Tuesday, December 30, 2003

After Jenelle's IFSP, we really started to notice Jenelle's seizures increasing, and her activity and development decreasing. It was then that I created my "own nightmare" between myself and Jenelle's Neurologist Dr. Phillips. Remember that love-hate relationship I was describing?... well, as Jenelle's seizures increased with the Pheno wean, I emailed him to see if we could increase her Vigabatrin. At the same time, I also emailed UCLA. Dr. Phillips told me not to increase the Vigabatrin but to increase the Pheno if the seizures were out of control. UCLA told me Jenelle could increase her Vigabatrin by another 1000 mg and that she was really only taking half the amount she could be taking. They suggested we keep up with the wean, and give the Vigabatrin a chance, but increase it slowly. So, I emailed Dr. Phillips with their advice... and of course after the fact I realize how that may have been insulting to him in that I double checked his advice. In return, Dr. Phillips sent me a "lengthy" email suggesting I make any changes in her drugs slowly, and that no seizures should be expected or accepted. We didn't email again until our next appointment, meanwhile I made the decision to increase the Vigabatrin - which in turn decreased the amount of seizures we were seeing. Well, I may have hurt his ego, but I think I made the right choice. It was just so annoying to see her seizures increase and know there was little we could do.

A few days later, our Jack (almost 3) woke one morning with a fever of 103. My first instinct was, "Oh God, please don't get Jenelle sick!" Poor Jack was home for a week with a very high fever. I felt OK and that I wasn't getting sick too until Friday, December 19 - ironically, the day of our next appointment with Dr. Phillips for Jenelle. When he asked how her seizures were doing, and I told him they were better, he smiled and said, "You increased the Vigabatrin didn't you?" That was all we said about that. He felt we should stay the course and once she was completely off the Phenobarbital, we'd give Vigabatrin another month to see if it helped. All three of us (Brett, Dr. Phillips and me) feel our next step will be the Ketogenic diet. That may begin as early as February. I told him that UCLA had a 4 month waiting list for the Keto diet, then Dr. Phillips informed us that he used to work with the best Keto team on the West Coast from Oakland Children's Hospital. The Oakland team was actually trained at Johns Hopkins in Baltimore - where the diet originated. Therefore, we may start sooner with Dr. Phillips here at CHOC. Our next appointment with Dr. Phillips is at the beginning of March.

Jenelle has been asked to participate in the NYU Epilepsy Center study on Infantile Spasms. They got my email from one of my internet support groups and asked if we'd be willing to send her records. The study is not a drug study, and only requires a copy of all Jenelle's treatment records - therefore we won't be heading to New York anytime soon. They will be comparing the two drugs Jenelle has been using, and the overall quality of development on each drug. Let me tell you, I have a ton to say about ACTH - yuck!

And then, just as things couldn't get worse, Jenelle started to have a fever of 102 on December 23. Knowing that a high fever could trigger seizures, I emailed Dr. Phillips to tell him she may have the flu, and asked if we needed to look for anything. He called me back and told me to get her to the ER immediately, as the flu and her seizure disorder was potentially fatal or could lead to a permanent seizure state. Did I mention I was deathly ill with the flu? So, Brett took Jenelle to the ER, where she tested positive for the Influenza Virus that had been going around and was placed on Tamiflu. She hasn't had a fever since and it appears we caught it in time.

So, 2003 will not go out without a real fight, but in a way, I'm glad we're all getting the sickies over so we can start a fresh new year! We hope your holidays were great and that your New Year is fantastic!

Tuesday, December 09, 2003

We met with Regional Center today to discuss the plan for the next 6 months for Jenelle (her IFSP, individual family service plan.) The meeting included Jenelle's Occupational Therapist, her therapist's Department Head, our Regional Center caseworker and the head of the Early Intervention Program at Regional Center. It was great to have a meeting of the minds, especially minds that have so much knowledge about Jenelle's issues and needs. While I had mentioned I wanted to find an "infant development" program where Jenelle could be "in center" for therapy, they helped us realize it might be too big a step for Jenelle at this time. We are going to increase her therapy at a one on one level in the home, and may try to schedule an additional session that can be "in center" so we can see how she responds to that environment. It's tough because we need to set challenging goals, but at the same time we must take baby steps in order to reach them. If we feel Jenelle is ready for an "in center" program sooner than 6 months, we can re-visit her plan and make adjustments accordingly.

After the meeting this morning, I took Jenelle to the lab for more tests. Poor little baby had to give urine and blood again. She did very well and didn't even cry or scream out when they poked her arm for the blood. Not sure if that is good, or if it means she is just too used to all the poking and prodding! One test is going to be sent to Baylor University for reading, and we most likely will not have the results for another 6 to 8 weeks.

Monday, December 01, 2003

I'm starting to have a love-hate relationship with Jenelle's Neurologist, and I'm never going to send another update saying Jenelle hasn't had a seizure, because I definitely jinx it! Jenelle continues to have more seizures and remains on a lower dose of Pheno and the same Vigabatrin dosage. Brett and I think that the Vigabatrin is probably helping her spasms, but not the myoclonic type seizures that we are seeing.

The day before Thanksgiving just before 5:00p.m., Dr. Phillips called Brett to tell him some of Jenelle's metabolic tests were back and he wanted to run some new tests. We couldn't get to the office in time to pick up the lab work, so he said he'd just mail it. Of course, I didn't take the call and had tons more questions - which I knew I'd worry about over Thanksgiving! I spoke to Dr. Phillips today and he said that one of Jenelle's tests from he last hospital stay came back indicating an elevation in the level of some hormone. Apparently this was different from a test previously run a month earlier, so he wanted to re-test her. Fortunately, the test is only urine, but the results could take 8 weeks. When we talked, I explained that Jenelle was still having seizures, and he said to increase her Phenobarb. Because we want Jenelle off the Phenobarb so we can give the Vigabatrin a chance, I choose to ignore this instruction. Jenelle's seizures remain constant, and are not increasing, so we'll stay the course. We see Dr. Phillips again on December 19.

