held her down to get the blood. Poor thing is a turnip - no doubt about it! Unfortunately, Jenelle's veins are stretchy from her seizure meds thus making her blood draws difficult, to say the least.

Two hours after getting blood, the doctor called with the "all clear" to start the Felbatol. Jenelle has been taking it since Friday night and we will be weaning her up to the max dose over the next 4 weeks. When she is finally at the max dose, assuming there are no side effects, Jenelle will only be on two medications: Topamax and Felbatol. She did well this weekend but still had some seizures. Fortunately they are no where near the length they were on Thursday.

Like Dr. Shields predicted - Jenelle let us know that things weren't right. I'm grateful Dr. Wu was available and took her time to understand the situation to help us choose the most appropriate next step. Of course, I feel horrible about mis-categorizing her seizure type all this time, but I also realize we are still learning, and this is all apart of the learning curve of Epilepsy. We are still waiting on insurance to hear about the Keto Diet and about the doctor in San Diego - in fact, I think it is my turn to give them a call! I forgot to mention in my last update about the comment the insurance girl made to me on the phone (Brett really wanted me to include this so you all would now exactly what we are up against in dealing with our HMO.) When I first called in the appeal for Jenelle to start the Ketogenic Diet, the young girl from the insurance company who was taking down my information interrupted me and said, "And why does your two year old daughter need to lose weight?" ... get it? Ketogenic Diet = Lose weight? Instead of laughing and crying at this question, I simply explained that the diet was to help stop her seizures, and not for weight loss. I amaze myself sometimes - See what we are up against? ;)

Thanks for the continued prayers. Please pray that Jenelle tolerates this new medication without side effects and that it is the needle in the haystack we've been looking for! I'll keep you posted!

Friday, November 19, 2004

Pre-Thanksgiving Update

Jenelle had her IFSP (Individual Family Service Plan) meeting with Regional Center last week (a bi-annual meeting to discuss services and progress) and there is not much new to report. Jenelle's Physical Therapist and Therapists at the Blind Children's Learning Center all submitted evaluations and Jenelle is still at a developmental level of a 3 - 4 month old. She has scattered skills that reach even to the 18 months mark (like waving, etc.) but according to the "charts" you have to master all the qualifications of a certain level before you move up a level. It used to depress me to hear all the things she "couldn't" do, but somehow over time you learn to see her accomplishments in a different way, rather than on the charts. Jenelle is spending 2 half days a week at Blind Children's and we are hoping to increase it to 3 half days by January. I spoke with her teachers after they submitted her evaluation, and we all agree she would benefit from the extra therapy.

Jenelle is still having daily seizures, including some long ones that last many minutes. I spoke to Dr. Shields today about this and we decided to keep her on Lamictal, and take her off Vigabatrin. This wean will take 3 weeks. It seems all 3 of her medications aren't working and we certainly can't put her on a 4th medication. It is frustrating to see her seizing while on 3 medications, but I realize the importance of taking things one step at a time. She is somewhat stable on the Lamictal and at least she isn't having grand mals as frequently as before, so we'll take this time to get her off the other medications that aren't working before we move onto a new one.

As far as my dealings with the HMO appeal are concerned - I got a call last Friday wherein they "approved" Jenelle to see Dr. Shields at UCLA about UCLA's Ketogenic program! (sense my sarcasm?) I then informed the woman that Jenelle was already under the treatment of Dr. Shields, and that we'd been on their waiting list for over a year now, and that their program was closed to new patients. She then assured me that she would look into the program in Pasadena. I haven't heard anything since. As for the Metabolic and Mitochondrial Specialist at UCSD (whom I had voluntarily given up on seeing) - they called me yesterday to see if I'd be interested in having Dr. Haas review Jenelle's medical records. If upon review the doctor wants to see Jenelle, we can make arrangements for a "one time" appointment for a $160.00 "deposit." At the appointment, the doctor would evaluate Jenelle and would make written recommendations for tests that we could give to our Pediatrician to be done through her office (thus through our HMO!) I sent copies of her records last night and will check on them in a few weeks. In addition, I decided to file an appeal for UCSD as well - it can't hurt at this point!

And finally, Jenelle said the words I've been longing to hear all of her life… "mum….muh!" When she first said it, I was on the phone with my sister so she got to verify that indeed we heard the words correctly! She said it four times in a row, and once again the following morning, and again two nights ago in front of Brett. I honestly don't think she has made the connection that I am "mum muh" or that she is saying it with any meaningful purpose towards me, but it is a wonderful sound none the less. :) Now we need to work on "Daddy!" Also last Wednesday, her teacher informed me that Jenelle sat up in a "side sitting" position unassisted for 20 seconds! This is great improvement - Let's hope this strength continues so that she can sit up by Christmas!

Have a Happy Thanksgiving and thank you for the continued prayers! I'll keep you posted!

Thursday, November 04, 2004

Lamictal decrease worked!

So far this week it seems Jenelle has returned to some better seizure control. As I last reported, Jenelle's seizures were increasing significantly in duration and I put in a call to UCLA. We decreased her Lamictal dose by half on Monday, October 25 and she is currently taking 20mg a day. In the days that followed that decrease, she continued to have long seizures (her longest being over 5 minutes, with a 30 second break only to go into another 3 minute seizure almost prompting me to use Diastat!) Also, her sleeping habits grew worse in that she pretty much slept in 4 hour intervals. Not fun! Rather than call UCLA again last Friday, I decided to give her the weekend to watch her more carefully. After Friday, it seemed that her seizures decreased and returned to their "normal" duration. This week has been really good and we've seen very few seizures! I will call Dr. Shields on Monday to find out the next step. I hope if she can maintain this control on the reduced dose of Lamictal, we can wean her off either Vigabatrin or Topamax. I'll keep ya'll posted!

Also last week, we received the usual HMO denial letter regarding our request to see Dr. Sutherling in Pasadena for the Ketogenic Diet and Dr. Haas in San Diego for the metabolic testing. It was rather comical - in denying our visit to these doctors, the did however approve a visit to the neurologist she is already seeing! Boy, won't that come in handy! ;) Yesterday I filed an appeal for the Dr. Sutherling denial. I figured I might have better luck fighting for one and not both at the same time. Also there are no other Ketogenic Diet Programs in our area (other than UCLA which is closed to new patients) but there are other metabolic doctors… anyway, we'll know within 30 days. Please send us positive thoughts and prayers that we can get the authorization! Also, I sent her application to Dr. Sutherling's program last Monday, but we have yet to hear from them as well.

The kids are doing well and had a great night on Halloween. Jenelle enjoyed the fresh night air dressed as a bunny, and Jack enjoyed running to each house in his Spiderman costume. At first he just knocked on the door then ran to the next house, until he realized they were giving out candy when they answered the door! He soon got the hang of it. Oh and in case you were curious, we lost 3 fish (Nemo, Mickey and Minnie!) Because there was a 14 day return policy, I was keeping them in the "freezer" so I could return them on the weekend. When the third fish died, I tried to not let Jack see me fish it out of the tank. When he noticed only one fish left in the bowl, he asked me where Mickey was. I told him he had died, and Jack responded, "That's OK Mommy - Is he in the freezer with the Otter Pops?" The dead fish have been replaced with Mickey #2, Goldie (the golden algae eater) and Rainbow Fish #1, #2, #3, #4 and #5 (a school of neons that are too similar to name individually, so Jack just named each of them Rainbow Fish! ;) Too funny!

That is all for now! Thank you for the positive thoughts, prayers and support - we greatly appreciate it!

Monday, October 25, 2004

Princess Boo is Two!

Jenelle (our "Princess Boo") turned two last Friday. I can't believe its been two years! To celebrate, we started the day at Goofy's Kitchen at Disneyland for the character breakfast. We were seated in a dark corner booth, which originally had me a little upset, but then I realized it was perfect for Jenelle as she sees better in the dark anyway! Jenelle was seated in her new wheelchair when Goofy stopped by. He pointed to Jenelle and made a gesture like "what's wrong?" so we told him all about her. He was very good and went up to her very slowly and tried to interact with her by tickling her face softy. It was awesome! I think because his face was black and white, she could really see him. Brett's Aunt Nicki told her "Jenelle, It's Goofy!", and Jenelle said "Goo" in response! Not sure if it was on purpose, but it was certainly the right sound! I was so impressed with the characters and their attention to Jenelle - Disney has really trained their employees well!

Later during breakfast, Cinderella came to wish her Happy Birthday. Jenelle could not keep her eyes off Cinderella (who was in a very sparkly dress) and hopefully I have an awesome photo of the two looking at each other (I hope it came out!) Jenelle made lots of noises for her too, and really seemed to be stimulated by the whole thing! It was a wonderful start to the day. We then went to Disneyland where big brother Jack rode the Haunted Mansion twice! All in all, both kids really enjoyed the day, and we hopefully got some really great photos!

