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!