Friday, November 21, 2003

Jenelle had her ABR Hearing today to determine if she has any hearing loss, and to determine whether the connection from the sound to her brain is functioning. The results were normal for both ears.

Just prior to her sedation, Jenelle had a "new" seizure that I've never seen before. She was shaking, trembling, and it lasted for about 5 seconds - the longest seizure to date. It may have been the closest thing I've seen to a "grand mal" in her seizure behavior. Dr. Phillips was not overly concerned, but told us to keep an eye out for them. The good news is that Jenelle has been on a "lower" dose of Phenobarbital and a higher dose of Vigabatrin for a week and a half, and we haven't seen a seizure since Sunday. Not sure what the "new" seizure was, but we're glad we haven't seen anymore.

Wednesday, November 19, 2003

Jenelle had another EEG yesterday. While it was being done, I went behind the technician to look at the monitor. Most of the waves I saw were much better than before, and much less chaotic. I only saw a little bit though, but I was hopeful. I emailed Dr. Phillips today to remind him that her EEG was done, and I told him what I saw. He emailed me back and said I was right! Jenelle's EEG is somewhat improved, but still the same in some areas. The only "new" thing we've done since her last EEG is add Vigabatrin, so hopefully it is working somewhat. Great news... improved is definitely a step in the right direction!

Tuesday, November 18, 2003

Well, I jinxed it with our last update. Jenelle went 5 days without a seizure, then about 2 days after updating the diary, they came back. First they were few and far between, but then they returned with a vengeance and she is now having as many as 12 to 17 a day (that we can visually see… she could be having ones we don't see.) Dr. Phillips was on vacation last week and we couldn't contact him until our appointment yesterday. Prior to that appointment, I called UCLA to get their thoughts on whether or not the new drug was working, and they recommended we wean her slowly off Phenobarbital, because it is likely that it is working against the Vigabatrin.

We saw Dr. Phillips yesterday, and it wasn't the most uplifting appointment we've had. Dr. Phillips agreed to try to wean her off Phenobarbital, and the scheduled wean will take 6 weeks. We will slowly increase the Vigabatrin in the meantime to see if it makes a difference. He felt, however, that most likely the Vigabatrin isn't working at all. Although Jenelle's EEGs show the typical Infantile Spasm patterns, Jenelle has not acted like the "typical" Infantile Spasm patient, nor is she responding to the Infantile Spasm treatments. The majority of her seizures are described as "myoclonic" which means they look like jerks, startles or head drops. He felt that in addition to her Infantile Spasms, she has a "Myoclonic Seizure Disorder" (basically 2 different seizure disorders at the same time) so we need to start trying to treat that type of seizure, which may mean a new drug. He mentioned trying ACTH again and we thought maybe had her confused with a different patient, but he said that sometimes kids respond to a second treatment as they could vary the dosing differently to where it might be beneficial. We reminded him that she became catatonic on ACTH, and he said we should think about it, but wait a little longer to give the Vigabatrin more of a chance. He also said we may consider another drug called Topomax, and told me to get Dr. Freeman's book about the Ketogenic Diet to help us decide whether or not we want to go that route. The Ketogenic Diet is a very intense diet similar to Atkins, and is not recommended for children under a year, but it has had marvelous results in some Epilepsy patients.

So, we're pretty much doing all we can to find the right drug to stop her seizures. The ultimate goal is to stop them completely, not suppress them. UCLA told me that children are the most difficult Epilepsy patients in that once you find the right dosage and the right drug, they grow and then they throw it all out the window, thus starting the process again of finding the right drug. We're in for a long fight. Also, he didn't have the results in front of him, but he thought that all of her metabolic tests from the spinal tap we did in September were normal.

Two wees ago, Jenelle had some Physical Therapy and Occupational Therapy evaluations, and another initial evaluation for California Children's Services. Jenelle has some issues that could start to indicate Autism, specifically her tactical defensiveness and sensory issues. I asked Dr. Phillips if he was considering that for Jenelle, even as her "underlying" diagnosis, and he said no. He felt she had some Autistic lik tendencies, but it was still too early to diagnose, and it was too early to determine which of those Autistic like tendencies are not just related to the seizures. Fifty percent of kids with Infantile Spasms end up being Autistic, so its not something we've ruled out. Dr. Phillips feels that Jenelle has had something wrong all along, but we just can't diagnose it, which is a good thing, and then the seizures on top of that. He said the kids with the "unknown" diagnosis usually have the best outcome, so we should be happy that her's is undiagnosed.

Prior to our appointment with Dr. Phillips, Jenelle had Physical Therapy. I asked her therapist why she still wasn't sitting up. She said that Jenelle has the strength to sit up, but she has a problem with her "vestibular" system, which controls your equilibrium. Her brain does not compute what she is supposed to do with her muscles when she is placed in the sitting position. This can improve with therapy. Jenelle is having her ABR hearing test this Friday, which is a test that measures her brain's response to sound to see if the brain is computing what it hears. This test may give us some ideas as to why she is having the vestibular issues as well.

The great news is that everyone agrees that Jenelle is looking better than they've ever seen her. She is still improving on her motor skills, still trying desperately to crawl (she loves that swimming motion) and she is starting to chew her foods, so I'm introducing diced peaches and pears as well as cheerios into her diet. She is making eye contact and is more interactive and playful with us. The middle of the night waking have gone away for now (and now I've probably jinxed that too), but she still has difficult getting to sleep, which I would assume would be due to the Vigabatrin. She started back to daycare on November 12, and I went back to work.