On Saturday, we had a "Princess Party" for Jenelle at the house that included a "Princess Club House" bounce house. Jack was thrilled and could not stop talking about the "presents, balloons, silly hats and goodie bags" (something he got from a Dora the Explorer episode!) When we sang Happy Birthday, Jenelle seemed to know it was all about her and raised her eye brows in response to "Happy Birthday Dear Jenelle." I purchased a special "Birthday Princess" party dress for her to wear that had feathers on the bottom and shoulders. She seemed a little upset by the feathers, so she didn't wear the outfit for very long. A fun time was had by all - I'm attaching some photos of Jenelle in her special dress!

Unfortunately, during this past week we have really noticed a significant increase in Jenelle's seizures. In fact, during the party, Jenelle had 3 very long myoclonic seizures, one on top of the other, both lasting about 3 minutes or more. I am usually fairly comfortable with her "daily" myoclonics, but this had me wondering if we needed to use Diastat, so I called the on-call Neurologist that night. He suggested we watch it carefully and use Diastat if she were to have 9 or more "clusters" (3 or more seizures) in an hour. All day Sunday and again this morning, Jenelle still had many more seizures - this really started to worry me. I put in a call today to UCLA and spoke to Dr. Shields just now. He said that sometimes an increase of Lamictal can cause an increase in seizures as well. He instructed me to decrease Jenelle's Lamictal immediately (no weaning) by half, and maintain this dose for another two weeks, then give him an update. It may be that Lamictal is not the right drug for Jenelle after all. I'm really disappointed because I was so happy with her overall development and alertness on this drug. But obviously, if it is not stopping her seizures, there is no reason to continue it if is isn't effective at a lower dose. I really hope it is just a side effect of the drug, and not some new development.

Jack and Jenelle both received flu shots a week ago. While at Dr. Patel's we discussed Jenelle's status, and I requested a referral to Dr. Haas at UC San Diego. Dr. Patel agreed it was probably a good idea to check out metabolic and/or mitochondrial disease (the later of which we have not tested at all) in addition to seeking authorization for the Ketogenic Diet. It is my understanding from other parents in the area that Dr. Haas is the leading metabolic and mitochondrial specialist in the area, if not in the nation. His office does not have an appointment available until January 2005, but they were willing to review a copy of Jenelle's records prior to an appointment, once we got authorization approval from our HMO of course… alas… more hoops to jump through! Tomorrow is Jenelle's 2 year check up, so hopefully I'll get an update on our HMO authorization requests.

Oh yes ... I mustn't forget to let everyone know… Jack finally reached 30 potty stickers! Saturday night after the party, Nana, Poppa George, Jack, Jenelle and I went to the pet store and purchased a fish aquarium, along with 4 fish. Jack named them "Nemo, Sebastian, Mickey (because the fish actually has Mickey Mouse on its tail!) and Minnie (for lack of better name!)" He is so very proud of himself and is really enjoying his new pets.

Thank you all for the continued prayers for Jenelle. I will continue to keep you posted on the Lamictal decrease - hopefully something will work soon - this poor girl could really use a break in seizures!

Saturday, October 16, 2004

Jenelle gets her wheels!

Jenelle got her wheelchair/stroller Wednesday morning. This thing is awesome - turns on a dime! It really is more like a "wheelchair" in that it also has a tray that can be used for feeding and/or playtime, but also like a stroller because it can be collapsed. Took me a while to figure out how to fold and unfold it, and its heavy, but no more than the double jogger stroller we got as a hand me down from our neighbors. I've decided I need a new car! This thing barely fits into the trunk of my Honda Accord - Brett thinks I'm nuts. He thinks Jenelle's new wheelchair is no reason for us to go out an get a new car payment! Oh well, I guess a girl can dream, right! ;) And sadly enough, this girl wants a mini-van - God I'm getting old!

We met with Jenelle's blind school Thursday to discuss the results of a recent development test she received. These meetings are never easy. It is hard to hear how she is doing so many new things, but yet she is still at the developmental level of a 3 to 6 month old. I decided a long time ago not to focus on these developmental "charts" and milestones. It is much easier to focus on what I see as improvement rather than the level where she is at. We should have our official meeting with regional center in the next month or so. As always, I want to increase her therapy, but we realize you cannot push her as one devastating seizure could set her back many, many months. I am hopeful for the progress she is showing, and am sure that it will continue to improve.

So, what is she doing that is new you ask? Jenelle bit me the other day! Normally, I'd be upset because this is such an issue with Jack, but for Jenelle, it was such a wonderful thing to see. I was lifting her out of the bath, and had her in an uncomfortable grasp - my arm was kind of digging into her rib cage. She of course was making noise that she wasn't comfortable, and then she bit me on the arm! I was so amazed, I carried her into Jack's room where Brett was reading him a bedtime story. I told Brett that Jenelle bit me, and then showed him her teeth marks - and Jack immediately yelled, "Mommy, Jenelle gets a time out!" Too funny. Also, the other morning, Brett noticed that while I was trying to seat Jenelle in her stander, she was repeatedly slapping and hitting me with her arm and fussy until I got her strapped in. Apparently, she didn't want to do that! Hopefully, these are good signs that she is starting to try to communicate her likes and dislikes. It is a wonderful thing to see!

Jenelle's 2nd birthday is next Friday - we are planning a day at Disneyland with a small party on Saturday. My, how times files but yet how busy these past two years have been. Jenelle is doing well with the dose increase of Lamictal - we are halfway there. She still has bouts of insomnia, but slowly she is sleeping longer. Unfortunately, Brett and I are not seeing much difference in her seizures. We'll just have to wait until we are at the full dose to make a better decision. And finally, we got the paperwork for Jenelle to apply to the Ketogenic Diet program at Huntington Memorial Hospital in Pasadena. In addition, I've decided that maybe we should first get an evaluation with a doctor I found in San Diego who is apparently "world renown" in Metabolic and Mitochondrial diseases. If Jenelle has a metabolic or mitochondrial problem, the Ketogenic Diet could be very dangerous, so it makes sense to do this first. Of course, we are jumping through the HMO referral hoops - so I'll just have to keep you posted.

Thank you all for the continued prayers and support. We greatly appreciate it.

Monday, October 11, 2004

Have you ever met a child that does not play with toys?

Have you ever met a child that didn’t play with toys? Or a child who cried when a toy was placed in her hand? A child who didn’t appreciate the soft comfort of a furry bear, or bunny? Have you ever met a child that didn’t laugh or smile?

Before my daughter, I thought that children like this belonged only to poverty stricken families – families from third world countries who are amid dieses and famine. Families who could not afford food or the luxuries of toys. Surely, a child like this must come from a place like that – where they have never know the laughter and joy of playtime.

My daughter does not smile nor plays with toys. She never laughs. She cringes and cries when we attempt to place a stuffed animal in her hands. She prefers to be left alone, sucking her thumb. My daughter knows all too well the harshness of hospitals and emergency rooms – the touch of a needle poking her arm trying to find a vein for blood, or to administer medication. My daughter’s brain is “broken”, she suffers from seizures, and she is not normal.

Her only joy is to be held and cuddled, and even then I’m not sure that brings her joy. It does makes me feel better. It is very sad to think of a child that does not play with toys. It breaks my heart to see the toys in her room that daily go untouched. However, it opens my eyes to see her world a little differently. What must she be feeling or thinking? Is she happy?

I pray for the day that she gives me an unprovoked laugh or smile. I pray for the day that she walks. I want her to use the words Mommy and Daddy. I do not expect her to ever be normal, but it would be nice to see signs of life.

Have you ever met a child that does not play with toys? Please meet my beautiful daughter Jenelle.

Posted by Hello

 Posted by Hello

Thursday, September 30, 2004

New plan of action!

After some gentle "prodding" I finally got a plan of action yesterday from UCLA. They are so busy and so under-budgeted that I'm sure its easy to get lost in their system. I'm still confident in their expertise, and am satisfied with our new instructions.

We are going to start a slow increase of Jenelle's Lamictal from 10mg a day to 60 mg a day. Dr. Shields recommended adding a pill every 3 days (until we reach 12 pills a day - yes, you read that correctly!) but I've decided to be extra cautious and will add a pill every 5th day. We initially had such a positive result on Lamictal (10 days seizure free) and she hasn't had any side effects so I feel if we are more cautious and conservative, all the better. After she is at 60mg a day, we are to give her 2 weeks, then call UCLA again to discuss weaning one of her other drugs (Topamax & Vigabatrin.) There was a new study published recently that says Lamictal has the best response and best developmental progress of any drug for Lennox Gastaut kids. Sounds encouraging, and as if we are on the right path! So, Jenelle got her first added pill last night with dinner - then she promptly turned into the "Party Queen of the Night" that she was when we initially started Lamictal. That insomnia effect is no fun for Mom and Dad!