Wednesday, November 05, 2003

Jenelle started taking Vigabatrin the day she stopped the ACTH (10/28), and things are good! She is definitely "different", but its hard to explain how. The Vigabatrin comes in powder form, and we are to increase the dosage every three days until we don't see any more seizures. Last Thursday, her 4th day of Vigabatrin, and the first day of the increase dose, Jenelle developed a bumpy rash, so our Neurologist told us not to increase the dose until she could tolerate it better. She still has the rash, so he'd like us to keep her out of daycare a little longer to see if it subsides. Also, this will give her immune system a good 2 weeks to come back. She should be going back to daycare sometime next week - we hope, depending on the rash.

Now, the really good news. We haven't seen a seizure since Saturday night, November 1. I've seen a couple of "strange" facial expressions, similar to ones she used to make during seizures, but I'm not positive they are actual seizures. These facial expressions have been too slight and usually accompany her being touched or startled in some way. Dr. Phillips said if we aren't positive it was a seizure, then it probably wasn't.... which is good news! We need to schedule another EEG for next week, and then we will see him again on November 17. If I see another seizure, then we are instructed to increase her dose. She is on 500mg a day at this point.

Now, for the great news. Jenelle is much more alert and attentive since starting Vigabatrin. She has really made efforts to hold her head up, she is using her hands for support when on her tummy (something she's never done) and she is making excellent eye contact, and turns to voices or sounds. It's so hard to describe how she is "different", but it is definitely the "different" we were hoping to see, and we hope it continues and improves. It also appears that she is making efforts to crawl. Jenelle still can not sit up, so I didn't think she was trying to crawl, but her Physical Therapist said it was possible that she may crawl before she sits up. Jack sat up before he crawled, so I didn't think a baby could crawl first. Any improvement would be wonderful, but she has a long way to go before she starts moving around the room.

One of the not so nice things about Vigabatrin is that Jenelle is having bouts of insomnia... much to our dismay. She is usually not falling asleep until midnight or 1:00 am, and often wakes up at 3:00 am to coo and make noises in her crib until 5:30 am! I guess the good side of this, if any, is that at least she isn't "alert and cranky" and we don't have a child who is crying non-stop at 3:00 am. Hopefully, this too shall pass. As for her "one year" progress report... Jenelle is now 25 pounds, and 29 1/2 inches long. The day we started her treatment on September 29, she was only 22 pounds.

Monday, October 27, 2003

Since coming home from the hospital, Jenelle is doing so much better and is back to her old self - laughing, smiling, cooing and rolling all over the place. Its such a wonderful change from the very lethargic baby we had over a week ago!

The weaning process is complete and Jenelle had her last shot of ACTH on this day! It will take another week or so for her immune system to be replenished so that she can return to daycare. As of last Friday, we hadn't started any new drugs because Dr. Phillips wanted to give the B6 more time to work. We were excited up until last night as Jenelle hadn't had a seizure all weekend... unfortunately, she had 4 at dinner on Sunday night, and had 3 this morning at breakfast. I emailed Dr. Phillips today to give him her status, and he sent an email with instructions to start Vigabatrin! Vigabatrin is in "crushed pill form", so she'll get it with her food or bottle.

Jenelle's first birthday was last Wednesday, and we had a small pizza dinner with ice cream cake to celebrate. Jenelle had her very own ice cream cake (from Cold Stone Creamery) and absolutely loved it... until an hour later when the dairy upset her tummy. Oh no, Mommy overdosed her on dairy! She cried for nearly an hour, but after a dose of Zantac, she was fine! We are all doing well and its nice to get back to somewhat normal. We are hoping and praying that the Vigabatrin is the drug for Jenelle.

Wednesday, October 22, 2003

Jenelle's 1st Birthday!

While I thought this day might be emotional for me, knowing that Jenelle is so far behind developmentally, I found that I was rather relieved that it finally arrived. I see this day not as a milestone to point to what Jenelle "isn't" doing, but to hope for all that she can accomplish in the coming year. Life with a special needs child means there are constant reminders of how your child isn't "normal." Birthdays are just a part of those reminders, but thankfully only a small part.

Jenelle is the strongest person I know, and she has already been through so much in her short 12 months of life. Think of the potential for the coming year, and how she will strengthen and grow. That helps me get through this day.

Monday, October 20, 2003

Jenelle was released this afternoon after another EEG. She finally made a dramatic change of status early Sunday afternoon. Saturday evening, she was more awake, however Sunday morning she was still a little lethargic. We took Jack and Jenelle for a walk around the hospital in her red wagon they provided. When we were done, Brett and I took Jack to lunch leaving Jenelle with Grandma. Upon our return, she was a completely different baby, rolling around in the crib and making noises. It was a great to see her back to somewhat normal.

About 10 minutes after we returned from lunch, Dr. Phillips made a surprise visit. He said he had been thinking about Jenelle's status, and realized we'd done something wrong. When Jenelle was admitted last Wednesday, I told Dr. Phillips that I remembered that her best day of seizures was the day after the B6 treatment two weeks ago. So, upon admission, they gave her B6, along with the increased Phenobarbital, and a decrease of ACTH. So, technically, we were making 3 changes at once, so his problem is determining which drug is making the difference. Apparently, in addition to B6 deficiency, B6 is also used solely as a treatment for Infantile Spasms. Usually it is used in conjunction with another drug. So, Dr. Phillips requested another EEG this morning, so he could see her response to the B6, and determine whether or not it is helping her seizures. B6 is good for her anyway, so she now gets it twice a day. We will hold off a little longer on starting the Vigabatrin until we have a better reading of her B6 response, and her Phenobarbital level. We will be starting it soon though, probably the end of this week or early next.

There was an article in Sunday's Orange County Register about the various Epilepsy Centers now available here that weren't available two years ago. The article featured a photo of our Dr. Phillips outside the CHOC Epilepsy Center. Brett and I teased Dr. Phillips on Sunday and asked for his autograph... we told him that in addition to seeing the "famous" Dr. Shields at UCLA, we now see the "famous" Dr. Phillips of Orange County. We are so lucky to have such wonderful resources so close at hand.

Big Brother Jack is doing well. When he and Brett drove to the hospital to pick me up for our trip to the pumpkin patch on Saturday, Jack asked where they were going. Brett replied that they were going to the hospital to pick me up because I was there with Jenelle. Jack then said, "Yeah, Jenelle's sick, but Mommy is going to make her better!" This evening after I picked up Jack at daycare, I took him on an errand to Target to get Jenelle's prescriptions. While we were there, I bought him a pair of new shoes with "Thomas the Tank Engine" on them (his absolute favorite of course.) When I put him in the car as he was wearing his new shoes, he looked up at me and said, "Mommy, I'm happy." Oh, melt my heart - he is just so sweet, and he really is handling all this very well.

Saturday, October 18, 2003

The good news - Last night and this morning, Jenelle appears more alert and awake! She is not her usual self, but much improved ovreall. If this continues, we may bring her home today or tomorrow, or at the latest sometime next week. We hope she can be home for her 1st Birthday on Wednesday!

We saw Dr. Phillips last night, and he didn't exactly agree with Dr. Trice that Jenelle was "Sub Clinical Status", he felt her sleepiness was simply a bad side effect of ACTH. As I said in my last email, we hadn't "seen" a seizure since Monday. Obviously her EEG indicated she was having seizures, so the "visible" ones would be less visible - I think both doctors are right. Last night, Jenelle had some "more visible" seizures like she was previously doing, which may mean she is coming out of her "constant" seizure state. We really won't know until she is completely off the ACTH.

Brett and I spent time with Jack this morning at a daycare field trip to a Pumpkin farm. Seems we all needed an outing like this. I'm the one staying overnight at the hospital with Jenelle, and she is now a "famous patient" as everyone heard about the problems starting her IV. Fortunately, the nursing staff is friendly and supportive.

Thursday, October 16, 2003

Jenelle is in the hospital

Jenelle was admitted to Children's Hospital again on Wednesday. I emailed our neurologist Dr.Phillips late Wednesday morning to let him know we weren't seeing any more seizures, but that Jenelle was still sleeping all the time and very lethargic. He called me back to ask me to come in for another EEG that afternoon. The results of the EEG showed that there had been no improvement with her seizures, and in fact, they have become worse. He admitted her immediately because he was concerned with her being so sleepy.

Since being admitted, Jenelle has had numerous tests including blood work, urinalysis, a CT scan and spinal tap. All of those tests results were normal. Dr. Trice is another neurologist who covering for Dr. Phillips today, and she informed me this evening that Jenelle in light of the normal results, she believes Jenelle is in what they call "Sub Clinical Status" meaning a constant state of seizure, but presenting subclinically (not visible to the eye). This can be treated with medication. She is responsive and cries when touched, so Dr. Trice does not consider this a state of "Status Epilepticus", which is much more critical.

We are taking her off of the ACTH, and the weaning process will take 10 days. They will increase her Phenobarbital through IV this evening, and hopefully she will be more responsive once that kicks in. We will start Vigabatrin as soon as possible, and will discuss that with Dr. Phillips tomorrow.

Please keep us in your prayers - we appreciate the support. Also please feel free to contact us at the hospital if you need to... we'd welcome the company! Thanks so much for the support! I'll keep you posted!

Tuesday, October 14, 2003

ACTH Treatment - Week 2

Today is Jenelle's 14th day on ACTH. Last Wednesday we increased the dose to 50 units a day, and her seizures decreased a little more, but she still has one or two a day. Last Thursday she had trace blood in her urine, so we did a urinalysis and it was normal.

Yesterday, we saw our Neurologist Dr. Phillips for a follow up visit. He was not happy that her seizures have not ceased, and is inclined to wean her off ACTH and start Vigabatrin. When we discussed the blood in the urine, I also mentioned that Jenelle is sleeping all day, all night, and only really waking to eat. Dr. Phillips did not like that at all. He felt that she should not be sleepy from the ACTH, and told us to go to Emergency to run a blood test, urine test and possibly another spinal tap. He felt she might be sleepy because she might be fighting off an illness. After 5 attempts (and 3 hours later) they finally got enough blood to run the tests. The doctor at Emergency was great, and thought it best to run a Phenobarbitol panel as well to make sure her drowsiness wasn't caused by too much Pheonbarbitol. All of the tests came back normal, and her Phenobarbitol level was actually very low. They decided they didn't need to run a spinal tap and sent us home. Also, her blood pressure has continued to stay on the "normal" side, so hopefully we over that scare from last week.

Once we got home, I spoke to Dr. Phillips and he said he was still worried about her sleeping all the time, but that he was glad the tests were normal. We are not to let her sleep longer than 8 hours so she can get enough liquids. She is actually eating much more now that she has been on the ACTH. She has increased from 1 1/2 jars of food a day to 3 -4 jars, and from 3 bottles to 5 bottles a day. She gained 2 1/2 pounds since we left the hospital two weeks ago. We are going to continue the ACTH at the same dose until Wednesday, then talk again with Dr. Phillips about possiblly weaning her off. She is starting to get cranky and cries a lot when she is awake, so its nice that she sleeps most of the day. We understand his concern though. He was not inclined to increase her to the maximum dose of ACTH because he hasn't seen a cesation of seizures. He felt with her sleepiness, the side effects of the high dose would be just too risky.

We may decide to wean her off ACTH on Wednesday. If we decide to wean her off on Wednesday, she could be off the medication completely by her birthday the following Wednesday. We just wish she were seizure free, but at least we gave this medication a try.