Also, after emailing with some parents of our local Epilepsy Foundation COPE support group, I emailed The Brain Mapping Institute at Huntington Memorial in Pasadena as well as the Epilepsy Center at Johns Hopkins to see about getting into either Ketogenic Diet program. I know it is not an option at UCLA since learning their program is on hold, and she has been on the waiting list for a year now. According to a new LGS support group I joined, they say many of their kids have found wonderful results on Keto and Lamictal. I know the process of starting the diet will take lots of time, including time to get things authorized by insurance, so I'm sure the Lamictal increase won't hinder anything in us starting the diet. I'm told you can't be on Topamax when you start the diet, so maybe that is the drug we will try to wean first come mid-November when Jenelle is at her max dose of Lamictal.

And finally, Jenelle's wheelchair/stroller will be delivered on the morning of October 13! It will be such a nice convenience to have it as she is starting to get heavy to carry into school and daycare. I'm told it will have special straps so it can be secured to a school bus so she can join her class on field trips - and as I learned recently, it can also be strapped to the trams from the parking lot at Disneyland! ;)

Please continue to say special prayers for Jenelle these next 6 to 8 weeks during her drug increase. We hope she continues to tolerate the drug that is working so well, and that we won't have to discontinue it because of side effects. We hope that we can gain even better seizure control with the increase. Thanks for the prayers and support.

Thursday, September 23, 2004

Blood test results

We are still waiting to hear back from UCLA about some questions. In the meantime I wanted to update everyone before the information was too old; Jenelle's blood test for Celiac Disease came back negative (as in she doesn't have it.) We knew it was a long shot. I sent an email last Thursday to UCLA to inquire about the "next step" in medications for Jenelle and am waiting for Dr. Shields to get back to me.

I've learned recently that my updates are helpful in more ways than one… in my last update I stated that I thought Jenelle was no better or worse on the new drug Lamictal. One of you responded (you know who you are ;) that I was incorrect in that Jenelle was more alert on the new drug Lamicatal, and that I should remember that she was too lethargic and doped up on Klonopin. It really means a lot to me to know that all of you are so involved in my updates, and that you feel so much a part of Jenelle's treatment. I'm thankful for that reminder, because
without it, I may have pushed for us to start another drug too soon!

In addition to her daily seizures, Jenelle had another grand mal (her first since August 1) last Friday. It lasted only a minute and took place during her nap at her new daycare. Our new daycare provider said it was frightening to witness but I'm glad she got to experience in a mild way what Jenelle's grand mals are like so she knows what to expect. She did not have one the rest of the weekend, so that is a good sign. I think we may start to wean Vigabatrin, but will wait for the official word from UCLA. The bummer news in response to last week's email to UCLA is that their Ketogenic Diet program is on hold again. I'm assuming it is due to budget related issues. It may be well into next year before her name comes up on the list again. In the meantime, we are happy with the results we are seeing in Jenelle. She is more alert and seems to be doing well back in her special school. Brett's Aunt mentioned the other day that it seems Jenelle is really developing more of a personality - she can be crabby at times and impatient. I notice that she is really watching things and responds to vocal prompts more easily. These are great signs of good things to come! Jenelle got her inserts recently, so be bought her first pair of shoes - "Disney Princess Shoes" from Target. I will post photos when I can.

Jack is doing fantastically well in his new daycare. They have a program where the kids get to pick out a special prize from a toy basket if they were good that day or did a special deed to make "butterfly" status. In his first 6 days, Jack made "butterfly" twice! He is very happy, and his happiness is reflected in his behavior as well which is great news for all of us. The potty training is going well too, and Jack is working on 10 days without accident. We promised him a fish aquarium if he went 30 days without an accident. I was impressed last night with what seems to be math - Jack saw he had 10 stickers on the chart and said, "Mommy, only 20 more days for a fish tank!" Bribes work, don't they? He is so smart and is also interested in dialing phone numbers. Fortunately, he can only handle 7 digit numbers as Nana's number is too many to press in a row. We wouldn't want any calls to Sweden now would we?

Thank you all for the continued prayers. We greatly appreciate it.

Tuesday, September 14, 2004

Heaven's new Angel

I learned this morning that Allie Scott passed away late yesterday. I still ask that you all send prayers for her parents Jenny & Andrew. I can't imagine how difficult this must be for them, but then they seem to be so strong and almost graceful in their journey with Allie. I hope that if that day comes for Jenelle while I'm still alive, that I will be just as graceful and strong as the Scotts. Many prayers for their family.

Monday, September 13, 2004


By popular request - a photo of Jenelle's Pigtails! Posted by Hello

Also, I'd like to ask you all to say a special prayer for a baby girl in Texas named Allie. I came across her website last week through a friend, and was truly touched by this family's ordeal. Allie has cancer, and they believe she is on her last days. I could sympathize and relate to so much that they have been through, even though our daughters are fighting completely different monsters. The words her mother Jenny writes on their website are so similar to ones I've written and/or to similar thoughts I've had. Their web site requests prayers for Allie, and I figure with her "stability" these days, we can spare a few. I told a priest once that when I pray, I normally don't pray for Jenelle's health - we have enough family and friends doing that. Usually I pray for my own strength to stay strong in our fight for Jenelle. So if you can spare another prayer in addition to a prayer for Allie, please include prayers of strength for Jenny & Andrew Scott as well. I'm sure they could use them, especially today.

Here is the link to their website:

We are still waiting on word of Jenelle's blood test. I'll keep you posted when I get the results!

Wednesday, September 08, 2004

One year later...

We begin the month of September celebrating another month of "stability" for Jenelle. The Lamictal seems to help keep away the grand mals since we haven't seen once since August 1! Unfortunately, the Lamictal is no better/no worse in controlling Jenelle's everyday seizures. After first starting it we had a wonderful 10 days of no-seizures, but then they slowly came back to her regular amount of daily myoclonics and absence seizures. The seizures are still shorter in duration, which is an improvement, but we were getting that much control on Topamax alone. Her six week trial of Lamictal ends next week on the 14th, so I'm sure we'll be calling UCLA again for instructions on our next step (i.e. next drug!)

Jenelle's special school was closed the month of August and yesterday was her first day back. She was getting some therapy at home during August, but not as much as before. It will be nice to see her back in a routine again. They said she had an awesome first day and were happy to see her back. She is using her stander well, and we (Mommy & Daddy) need to find more time to get her in it! In addition to waving "bye bye" she will now wave "hi" in response to a hello. Again it is very subtle, be we are seeing her respond to different verbal commands, so it is encouraging. Jenelle's hair has now grown enough that I can put it in 2 teeny tiny pony tails on the top. Brett didn't like it much (he prefers the one pony tail) but Grandma thought it was adorable! I’m sure we'll be seeing huge strides in this month as Jenelle is now back in her infant development program. That therapy is so important to her right now.

Jenelle had another blood test done yesterday. I did some research a few weeks ago and came across something called "Celiac Disease". In particular, I found a newspaper article of a child diagnosed with Lennox Gastaut Syndrome that was later found to be Celiac Disease. From my reading, Celiac Disease is an auto-immune disease that is rather common (1 in 100 have it!) It is an allergy to Gluten. Some of the symptoms of Celiac Disease that seemed similar to Jenelle include development delay, uncontrolled seizures, red rash (which Jenelle sometimes gets on her cheeks and we haven’t found a doctor yet who knows what causes it), and gasey bowel movements and abdominal pain. She does not have the most obvious symptoms of this disease which include stunted growth and failure to thrive. I called Dr. Patel and mentioned the article I found – it seems once this child was placed on a "Gluten free diet", his seizures stopped and today (4 years later) he is a normal little boy. She has some patients with this disease and agreed that Jenelle didn’t have all the symptoms, but there was enough coincidence there to at least run a blood test. I asked her Neurologists if she had ever been tested for this, and they said no – "Celiac Disease is a GI issue, and we are only concerned with the brain!" ;) We aren’t getting our hopes up as this is a real long shot, but I guess when your left with nothing but hoping for a miracle, you'll look anywhere for it! I'll keep you all posted on the test results.

And not to dwell too much on the past, but as you noticed from the subject line, it has been a year since we got the call from her Neurologist about her Epilepsy diagnosis. I'm proud of the way we've handled things during this past year. A year ago we couldn't even pronounce words like "Hypsarythmia" (hips-a-rith-mia), "Vigabatrin" (Vi-gaba-trin), Ketogenic (key-toe-genic), or "Gastaut" (Gas-toe) - but now were are old pros. We know more about Epilepsy than we ever imagined we'd learn, and I feel we are at a point of acceptance about what we are dealing with, and how to fight it. Is Jenelle any better than she was a year ago? Not really, except in the small improvements we've seen over time. Has her prognosis changed? No. But we love her completely, and we accept her as our daughter with all the potential that goes with it. I found a sippy cup in the cabinet yesterday that was a baby gift for Jenelle that she still hasn't been able to use. It had her name on it and the meaning; "Jenelle means God's Precious Gift!" How appropriate!

Thursday, August 12, 2004

Jenelle met a new milestone! She has learned to wave "bye bye!" I am so thrilled! It is very subtle, but she will move her closed fingers up and down while sucking her thumb as she hears the word "bye", or will put her hand up as if to "wave" when she hears the word (if she isn't sucking her thumb!) I thought I noticed it last week, but then thought it was a fluke. On Sunday, a friend was visiting, and went over to Jenelle as she was leaving and said, "Bye Jenelle" and Jenelle waved in response! Our friend said, "Oh she waved - isn't that cute!" It was so cool!

Jenelle is doing well on the new medicine. She has been much more active and alert and it is great to see her this way again! I haven't seen a seizure since Saturday - not sure if Daycare has seen any. The only down-side to the Lamictal is that we are back to battling insomnia again! Jenelle has become the "party queen of the night" and has been staying up until 1:00 AM since last Friday, lying in her crib, making noises -her own private party! Yawn! According to some parents I've talked to, this type of reaction is common in Lamictal. Some say it went away after a few weeks, others said their kid slept very little the entire time! Oh joy! So far, we haven't seen the dreaded rash either - this is good news as well. So, I'll just keep "Knocking on wood" - its great to see and report good news for a change!

Oh yes - I forgot to add this very important piece of good news. Last Friday, we got a letter from UCLA - our next appointment with Dr. Shields is February 7, 2005! I'm not sure if they just scheduled us automatically, or if another follow up appointment was approved by the HMO, but we're keeping that appointment! I've said it before, my gut instinct is that sometime in the Fall, Jenelle's name will probably "come up" on UCLA's Ketogenic Diet program waiting list, so I imagine we'll be seeing them sooner than February 2005 (sounds so far away doesn't it?) Many prayers answered because of the many prayers from our wonderful family and friends! Keep those positive thoughts and prayers coming!

Monday, August 09, 2004

Where were you?

See how far we've come...
This poem was written by another parent who is a memeber of my online support group for special needs kids. I emphasize that I did not write this...

Where were you the day you got the news that changed your life forever? Where were you that fatefull day the world fell apart at your feet?

Where were you when the shattered fragments of your hopes and dreams came raining down?

Did you sink to your knees as reallity slammed into you? Did tears stream down your face ?

Did your heart break in two? Did you cry out in anquish or scream in rage?

Did you keep it quietly inside? and how did you live with the horrible ache?

How did you face another day? Do you rember that day as if it were yesterday ?

Is every detail etched into your mind?

Where were you the day your world collapsed? Did you know it would never be the same again?

Where were you the day your world caved in like mine did today ?

Many of the members responded by posting their own experience of "that day." Here is my reply:

Its been almost a year since we learned our sweet girl was having seizures. Looking back, it hasn't been just "one day" when we realized our world was forever changed. But, I think that is the way it goes when you have nothing but "normal" test results, and an "abnormal" child.

25 weeks pregnant - I was driving to work, and realized I was having painful contractions about a minute apart. Not sure why I didn't pull over and call 911, but I managed to make it home and have my neighbor drive me to emergency. Turns out, I had a kidney infection and kidney stones - the pain was causing contractions. They did an ultra sound to make sure the baby was fine - and she was! In the back of my mind I wondered - and to this day, I still remember that day and wonder...

Jenelle at 5 days old (October 27, 2002) - I was sitting on the couch watching the Anaheim Angels in the Game 7 of the World Series in the 9th inning. Our team wins and the room burst into happy screams and cheers. I looked over at Jenelle in her bouncey seat, and she didn't even wake and does not seem bothered by the noise. A feeling in my gut tells me this isn't right.

Jenelle at 10 weeks old - Her first day in day care as I went back to work. The day care provider pointed out just as I was leaving that "Jenelle doesn't smile much does she?" I brushed it off because our doctor said she would be delayed because of her prematurity, but my stomach lurched wondering “what if she doesn’t see?”

Jenelle at 6 months old – Our pediatrician finally agrees that she is not where she should be developmentally. We get the referral to the Neurologist. 3 weeks later, we are sitting in the Neurologist waiting room, watching the other children and their parents, seeing their wheelchairs, their behavior, their cries and moans … we wondered if this is what we had to expect, or if we should be thankful for what we have?

September 8, 2003 – After just sending out a positive email to family and friends about Jenelle’s first EEG, I get a call from the Neuro. Quick responses don’t always mean good news. Her EEG is very abnormal and he wants me to look up “Infantile Spasms” on the internet. He wants to see us immediately the next morning to discuss and begin treatment. He mentions hospitalizations, daily injections, something called ACTH, and that this was “not good news” at all. I was so naïve… I think “Epilepsy is good – at least we have a name, a diagnosis! There is medication for Epilepsy!” Then I search the internet and what I find is grim. I see things like “severe mental retardation”, “very difficult to control” and “short life expectancy.” I still cry just thinking about it. I mean honestly, how many times does a doctor tell you to search something on the internet so you know what to expect, rather than tell you what he knows?

September 11, 2003 (yes the second anniversary of 9/11) – Jenelle’s first hospital stay for her 24 hour EEG to confirm the Infantile Spasms diagnosis. I’m still naïve and fairly hopeful that this news isn’t so bad. I am calling UCLA to try frantically to get in for a second opinion.

October 15, 2003 – “Sleeping all the time is not a good thing, why don’t you bring her into emergency”… Jenelle’s first status seizure ending 6 days later in the hospital.

March 18, 2004 – UCLA mentions the possibility of surgery – removing half her brain! At this point I already knew the surgery existed. The first time I learned of it, I wanted to throw up - I couldn't fathom the idea of making a decision to remove half my child's brain. This time, instead of wanting to throw up at the thought, I’m actually hopeful and optimistic and realize this may be the only way to give her a chance at a normal life!

April 28, 2004 – At 3:30 in the morning, Jenelle has a 7 ½ minute grand mal (her longest ever) while in my arms while hooked up to the EEG at UCLA. Her lips turn blue. The next morning we are told she is not a surgery candidate, and that she has Lennox Gastaut Syndrome – even worse than Infantile Spasms.

May 7, 2004 – Her “special” school informs me that the Lennox Gastaut diagnosis makes her “too unstable” to be "in center" at the school. Effective immediately, they send her home with instructions to have a nurse sit with her. In my mind I know Jenelle is no different than any other day, but this is the first day my child is discriminated against because of her disability – and she is only 18 months old.

I’m sure as time goes by, I can add more dates. These are the ones that stand out in my mind’s eye today. The days I was stunned, scared as hell, emotional, in denial, angry and knew that my life would forever be different because of my beautiful little girl, who's disability and seizures are still a mystery.

Tuesday, August 03, 2004

As we begin the month of August, we celebrate the continued stability in Jenelle's seizures and 3 months since our last hospital stay (or 5 months since our last hospital stay for emergency reasons as opposed to just taking tests!) Thank you all for the continued positive thoughts and prayers. The calm summer has been a much needed blessing for our family.

We took Jenelle to see Dr. Shields at UCLA last Monday for another follow up. We informed him that the status of her myoclonic seizures remain the same, i.e. fewer seizures with shorter in duration. Unfortunately, since starting the Klonopin wean on July 19, Jenelle has had 6 grand mals (that we've seen.) The good news about the grand mals is that they too are much shorter in duration - the longest being only a minute in length. Dr. Shields felt the return of the grand mals was primarily from the Klonopin wean and nothing else - good news!

So, Dr. Shields's plan of action is to do "one thing at a time" …thus we were instructed us to start Lamictal, another anti-seizure medication. Accordingly, it will take 6 weeks to see the "therapeutic" level and results of this drug, so unless we come across a side effect that causes us to stop Lamictal, we won't make any other changes to her medications for at least 6 weeks. While I asked about the possibility of starting the Ketogenic Diet and/or getting the VNS implant as an alternative, Dr. Shields responded that we should try at least 3 more drugs after Lamictal before the diet and/or VNS. His reasoning is that with the diet, it can take up to 3 or 6 months to fine tune everything to ultimately see results, and with VNS is can take a year or more for results. Assuming each drug takes 6 weeks to see therapeutic results, we can go through the "drug trial" much quicker. After we see the results from Lamictal, Dr. Shields said he'd like to wean Jenelle off of the Vigabatrin as most likely it has worked on her infantile spasms and they have subsided because of her age. After Lamictal, the other drugs we will try are Keppra, Depakote and Zonegram. So, assuming we can keep the seizure stability we can expect this process of weaning a drug, then starting a new drug for a few more months. The ultimate goal is to find a drug that gives us the least amount of seizures possible with the least amount of side effects. Hopefully, we can find and keep a ZERO amount of seizures with something!