Tuesday, October 07, 2003

ACTH Treatment - Week 1

Today is Jenelle's 7th day on the ACTH injections. Poor little thing is starting to get track marks on her thighs, but she is still taking the shots well and has only cried once or twice. We had a scare on Sunday with her blood pressure reaching 190 over 160 - too high even for an adult. We are using just a hand pump blood pressure gage with a stethoscope, but I asked my next door neighbor who is in nursing school to come check me. She happened to have a friend visiting who was a Nurse at CHOC for 12 years and she checked it as well. Both got similar readings. So, we went to the emergency on Sunday night at the request of the doctor. We didn't even wait to get in, and wouldn't you know her pressure dropped to 109 over 64 when they first checked it. They monitored her in the ER for two hours and sent us home. Better safe than sorry!

Jenelle is still having seizures. Yesterday she had more than any other day on the injections so far. While this is discouraging, I am being told by fellow "IS parents" I've met on an internet support group for Infantile Spasms that it could take the full two to three weeks to stop the seizures. In fact, one parent said their child had a very bad day of seizures before she stopped completely the following day. The "grand finale", or so she described. Hopefully yesterday was that for Jenelle.

Other than the blood pressure, Jenelle is doing well. She sleeps a lot, and seems to be more withdrawn, but she does have her playful moments when she turns into a cooing chatter box, and rolls across the room. I will keep posting update weekly.

Thursday, October 02, 2003

Jenelle was released from the hospital today at around 5:00 p.m. Brett and I now know how to give shots, and we each gave Jenelle a shot before she was released. She didn't cry for either of us, and hasn't cried for a shot since! Jenelle will be getting her ACTH in "gel" form through "intra-musclular" injection twice a day at home. The needle is an inch and a half long! If all goes well and she doesn't have serious side effects, her next hospital stay will be in two weeks for another Video EEG. She has only had 4 injections so far, but seems relatively unphased. She has been a little sleepier than usual, but that is all we've noticed so far. We also have to check her urine for protien and sugar, her stool for blood, and her temperature once a day while at home. We were given little "testing" devices for all of this, and instructions on how to do each as well (the urine and stool that is). We also need to check her blood pressure twice a week, and we purchased a stethoscope and infant blood pressure meter thingy (not sure what its actually called or whether I can pronounce it) A home health care nurse is going to visit us the next two days, then once a week to make sure all is well. Jenelle also needs to see our Peditrician once a week and the Neurologist every two weeks so they can monitor her progress. Needless to say, she is being well monitored, and we hope things remain the same (knock on wood.)

She is still having seizures, and some seem to be bigger than usual, but the same thing happened when we started Phenobarbitol, so we hope it is a trend. Ironically, Jenelle's only day with very few seizures was the day after the B6 treatment, and before we started the ACTH. The nurses at CHOC were absolutely wonderful. We had the same day nurse for 3 days, and she paraded Jenelle around the nurses station before we left. We hope to see her again in 2 weeks.

Big brother Jack is doing well and seems very happy to have Mommy home (I stayed at the hospital overnight the entire week.) He seems a little confused because things are obviously different, but is really holding up well. He has moments when he reminds us that he is 2 (ie: tantrums) but as long as we keep him active and playing, he seems to be at his best. Brett's parents brought him to the hospital on Tuesday and he cried at first and immediately wanted to go home. When he realized Jenelle was in the crib, he wanted to touch her, and eventually threw his sippy cup onto her head to wake her up! We thought it was important for him to see Jenelle in the hospital, so he could realize where she and Mommy have been. Overally, he's scared and confused, but glad things are somewhat normal with Mommy and Jenelle at home. He's picked up on my "pet name" for Jenelle and calls her his "Baby Girl!"

So now, we are at home and keeping things clean and sterile. We've made Jenelle's room at the "sterile zone" and plan to keep her in there as much as possible, or in her pack n play outside in the living room. She will be out of daycare for 6 weeks, and hopefully not back in the hospital too soon. Brett and I are holding up well. We have our moments - its not easy to see your child be poked and proded while they are screaming! These next few weeks will be difficult, but we'll get through it, and hopefully our little girl will be a new person!

Monday, September 29, 2003

It was a long weekend and Brett and I seemed to have changed our minds hourly about which treatment to begin for Jenelle. After much thought we decided to go with the FDA approved ACTH treatment as our first choice. We still have a prescription of the Vigabatrin coming from Canada in case we eventually need it. Basically, although the potential side effects of ACTH will be difficult, they are not permanent. Brett has had poor eyesight all his life, and he said he didn't want to risk that for Jenelle, in that the vision loss from Vigabatrin is permanent. Also, we know what the long term results are with ACTH, whereas there are no long term results from the Vigabatrin, so we just didn't want to regret using it 20 years from now unless we really needed to use it (i.e.: if ACTH doesn't work.)

Jenelle was admitted to Children's Hospital Orange County and we started another Video EEG for her B6 treatment. Once they were ready to do the B6, Jenelle had to be taken to the PICU for the treatment. Apparently if she had truly been B6 deficient, the injection of B6 would throw her system into shock, and make her stop breathing. Better safe in the PICU than sorry! Jenelle did fine with the B6, and obviously, it didn't stop her seizures.

Jenelle had her spinal tap done the following day. The resident that performed the procedure said it went very well, and she got everything on the first "poke" with very little blood! We won't have those test results for at least 6 weeks. We will start the ACTH on Wednesday. Most likely, she'll stay in the hospital until Thursday or Friday at the latest. She has a private room which is nice, but also it was given to us because the ACTH will weaken her immune system. If all goes well and she is home on Thursday, she will go back in another week or two to repeat the 24 hour Video EEG to see if the seizures have stopped. If at that time, she is still having seizures, we'll wean her off the ACTH and start Vigabatrin.