According to our HMO insurance, this was our last authorized visit to UCLA. We are going to try to put in a request for additional appointments to see if we can "stay the course" with Dr. Shields and his team. In my opinion, I don't know why our insurance wouldn't approve additional appointments - since seeing Dr. Shields, Jenelle has stayed out of the hospital (not including her April stay for tests) which in itself has saved our insurance thousands of dollars (literally!) Saving money talks - lets hope they listen and authorize some more appointments for us!

Jenelle's new stander was delivered on Monday. I met with one of her Physical Therapists on Tuesday to "try it out" and Jenelle did really well using her trunk muscles for sitting, and her leg muscles to support her standing. We are supposed to try to use it at least 3 times a day for as long as she can take it. Her regular physical therapist has been on vacation, so when she returns on August 17, we will hopefully get to order the orthopedic supports to go with the stander. Since going off Klonopin, Jenelle has been much more alert and active. We are seeing smiles again, and she is doing well to "look" at things and support herself when being held. Her wheelchair and bath seat have been approved by her insurance and we are just waiting for the order to come in.

Big Brother Jack is doing really well, and is finally potty trained with an occasional accident here and there when he doesn't get to the potty in time. He is so proud of himself and loves to tell everyone all about it! So, that is all for now. Thank you all for the continued prayers and support - we greatly appreciate it. I'll update again when I can!

Wednesday, July 21, 2004

Things continue to remain stable for Jenelle these days (knocking on wood)- thanks for the continued prayers! I spoke to Dr. Shields from UCLA yesterday regarding the improvement we've seen with the "max" dose of Topamax. Just a reminder, since reaching our max dose of Topamax, Jenelle's seizures have decreased in frequency and length - now we only get 2 or 3 a day lasting mere seconds instead of minutes. We have been concerned however because Jenelle's development has not improved much since gaining better seizure control. The sad reality is, as Dr. Shields delicately explained to me yesterday, that even with total seizure control, Jenelle may never improve developmentally. There still is hope that isn't the case - last week Jenelle was diagnosed with a "raging" ear infection, all the while she is still trying to bring in two new molars! He is hopefully that we can still give her development more time. Usually sickness like an ear infection, or teething will bring on more seizures, but we've maintained relative control so that is hopeful.

Dr. Shields decided that we've seen the best we are going to see with Topamax, however before moving onto a new drug, he wanted to wean her off one of her current drugs first. She is on three pretty powerful drugs as it is, so before adding a fourth, we'd decided to get rid of Klonopin first (a drug with valium components in it.) We started to wean Klonopin last night, and she will be off of it within a week. After missing last night's dose, Jenelle decided to wake up and make noise at 1:00 in the morning until 2:30 last night- not sure why, but maybe since Klonopin makes you sleepy, she was showing us how awake she was without it! I wish I had skipped the morning dose instead! Anyway, like sickness and teething, a drug wean can also bring on unwanted seizures, so I'm keeping my fingers crossed we can get through this week quietly. We will be off Klonopin completely by our next appointment with Dr. Shields, so we will then discuss a new drugs and maybe the diet at that time.

Jenelle was finally fitted for her stander and pediatric wheelchair. We are still waiting on insurance approval for the wheelchair, but it should be done by the end of this week. We will also be getting a "bath seat" which will be helpful since I usually just lay her flat in a tub of water 1 inch deep - maybe that is why her ear is getting infected so easily? Who knows! The stander will help her balance and bone density. Once we get the stander, we will fit her legs for supports (AFOs) and buy her first pair of shoes! High top Stride Rites - YAY! I’m sure they'll last a while since it may be a while for her to use them properly. The Pediatric Wheelchair is like a stroller and will be gratefully appreciated. Jenelle is almost sliding out of our current stroller, and I feel it doesn't support her well anymore.

On a final note - Jenelle's hair is getting even longer and thicker, but remains curly! She looks like a Q-pie doll! I have film waiting to be developed and will send new photos as soon as possible. Jack is doing well, and we hope will be fully potty trained by the end of this week. He loves his Nemo underwear! I will continue to keep you all posted. Please keep us in your thoughts and prayers that we don't have any unwanted seizures during this drug wean! Thanks again!

Saturday, July 03, 2004

Well, its always nice to hear the good news for a change, and I am happy to report that Jenelle has been doing really well lately (knock on wood!) Since hitting the "max dose" of her Topamax, Jenelle's seizures have decreased in frequency and length. She was having around 10 or more a day, and instead is now having 2 or 3 a day, and these last just a few seconds as opposed to half a minute or more! Her last grand mal (knock on wood) was May 26! We're not sure if this "progress" is promising enough to stick with Topamax or move onto the Lamictal, so we are waiting to hear from Dr. Shields for his expert opinion! ;) As far as I'm concerned, if this is the best control we can get - it is wonderful!

Jenelle's first day back at the Blind Children's Learning Center was wonderful. My Mother in Law picked her up from school that day and said, "she is a completely different baby!" She was much more stimulated and vocal - in fact Marianne said she babbled the whole time in the car on the way home and until she fell asleep for her afternoon nap! And, the best news is that Jenelle didn't have a single seizure while in school that day! It was as if she knew where she was and was on her best behavior, and was obviously so very happy to be back!

Jenelle is also vocalizing much more these days, and finally said "Mum ma" a few times last weekend. This is wonderful progress for her as most children master that sound around the age of 8 to 10 months or more. It wasn't really directed to me, but it was a beautiful sound none the less. She should have said "da" first as most babies master that before "ma" - so that will be our next goal. Her hair is finally growing more and has lots of curl to it too! Finally we can get a pony tail on the tippy top of her head! It is very cute.

A few weeks ago, we drove to San Diego to meet another family from Arizona that has a daughter like Jenelle. It was so nice to meet someone who knows exactly what you are going through, and who has similar experience. Jenelle and their daughter are two months apart (their daughter being older) and literally have identical symptoms. I say they are long lost twins because they look identical as well!

Overall things are stable and we are seeing lots of improvement. Thank you for keeping us in your prayers. We appreciate the support!

Wednesday, June 23, 2004

Seizures and Earthquakes

I'm sure this analogy has been made before, but living with a child with Epilepsy is like living in Southern California and waiting for the next earthquake. Even the EEG monitor and Earthquake Seismograph make similar "wavy" motions when the event happens. As a California native, I've learned that you can't live your life being afraid for the next earthquake anymore than you can live in fear of the next seizure. Still, the feelings and anticipation are very similar for me. We had an earthquake last week that was centered somewhere off the coast near San Diego. I felt it from my 13th floor office in Newport Beach, and believe me is was a fun ride as we swayed back and forth and jiggled up and down. The earthquake itself was minor with no major damage, so it literally was fun… but it got me thinking about past earthquakes, and how scary they really can be. Is it going to be a mild 20 second seizures, or a 7 minute grand mal? Will we continue with what we were doing, or will our activity stop so we can call 911 and go to emergency? Like earthquakes, you just never know what to expect with a seizure.

This is just an update with the latest on the kids. I've been keeping some things out of email lately until issues were finally resolved, but our family has been on quite a roller coaster since the beginning of May. Upon our return from the hospital at UCLA for her testing in late April, we were asked to find a new daycare for Jack. I think he got to a crisis point where he really needed us to understand that he was afraid, and not getting enough attention. As I mentioned, he really didn't take our leaving for the hospital well, and cried hysterically like he'd never cried before. Later he was acting out by hitting and biting other kids. He was definitely trying to tell us something. Jack started a new daycare with less kids the following week. The change in daycare has been good for him and he is much more himself these days. You can't really blame it as Jack being spoiled or having unusual tantrums - he is going through more than most 3 year olds and handling it as well as can be expected. Overall, he's a great kid and is now having a good summer.

Shortly after Jack switched daycare, the Blind Children's Learning Center asked us to remove Jenelle from their "in center" program because they felt her seizures were "uncontrolled" and that she was "medically unstable" for in center therapy. We were devastated because we were not only forced to find new daycare on short notice, the act of removing her from therapy so abruptly because of her seizure status was a harsh reminder of the new "reality" we must face having a daughter with Epilepsy. Jenelle seizure status was really no different than it was before we went to UCLA, but upon hearing about her 7 minute grand mal and her new Diastat prescription, the school was concerned. We asked the Epilepsy Foundation and Regional Center to work with us and the school and eventually worked out the issues with a couple of meetings and an educational seminar on seizures provided by the Epilepsy Foundation. Jenelle started back to the "in center" Infant Development Program today and we are grateful that she is back to the wonderful therapy that was benefiting her so much. During this time, we kept Jenelle at home using our respite nursing and/or using various babysitters (Grandma and Aunt Nicki). Her therapy continued (PT and OT in the home) but it was not the same amount of hours as before and we definitely saw the difference, as did Dr. Shields. Regional Center really came through for us and now Jenelle will be getting 20 hours of in home nursing daycare, so we will have a nurse staying with her at home. At this time we decided to separate Jack & Jenelle in the daycare setting to make Jack's environment more stable, but now that Jenelle is back at school, and with their summer schedule, she will start in the afternoons at his daycare next week.

Some have told me that I probably shouldn't have told Jenelle's school so much about her seizures and her new diagnosis, but I feel I would rather have people know everything (even the scary stuff) for Jenelle's safety and benefit. It would not be in Jenelle's future interest if we did not advocate for Epilepsy and start educating the public now so they can understand her issues and accept them. I realize some parents feel they need to be private about their child's seizures, but I feel we are doing more for Jenelle by bringing them out in the open than if we were to keep them private. So as you can see, the past two months have been a real ride of ups and downs as we've been scrambling for daycare and managing to get through these difficulties day by day. We seem to have survived.

Jenelle is relatively stable at this time. She's been on the max dose of Topamax for a week or more now, and is fighting constipation and is still having daily mild seizures. She usually has a grand mal every two or three weeks, but all this is pretty "stable" for us… meaning at least we aren't in the hospital. She is really responding well vocally, and her vocabulary includes "ah boo", "ah pffft", and "uh oh". Jack has affectionately nick named her "Boo" and she is starting to acknowledge that name as well as her own. I'm trying to slip in "mum" these days and she seems to be hearing me. She is also holding up her head well, and lifting up her body while on her tummy. Its wonderful to see her do so well, though we did have a set back with the decrease in therapy.

Jack is your typical 3 1/2 year old, and makes us laugh every day. He has his first crush on "Dora the Explorer", and fell in love with a "Dora" electric toothbrush I purchased a few weeks ago. He literally told me, "Mommy, I LOVE her. I LOVE her Mommy!" While the toothbrush was an easy purchase, it was a little more difficult to explain why he couldn't have the "pink" Dora tennis shoes! Jack also has a new love for "pockets" and likes for us to give him coins to put in his "pockets". This has been an excellent tool for teaching him the names of coins, such as quarter, dime, nickel, etc. However, Brett was a little confused the other day when Jack ran to him saying, "Daddy, I want my money back!" We eventually learned that the money was "deposited" into Jack's tummy as Jack decided to swallow a quarter. I guess we'll be looking for the return on that deposit with "interest" in the next week or so. And finally, Jack had the clever idea to fool Mommy the other day into thinking he'd finished all of his dinner. I found his vegetables all hidden neatly under his upside down milk cup! Ah, this age is so fun. Jack really loves his "Baby Boo" and likes to help with her therapy. He is pretty much the only person that can get her to laugh and smile on command! Its wonderful to see!

So, that is our update for now. As I said, things are stable and moving along day by day. We're pretty sure that we'll be trying a new drug for Jenelle (Lamictal) at the end of the month since the Topamax hasn't stopped her seizures. Our next visit with Dr. Shields is in August.

Tuesday, June 08, 2004

I told everyone that we were seeing Dr. Shields today (Tuesday) when in actuality, our appointment was for the "7th" which was yesterday. I knew it was the 7th, I just thought the 7th was a Tuesday! LOL Don't worry, we didn't miss the appointment!

Brett and I took Jenelle to UCLA yesterday where we met with Dr. Shields and his resident Dr. Shariti to discuss the recent test results. There is not much new to report since we left UCLA in April - Jenelle is still not a surgical candidate. Her EEG was abnormal (obviously) with no focal point to her seizures, the MRI was "normal" and there were no changes from her MRI in July 2003 (which is really good news), and her PET scan found an abnormality regarding her glucose metabolism in the right frontal lobe, but the results were "too inconclusive" to warrant surgery. Basically, our little girl is one huge mystery! I'll discuss the PET results in detail a little later...

Dr. Shields feels that Jenelle is "transitioning" into Lennox Gastaut Syndrome (LGS), but as he says, "the writing is on the wall, but its not carved in stone yet!" When a child has Infantile Spasms that are symptomatic like Jenelle (i.e. the patient has an "underlying" neurological condition, and in Jenelle's case, her "underlying" condition is undiagnosed) they have a greater possibility of transitioning into LGS, which means their seizures will change their presentation. This is something we have seen in Jenelle. Basically, her seizures have changed from "spasm" like seizures to "myoclonic and tonic/clonic" seizures. This could be the LGS, or simply that her brain has grown, and thus her seizures have changed on us. For now, he is calling it LGS; her ultimate "prognosis" with that is yet to be seen and/or determined. Basically, we were told to expect to deal with her seizures for the rest of her life - and honestly, this wasn't a huge surprise.

Dr. Shields feels we have a "few" more drugs to try before attempting the Ketogenic Diet or a VNS implant. He feels that the Vigabatrin has helped control her Infantile Spasms, and wants to continue with this drug a little longer. He also wants to increase her Topomax a third time to the max dosage to give it a full trial before moving onto another drug called Lamictal. We are slowly increasing Topomax now and will give it another month on the max dose. The Klonopin will stay the same as we don't want to make too many changes at once. He was honest with us and said he felt the other drugs we have yet to try may only have a 10% to 15% chance of successfully stopping her seizures. We asked for more details about the LGS prognosis since we've seen such varying information, and he admitted it was quite grim in that most LGS patients are severely mentally retarded and usually wheelchair bound, but in his experience, very few die. In fact, in his 20+ years of experience, he said he has had 2,000 patients with LGS, and only 2 have died. That is a much better statistic than those we've previously seen. A "shorter" life is still a possibility, and we accept that possibility.

He was very concerned with Jenelle's therapy, and felt our main goal at this time was to provide as much therapy and stimulation as possible so that we can help Jenelle reach her full developmental potential. He felt strongly that in a year or two as her brain grows, we may determine a focal point in the brain to her seizures that can be corrected surgically. It is very important that she progress developmentally prior to any surgery as there is always a risk of losing skills after surgery. The more development, the better the outlook after surgery.

About the PET scan results. We had received a copy of Jenelle's medical records prior to our visit yesterday, so we already knew about the focal point in the Right Frontal Lobe. This was concerning because Jenelle consistently favors and uses her left side of her body better than her right side. We assumed the problem was in the left side of her brain. Usually with a problem in the right side of her brain, it would be more likely that she would have problems using the left side of her body - not that it would be her "best" side. I asked Dr. Shields about this result, and he agreed it was very strange. Because the PET scan results and her physical presentation are confusing and/or conflicting, this is a reason not to support surgery at this time. It is quite possible that if the brain damage is to her right frontal lobe, it happened immediately during her development, and her brain has since taught itself to compensate and make different connections in order for her to use her left side so well. Frankly, they cannot explain the results, but it is something we can watch in the coming years as her brain grows. We are scheduled to see Dr. Shields again in August.

The goal at this point is to help Jenelle progress in her development as much as possible. We realize that seizures are just going to have to be a part of our lives - as much as we may hate them. We hope to find a medication that will provide some amount of seizure control that will help provide Jenelle the most development at this time. I'll continue to update when I have something new - thank you all for your continued prayers and support!

Monday, May 10, 2004

Just a quick update to let you know how Jenelle is doing. So far, we haven't seen a grand mal since UCLA… then again, the teething has died down a bit, so we're positive that played a part in bringing on the grand mal in the first place. Friday, Jenelle had a follow up visit with her Ophthalmologist Dr. Ching. According to Dr. Ching, Jenelle's eyes and vision are "normal" and she is far sighted. We talked about her failure to track objects and reach for or hold items in front of her. He finally gave her an official diagnosis of "Cortical Blindness". Basically, Cortical Blindness, often referred to as CVI (cortical visual impairment), means that the brain is not telling the eyes how to respond properly to what it sees. With a "normal" brain, Jenelle would properly track things and would perhaps reach for toys and/or other objects. Dr. Ching suggested we talk with Jenelle's Neurologist about how to work with this, and I've heard from parents that some vision therapy may be necessary.

Friday, April 30, 2004

Home from UCLA

We are home from UCLA and our trip was shorter than anticipated. The short story is, they think that Jenelle is not going to be a candidate for surgery. While heartbreaking, we knew this was a strong possibility. We were very impressed with UCLA and their "team" approach. We were admitted on Wednesday morning and Jenelle immediately gave them quite a performance. She started seizing about 2 minutes after they applied the EEG monitor. She had many seizures throughout the course of the day.