Thursday, September 25, 2003

We traveled to UCLA to meet with Dr. W. Donald Shields who is in the Pediatric Neurology Department and is the head of UCLA's Epilepsy Program. While we were joking that we were there to check out UCLA as a possible college for Jenelle, we were very anxious to get some answers about her diagnosis of Infantile Spasms. Everyone at UCLA was absolutely wonderful, and we got a lot of straight-forward answers, as well as some choices to consider. Dr. Shields did not "sugar-coat" any of the information and spent lots of time talking with us. We also met his nurse Sue, and she spent a great deal of time with us answering lots of questions. She was absolutely wonderful and so very understanding and supportive. What a great team they were.

First, the "hard" facts... Dr. Shields confirmed that Jenelle's diagnosis is Infantile Spasms. We were not really questioning the diagnosis, but he pointed out two of Jenelle's EEG patterns, and said that unmistakably, those were signs of IS. In a way, it is comforting to have such confirmation and know what we are fighting. Dr. Shields considered Jenelle's history, and felt that her global delays were fairly severe. Because of this, he felt Jenelle has a strong chance of being a part of that "bad" 50% of patients with IS... those with the "bad" prognosis as well. Basically, for Jenelle to be in the "good" 50%, we need to hope that her seizures were there from day one, and that we just didn't recognize them, then this would be the cause of her development delays, and once we stop her seizures, she will develop "normally." He also felt that Jenelle has a 30% or greater chance of being Autistic, and a 30% or greater chance of developing another form of Epilepsy around the age of two called Lennox Gastaut Syndrome (LGS), which is similar to Infantile Spasms, but the prognosis is even more severe. If her seizures had gone unnoticed or untreated, she would definitely develop LGS. So, those are the "hard" facts based on Jenelle's history, from the nation's leading expert in the field. Dr. Shields treats only patients with this diagnosis, so he knows the statistics well.

So, we now have to make a decision between two drugs. One drug is the ACTH steroid. ACTH is FDA approved (and covered by insurance), begins in the hospital, is an injection that must be given twice a day for 6 weeks, has serious, life threatening side effects (including decreased immune system) and has a 50% chance of working. Once treatment begins, we'll know within 2 weeks if it is working, and if it stops her seizures, she is done with the drug in 6 weeks and may never need it again, unless she has a relapse. The side effects are reversible. The other drug is called Vigabatrin (Sabril) which is not FDA approved and must be obtained in either Canada or Mexico. Vigabatrin comes in pill form, and does not have the severe side effects associated with ACTH (including the fact that it will not alter her immune system, and she does not need hospitalization.) Vigabatrin has been in use everywhere except the US for 10 years, and has not been approved by the FDA because there is a report that some patients (1 in 3) experience partial and permanent vision loss (most end up with tunnel vision). When describing this "side effect" of Vigabatrin, Dr. Shields said basically we're choosing between a "mentally retarded brain" for life, or "vision loss", which of the two, the vision loss is acceptable if the brain can function normally. If it works, Jenelle could remain on Vigabatrin for as little as 3 years, or the rest of her life.

Both drugs have about a 50 - 70% success rate, and often times, one drug does not work for a patient, but the other will. So, it is possible that we can choose one drug, but end up needing the other two weeks later. Dr. Shields says he also has patients using both drugs at the same time. It just depends on what works for the individual to stop the seizures - sometimes each person needs a different "mix" for it to work. Dr. Shields agreed with our neurologists (Dr. Phillips) plan for treatment for Jenelle, starting with a B6 treatment, and the low dose of ACTH, if we didn't want to use the Vigabatrin. Dr. Shields also recommended doing a spinal tap to rule out three other rare metabolic disorders that can only be detected in the spinal fluid. He also recommended that we would be more comfortable treating Jenelle at CHOC since it was closer to home, but offered that they were a phone call away if we needed anything in regards to the Vigabatrin, if we go that route.

We spoke to Jenelle's Neurologist, Dr. Phillips on the ride home and again the next day about our options. Dr. Phillips does not want to start with Vigabatrin, and will not provide a prescription for it- he is just not comfortable with the ethical issues concerning his license and we understand. His reasoning for this is that Vigabatrin does not have any long term studies so there is no evidence that Jenelle's seizures could not return at age 5, and so on. ACTH has been used for about 50 years, and there is evidence that if it stops the seizures, it does so permanently. He said if we could get the Vigabatrin, he would help us use it. The plan as it stands today is that Jenelle will be admitted to CHOC on Monday, September 29 for a spinal tap, a video EEG and a B6 Treatment. We need to choose which drug we plan to start by Monday.

Brett and I realize that there is no "wrong" choice here, in that both will help Jenelle, but there are many things to consider with both drugs. We spoke to Dr. Shield's nurse Sue a few times since our appoitnment and she is making arrangements to fax a prescription to Canada for us to get the Vigabatrin - in case that is our choice. It would be so much easier if it were as simple as "it is a tumor and it needs to be removed", but with the choice of two drugs, with completely different and complex things to consider involving each, we really have a tough decision to make this weekend.

Wednesday, September 17, 2003

I spoke to Dr. Phillips today, and I informed him of our appointment with Dr. Shields at UCLA next Thursday. Upon hearing this, Dr. Phillips said that he wants us to wait on treatment until we see Dr. Shields, and at the very latest, check Jenelle into CHOC on Friday the 26th to begin treatment. Dr. Phillips said that Dr. Shields is one of the top 5 Pediatric Neurologist in the country, and probably the best of everyone in regards to Infantile Spasms. He was very excited, and wanted to hear what Dr. Shields recommends. Dr. Phillips also told us that Jenelle's case is so interesting, he would have no problems if Dr. Shields wanted to keep Jenelle at UCLA for treatment, but either way, he wants treatment to begin as quickly as possible after our consultation. This is very comforting to hear. We didn't really want the second opinion to confirm her diagnosis, but we think it will be very comforting and beneficial in helping us choose the best treatment for Jenelle.