Wednesday afternoon we were visited by Dr. Shields and his nurse Sue Yudovin. It was wonderful to see them, and he check out Jenelle and commented that her tone was much improved since he'd last seen her 5 weeks ago. We told them we were already recording seizures and he thought that was great. They told us they would know quicker if surgery wasn't an option, than they would if it were. Later that day, we were visited by the "Team" which included about 8 to 10 med students, doctors, residents, attending, etc. Just like on TV, they swarmed over Jenelle, asked questions and made observations. I just stood in a corner in awe. They told us they already had a lot of seizure information on the EEG, but would continue through the night to see what they could get.

At 3:30 a.m. on Thursday, Jenelle had a grand mal that lasted approximately 7 minutes. This is the first one she has had for over 5 weeks and since starting Klonopin. It was also the longest one she's ever had. We had to use oxygen because her lips were turning blue- if we'd been at home, I'm sure we would have called 911. She seized for another hour after the grand mal and if they weren't recording the information, we'd probably would have medicated her with emergency meds (valium) to stop it. Oh, and all of this seizure activity was happening while Jenelle was still on her full meds. They were only intending to stop her "cold turkey" if she wasn't giving them anything, so like I said, she really performed well. Many other parents we know often spend days in the hospital and never record a single seizure on an EEG. We not only got her regular ones, but a grand mal as well! If anything, I think prayers were answered in that we have no doubt that UCLA got to see all of Jenelle's different seizures, so in essence, they gave us their opinion based on all the information, which in itself is a blessing. Or, as Brett says... "we need to tell everyone to stop praying for seizures because they over did it!" ;)

Overall they got a lot of information from the EEG. She is still having infantile spasms, myoclonics, tonic/clonics as well as EEG patterns that resemble seizures but are not (basically abnormal brain waves). She is not a candidate for surgery because there was no "focal point" to her seizures, and most likely at this point, she is moving into Lennox Gassteau Syndrome (LGS.) As some of you may recall, LGS is the more "devastating" type of Epilepsy, where most end up severely mentally retarded, or have a short life expectancy.
They ran the PET scan on Thursday, but not the MRI as we had a conflict in finding (or rather in keeping) the anestheologist. We have to go back up to do that as an outpatient in the next week or so, and we will return in a month to see Dr. Shields. Even though they are confident from the EEG that surgery is not an option, they want to do the entire work up to see what they can recommend. There are still different drugs we haven't tried, and of course, the Ketogenic diet may still be an option.

Jack took our leaving for "the hospital" very hard this time. When we left him at daycare on Wednesday, he cried hysterically. The night before I told him we had to take Jenelle to the hospital, and he asked, "where am I going to stay?" He's been temperamental, but overall is handling this well. We spent most of today spending special time with just him.

Brett and I are doing OK. We not sure what our next step will be as far as treatment, and we are somewhat disappointed. We truly appreciate all of your prayers and support during this time. You have no idea how much it means to us.

I'll update when we have some new results.

Tuesday, April 27, 2004

Sorry I haven't updated before now. We are set to go to UCLA for admission at 10:00 a.m. Wednesday April 28, 2004 for testing. Things have been hectic trying to make arrangements for this as well as Brett and I managing work. We will keep you all posted as soon as we have email access, or anything to report. Thank you for keeping us in your thoughts and prayers!

Friday, April 09, 2004

Brett just spoke with the medical director of Jenelle's insurance medical group, and all of the authorizations for UCLA have been approved! We are scheduled to go to UCLA on Wednesday, April 28, 2004 for her MRI, Video EEG and PET scan. According to UCLA, it will take about 3 months till they do the surgery if they determine she is a candidate. We estimate we'll be at UCLA for 4 or 5 days, depending on how long the tests take. Jenelle must be admitted because they plan to take her off her seizure meds "cold turkey" in order to induce seizures. She needs to be monitored so she doesn't go into status.

Please keep us in your prayers during that time. Thank you so much for your support!

Monday, April 05, 2004

Well, its been a little over two weeks since we saw Dr. Shields, and we haven't heard from UCLA since. Apparently their contact person who works with insurance and makes arrangements for tests has been on vacation. Apart from that, we are now in the midst of a battle with our insurance over allowing Jenelle to go to UCLA. Initially when we put in the authorization request for our second visit to Dr. Shields, they denied it. With some quick phone calls, in which I was transferred four times, I spoke directly to the Medical Director ( a doctor himself) of Jenelle's medical group and explained our situation. Apparently for whatever reason, her medical group wants us to go to UC Irvine rather than UCLA. We've heard that the Pediatric Neurology department at UC Irvine is actually dissolving, so we have no idea why other than distance they are sending us there. Once I spoke to the Medical Director, he said he personally knew Dr. Shields, and we needed to see him, so he reversed the initial denial the day before out appointment. A couple of days later, I got a letter from her medical group saying the authorization for our visit to UCLA was again denied. I am in the process of calling them daily to correct this - I'll keep you posted, but I'm confident we'll win out in the end.

We saw Dr. Phillips again last Friday and it was a rather pleasant and encouraging visit. He said he didn’t think Jenelle would make a good surgery candidate, but also thought it was an avenue we should explore. Since my last update, we heard from some friends that Dr. Michael Muhonen at CHOC is apparently a national renown brain surgeon. In light of our insurance issues, I asked Dr. Phillips if these tests could be done at CHOC instead with Dr. Muhonen doing the surgery, and he said, "He's the best, but he doesn’t do this type of surgery." Basically, according to Dr. Phillips, UCLA is the only place that does this surgery (for generalized seizures) and if it were his child, he would only go to UCLA as they were the best. He said he would step back at this point and let UCLA take the lead from here, but wanted to be kept informed, especially before she has any surgery. He said he hasn't given up on her, and neither have we. I feel more confident in our fight against insurance, especially in knowing that we must go to UCLA because the same thing cannot be done anywhere else.

On a lighter note, Jenelle seems to be improving with her fine motor skills, but at a stand still in her gross motor skills. She is making more eye contact, using her right hand more and is generally a happier baby. We are still seeing daily myoclonic seizures, but thankfully have not seen a grand mal since starting Klonopin. Last week, I was drying Jenelle off after her bath, and Jack was helping me. He started to play "peek a boo" with Jenelle and was trying to make her laugh. It worked and he got the biggest belly laughs and the best smiles from Jenelle. As she was laughing, she was making eye contact with him and really participating. At times she would pause in her laughter to wait for him to sneak up on her again. It was so wonderful to see them interact together. Jack looked up at me and said, "Mommy, I’m making her laugh!"… he must have really needed that. So did we.

I will keep you posted as the UCLA saga goes on. Please send positive thoughts and prayers that the dispute with insurance resolves quickly, and we can get up to UCLA soon. Thanks for the support!

Friday, March 26, 2004

Wanted to share that last night I had one of those moments with Jenelle that just melt your heart. Jenelle had fallen asleep on the floor, so I went to pick her up to put her to bed for the night. As I cradled her in my arms and carried her down the hall, she had the biggest smile with her eyes closed! She was sleeping so peacefully... of course, I called to Brett to come see and made her frown and open one eye... but then she just closed her eye again and smiled real big.

She knows she is loved!

Tuesday, March 23, 2004

I found Jenelle's Purpose in Life!

Brett has been reading "The Purpose Driven Life" and I've skimmed the pages a little. He's been struggling of late, wondering what God's purpose is for Jenelle. Me too in fact, I just can't imagine why she must go through the things she does. Then I had a conversation with my next door neighbor, who isn't that religious, who had this to say...

I told my neighbor this weekend that last Friday, one of the attorneys I work for, and really enjoy quite a bit, gave his 2 weeks notice. He is recently married, no children, no debt, and has a care-free, fun loving attitude. He is quitting because he doesn't want to put in the required hours anymore, and wants a change in his life. He is taking 2 months off to travel around the world, and then may start his own practice doing public interest law. Quite a difference from our practice. I asked him why he made this decision and he told me it was because of Jenelle.

I felt sorta weird with that response, he only met Jenelle days after she was born, but obviously like everyone else at my firm has followed her saga. He said watching her struggle, and the decisions we've so "gracefully" made, he decided life was too short. He no longer wants to put in long hours. He wants to enjoy his wife while he has little committments and lots of energy. He is thankful for what he has and through Jenelle has learned he needs to enjoy it.

I am bummed to lose such a fun guy. After telling this to my next door neighbor, and she said... "Don't you see? That is Jenelle's purpose in life. She is here to make others step back and look at their life and re-evaluate their values. She has saved this person and changed his life dramatically just by being your child and going through the challenges she is facing. While is seems cruel to her, you can see the beauty she leaves in the people she touches. Wow... I never saw it that way. It still seems unfair.