We also spoke about the various treatment options, and he explained how we will begin the ACTH, if that is the route we choose. Most likely, Jenelle will be admitted to the hospital on Friday, September 26th, and he will start an IV first with a Vitamin B6 injection along with an EEG running. He said within an hour of the Vitamin B6, we should know whether or not Jenelle's seizures are from a Vitamin B6 deficiency, and if so, we may not need ACTH at all. This is also very encouraging. So, we are in a holding pattern until next Thursday! We plan to enjoy the weekend with Jenelle and get the home organized for this long road ahead whether or not it be UCLA or CHOC.

Tuesday, September 16, 2003

Brett spoke with Dr. Phillips on the phone today, and he informed Brett that after reviewing all of the results from Jenelle's 24 hour Video EEG, he is now convinced that her diagnosis is Infantile Spasms. He wants Jenelle to start the steroid treatment as quickly soon as possible, and spoke to Brett about our treatment options. Our choices are either ACTH (steroid injections) or Topomax. He believes the ACTH is aggressive and has the best overall results, however unfortunately, it also has the worst side effects. If we start Jenelle on the ACTH, it is possible to do another EEG in a week, and we will know that quickly whether or not it is working. Though the side effects are risky, Brett and I feel we should give Jenelle every possible chance to beat this and we are inclined to go with the aggressive ACTH. We still are still deciding though.

Regardless of which drug we use, Jenelle's immune system will be decreased, and we will need to limit visitors at the house, and our activities during this time. Jenelle will be out of daycare for at least 7 weeks so that she is not exposed to any sickness at daycare. CHOC hospital encourages visitors, but they should be healthy, and use precautions so as not to expose Jenelle or other patients to any sickness. Dr. Phillips gave us a day to discuss our options, and because I had some more questions, we planned to talk the next day about our decision.

Friday, September 12, 2003

Brett and I have been overwhelmed by the many calls and emails of support, love and prayers for our family. We are still trying to come to terms with our emotions and with trying to make such quick decisions for Jenelle. This has all happened very quickly, and it helps to know we have so much support and love. Thank you.

Jenelle's 24 hour Video EEG began on Thursday, September 11, 2003 at 11:00 a.m.. She was released the next day about the same time. It was a little weird checking her into Children's Hospital on such an emotional anniversary as September 11. The test went well, and I stayed with her the entire time, and Brett only left that night to take care of Jack. I "marked" many, many "events" that may or may not have been seizures - over a hundred I believe. Dr. Phillips arrived the next morning and met with us before releasing Jenelle. He studied some of my marked events for about 10 minutes and felt some were seizures, and that some were not. He is still not certain if she has Infantile Spasms which means he was not ready to start the aggressive treatment that day. The VEEG results will take two days to process, and we will talk with him again on Monday. Because we confirmed that Jenelle is having seizures, he placed her on Phenobarbital which is an anti-seizure medication common for patients with Epilepsy. Jenelle definitely has Epilepsy, what form we are not certain. True "IS" will not respond well to the Phenobarbital (meaning the seizures will continue) so that may help us in the diagnosis.

Through another Mom friend from daycare (the same who suggested Jenelle might be having seizures) we were given the phone number for a parent who's daughter is a patient of Dr. W. Donald Shields at UCLA. Dr. Shields is the leading authority on the West Coast (if not the nation) for Infantile Spasms. She gave me a private number for his personal nurse assistant, I left a message with her during the night of Jenelle's VEEG. The nurse called us back minutes after Dr. Phillips left Jenelle's hospital room. We mentioned UCLA to Dr. Phillips, and he was all for us contacting them as well. Dr. Shield's nurse got some more information about Jenelle and her history, and said she would speak to Dr. Shields that afternoon to see if he wants to personally see Jenelle. She promised to get back to us that day, and she spoke to Brett later in the day informing him we would be seeing Dr. Shields on Thursday, September 26, 2003 at 1:00 p.m. When I originally spoke to Dr. Shields's nurse, she said they knew Dr. Phillips, and we were already seeing one of the best in regards to Epilepsy. That was comforting.

So, we had some more time to wait, and now an appointment for a second opinion. It is still very possible that Jenelle could be back at CHOC next week sometime to start the steroid treatment. Regardless, we do know that she is having seizures, and we need to stop them in any way possible so we can avoid any type of brain damage. At least we know have some idea of the direction we need to go.

Tuesday, September 09, 2003

Just minutes after I sent an email to family updating them on the EEG test, our neurologist Dr. Phillips called. Sometimes quick responses are not the best news.

Jenelle's EEG was abnormal, and she is having seizures. On the phone Dr. Phillips wanted me to describe the seizures I've seen Jenelle have, and after that brief discussion, he asked us to come in for more discussion about treatment. He told me on the phone that he though Jenelle might have something called Infantile Spasms, and suggested I research the internet before our meeting to learn more. Of course, I searched the internet, and what I found was pretty grim. On this day, Brett and I met with Dr. Phillips to discuss the diagnosis and treatment.

Dr. Phillips is 95% sure that Jenelle has Infantile Spasms ("IS"). This is a rare form of Epilepsy, and also the most devastating. What I learned from reading the National Epilepsy website is that IS seizures are subtle, more like "spasms", and can sometimes looking like "tummy crunches", all of which we have been observing in Jenelle. Also, IS has an EEG pattern that is "chaotic", with no regular rhythm (I don't know how to spell the technical word for it). Jenelle's EEG patterns fit this description as well. Of the patients diagnosed with IS, 50% have it due to an "unknown" cause. The other 50% have it because of other underlying neurological problems. The "good" 50% usually have an excellent prognosis, and after treatment, they end up seizure free, and develop normally. The "other" 50% do not have a good prognosis. Of that 50%, 80% end up with severe mental retardation, and 20% of that 80% do not live past the age of 5. The "seizures or spasms" do not respond to normal anti-epileptic drugs, but need to be controlled because once they become more severe, they can inflict brain damage. Many children if untreated can even enter a seizure or spasm state permanently, in rare cases. So, in our case, time is of the essence.