Friday, March 19, 2004

We met with Dr. Shields at UCLA yesterday to update him on Jenelle. He is going have us come back up in the next two weeks to run some more tests. He wants his own 24 hour Video EEG, another MRI and a PET scan, which is a type of scan used to show activity in the brain - Jenelle hasn't had one yet. We brought him up to date on Jenelle's seizures and her developmental status since our last visit in September, and he really zoned in on the fact that Jenelle favors her left side (something she has done since she was only days old.) He said that is probably a very big clue that there is probably something wrong with the left hemisphere of her brain.

He mentioned that surgery to remove part or half of her brain is now an option, and one that has a very short window of opportunity. They prefer to do this surgery between ages 18 months and 2 years of age so there is a better developmental outcome. I reminded him that last time we saw him, he said surgery wasn't an option, and he agreed that was true for Infantile Spasms, but says that she has probably grown past that now. He said that UCLA is the leader in the country right now for performing a new surgery on patients with generalized seizures (seizures that come from all parts of the brain) and that they have been very successful. He wants to run the tests first to determine if she is a good candidate, and also said we still can't rule out the Ketogenic Diet or a Vagal Nerve Stimulator (VNS) which is like a pace maker for the brain - a device that short circuits the seizures before they happen. The problem with the Diet is that UCLA has a very, very long waiting list, and he also agrees somewhat with Dr. Phillips in that she may not be metabolically stable to start it. He said we would probably never be able to pinpoint an exact metabolic problem with Jenelle. He thought she was pretty delayed developmentally, but that most likely her abnormal EEG (the Hyppsarythmia pattern) is the cause of her delays. Once we can give her some normal brain waves, she may start to progress. Continuing on her drugs may also be an option.

Seven months ago, when we were first introduced to seizures and Jenelle's diagnosis, I read all about surgical solutions I wanted to vomit. I couldn't imagine making such a decision as to agree to let doctors remove half your child's brain. However, now that we're on our 5th drug and all the difficulties we've encountered in the past few months, I realize it may be her best option if it looks like something that she could benefit from. He said before making that decision, he would have us meet with families that have done the surgery, as well as other counselors that will help us make that decision. I got a message last night from a parent that had the surgery done for her child, and she say it is "frightening but awesome" at the same time. This Mother told me that upon waking from surgery, it was very apparent that her child was already doing better and controlling both sides of the body very well. In fact, the side of the brain they removed had not been working, so the "good" side of his brain had already started to compensate and was already controlling the other side of the body. They said the PET scan made their decision very obvious in that they knew the one side of the brain wasn't working. Her son is walking, talking and living a normal life. If we must choose surgery, I hope our tests are just as obvious.

So, for now we're just waiting to hear from UCLA as to when we need to come back for testing. He said their hospital was full right now with RSV patients, but it would most likely been in the next two weeks. We need to move quickly, since Jenelle is almost 17 months old and we are quickly approaching the "window of opportunity."
I decided to move Jenelle's Journal of updates to this new "blog" format today - We hope you enjoy this new format!

Tuesday, March 16, 2004

I keep saying, it is the luck of the Irish. We got an appointment at UCLA for this Thursday, March 18. When I first called, the only available appointment was August 2 - 6 months away! I called back again to listen to the voicemail for the Neurology Department (it had a bunch of phone numbers I wanted to write down) and got a real person instead! By luck, they had an opening for Thursday!

Dr. Shields is very straight forward, and we recall last time he didn't hold anything back. We're anxious to hear his ideas, but also hesitant as we're pretty sure some of the news might be tough. I'll try to update when I can.

As for some good news, Jenelle has not had any noticeable seizures since starting the Klonopin. I've seen a couple of small jerks that look like her quick seizures, but nothing longer than a few seconds. She laughs a lot more and smiles more frequently, but is having bouts of insomnia, and Brett and I are recovering from a 4:00am wake up call this morning - yawn!

Friday, March 12, 2004

We met with Dr. Phillips today as a regular appointment for Jenelle, but also as a follow up to her recent hospital stay. The short story is, he is out of ideas and wants us to go back to see Dr. Shields at UCLA to see what he thinks about Jenelle.

Some of Jenelle's recent metabolic tests (taken in January) came back abnormal, but nothing really pointed to any real diagnosis. In fact, we've repeated the same metabolic tests 3 times, and each time they were abnormal, but the abnormal areas were different with each test. He has no clue why this is!

He reviewed each and every page of Jenelle's 48 hour EEG and said that there were no seizures, even though I the seizures that I saw. He disagreed with Dr. Trice in that he doesn't think the seizures are coming from deep in the brain and therefore not registering on the EEG. When we describe her seizures, especially her new grand mals which we didn't catch on the latest EEG, he agrees that it sounds like a seizure, but he is baffled as to why they don't register on the EEG. He even said in reviewing the results, he thought he saw some seizure activity, but then on video, she did not appear to be seizing in the normal fashion associated with such an abnormal pattern. He put us on a new drug called Klonopin (which has a component of valium in it), and we are going to take her off the Topamax because it clearly isn't working.

We discussed the Ketogenic diet. He said it is not an option right now because she has too metabolic instabilities. The diet can cause serious metabolic abnormalities, so it is best to wait for now. I disagree somewhat with this because I've read the diet is only used for kids with difficult to control seizures. If her seizures are so uncontrollable, wouldn't that be all the more reason to try to diet? We understand his decision.

Dr. Phillips has often suggested that I be a stay at home Mom with Jenelle. We talked about this and I asked him directly if he was keeping something from us. He said he wasn't keeping anything from us, but felt that some kids do better with the one on one attention. We then talked about Jenelle's developmental regression. He is very worried about this, and feels that she is going in the wrong direction. Jenelle's PT has noted that she is weak on her right side, and I've noticed that she is no longer rolling from tummy to back, something she used to do with ease. This could be because of the grand mals, or because Jenelle has an undiagnosed degenerative neurological condition. The later of course is the worst case scenario, but it does mean that if her condition is degenerative, she will regress until she dies. He said we weren't there yet, but he is concerned because she is regressing, and since we don't have a diagnosis, this (the degenerative neurological condition) is not something we can rule out. He also said that he would strongly advise staying home with Jenelle so we didn't have any regrets should an early death be the outcome. I told him about some of the new things Jenelle was doing. He was happy to hear it and told me that I really only tell him the bad stuff. He felt much better about things since she is progressing in other ways. Of course we aren't at the worst case scenario yet, and I have no regrets working because Jenelle is getting more treatment at daycare and her special school than I could give her if we stayed at home. Those therapies benefit her more.

I put in a call to Dr. Shield's nurse at UCLA who was gone. Hopefully we'll hear from her soon and we can get in quickly. We are going to see Dr. Phillips again in 3 weeks because he wants to closely monitor Jenelle on the Klonopin. I am also looking into places outside California like Johns Hopkins or Mayo Clinic to see if they can review her records. I think at this point Jenelle is such a mystery, I'm sure getting outside ideas about her health may be productive.

Tuesday, March 09, 2004

Again, Jenelle keeps us on our toes. After our event three weeks ago at the ER when she had 4 grand mals in a day, Jenelle went 7 days without a seizure! We were thrilled, and hoped that her new medication (Topamax) was working. However, last Tuesday, Jenelle woke herself with another grand mal that lasted almost 3 minutes. I stayed with her that morning, and she seemed fine. Later that day, during a session of Physical Therapy, her therpist mentioned that she noticed some weakness on Jenelle's right side. Jenelle has always been weak on her right side, but had improved. Then, Jenelle had another grand mal on Thursday and Dr. Phillips sent us to the ER. New seizures and weakness on one side guaranteed us a CT scan and hospital stay.

Jenelle was admitted to Children's Hospital Thursday night, and stayed until Monday for observation. In addition to her CT scan, they ran a 48 hour Video EEG and of course according to Murphy's Law, she did not have a grand mal for them to observe. Her "usual" myoclonic seizures had increased, and some lasted as long as 2 minutes. I marked many of them on the first 24 hours of the EEG, but according to our Neuro, they did not show up as seizures on the EEG. This could simply be because her seizures are coming from deep inside her brain and thus cannot register on the EEG. We're not sure what that means. Although I feel we left the hospital without any answers, Brett pointed out that we have some relief in that her CT scan did not show a stroke, tumor or brain bleed. He is absolutely right in that sometimes no news is good news. Jenelle was also teething over the previous weekend and that could have lowered her seizure threshold. Another possibility is that as Jenelle "grows up", her seizures will change as well and we just have to get used to this type of seizure. They increased her Topamax from 15mg a day to 45 mg a day, and she seems to be stable.

We will see Dr. Phillips again this Friday, and hopefully I will have more to report. Jenelle did make it to her first day at her new school last Wednesday, but I don't know how it went because she missed her second day. I'll try to update on that as well.