The usual treatment is use of steroids, and one in particular called ACTH. This is a short course, but has some serious and potential life threatening side effects. 60 - 80% of patients respond well to ACTH and end up seizure free. Other steroids are also used (Tomomax and Predisone) and they have a similar, but smaller success rate. The Ketogenic Diet also works well with IS patients, but Dr. Phillips feels that this is not a first step we should consider. His office is setting up a team to begin administering this diet to patients, and it is something Jenelle may need down the road.

Regarding Jenelle... she has some positive things on her side that are hopeful. All of her previous tests (MRI, Blood work, Metabolic test, etc.) were normal, also, she is improving every day and progressing well in her development, and she is healthy. All of this helps her chances of landing in that "good" 50%. We also must realize that Jenelle had problems before the seizures started, so if there is an underlying neurological problem we have yet to diagnose, that may place her in the "other" 50% category.

Our next step will be a 24 hour Video EEG, and this will be done either today or tomorrow, depending on scheduling with CHOC. This is basically the same test she had on Friday, but for a longer duration and with video so Dr. Phillips can hopefully find many different types of brain wave patterns as well as see her seizure behavior. He wants to do this to be 100% sure she has IS before we start the aggressive steroid treatment. If the VEEG confirms Jenelle has IS, we will most likely start treatment immediately. The treatment will keep Jenelle in the hospital for the first two weeks, and will basically kill her immune system. She will be out of daycare for at least 7 weeks.

Brett and I had a long discussion about this last night. I also spoke with our family friend who is also doctor and the one who recommended Dr. Phillips. He is confident we have the best neurologist in Orange County. He also recommended that if it were his child, he would seek a second opinion, but that he would not let the timing of that second opinion hold up the treatment. I am going to make some calls this morning to see if we can get an emergency appointment with a neurologist at UCLA for sometime Friday or Monday, hopefully after the VEEG. However, with or without the second opinion, Brett and I feel that this is a type of diagnosis that is pretty cut and dry, and we are confident that Dr. Phillips is being cautiously aggressive, especially in wanting to wait a few more days to do the VEEG.

Jenelle had a couple of seizures in front of Dr. Phillips, and he thought they were very subtle. He thinks we may have caught this extremely early, which is all the more promising for a better outlook for Jenelle. Most likely if this had gone un-noticed, the seizures would become worse and her development would regress. Again, time is of the essence so that we can prevent any brain damage to Jenelle, and so that her body has a better chance of responding to the treatment.

This is obviously going to be a difficult road ahead, but we are trying to stay optimistic. The percentage numbers are very hopeful. If we can stop the seizures, it is possible that Jenelle's development will improve dramatically, and she will develop very normally. We hope and pray this is the case for her.

Friday, September 05, 2003

Jenelle had her first EEG today at Children's Hospital. We will not have results for at least 7 days, but the technician said she got some good readings and overall it would be a good test and helpful to the doctor. It was a very easy test, and with Jenelle's bald head, it was easy for the technician to find the places to place the monitors.

They wanted Jenelle to be "sleep deprived" for the test, and instructed us to "wake" her at 6:00 a.m., and to keep her awake until the test at 11:00 a.m. Jenelle usually wakes up at 7:30 or so, so the early hour didn't upset her too much. She had no problems staying awake until it came time for us to drive to CHOC... ah, the magical car ride parents usually love to use to put their children to sleep! Brett drove while I sat in the back next to Jenelle and tried to keep her awake by bumping her seat and opening her eyes. It was a difficult 10 minute drive, to say the least. Once we were at the hospital, I took the very sleepy Jenelle over to the drinking fountain where I put her feet under the cold water... worked like a charm!

Just as we met the technician, and before Jenelle was hooked up to the EEG, Jenelle displayed the behavior that has concerned me, and that I feel may be possible seizures. Both the technician and Brett saw it, for Brett is was the first time to see this. The behavior is like a "startle" reflex, but Jenelle will open her eyes wide and make a funny face... sometimes her arms will jerk out as well. I was thankful the technician saw it, so at least they knew what I was trying to describe. Jenelle did more of these during the exam, and I am thankful that we may have an answer either way about the seizures. During the test they used a strobe light that made her cry, and then tried to get Jenelle to fall asleep. Of course, Jenelle didn't fall asleep, but after a while the technician said she got some good readings and they decided to end the test. They did not say more than that, but Brett noticed many times during the exam the two technicians were pointing to their computer screen and whispering. As soon as we were out of the elevator, Jenelle fell asleep and slept most of the afternoon.

Jenelle now has her two front teeth! The first one cut through on her Daddy's birthday last Monday, and the second just over the weekend. The great thing about this is that during these last few days, Jenelle learned to grab a washcloth placed in her hand, or grab her shirt and chew on it for relief. This is a major milestone in that other than her thumb, Jenelle does not put anything in her mouth, let alone grab foreign objects for any length of time. What a great improvement!

Tuesday, September 02, 2003

Jenelle started Occupational Therapy today. The first meeting was mostly evaluation and the therapist taking notes. This therapy is taking place at Grandma's house since that is the day that Grandma watches the kids. After discussing many things, the therapist said she feels Jenelle may have "sensory defense issues", meaning Jenelle is not grasping objects because she does not like the feel of certain textures.

I laughed because it sounded similar to obsessive compulsive behavior, and she said it could be similar, and if someone in the family was a little obsessive/compulsive, it could be related. Hee hee, for those who know me well, all I can say is "guilty". Heaven forbid Jenelle picks up my strange habit of buying things in pairs at the grocery store, or the "unique" way I eat M&Ms. Anyway... it is encouraging though because she said if this is the problem, it can eventually be corrected with therapy. Great news!

Friday, August 29, 2003

I spoke with Dr. Phillips today and he informed me that Jenelle's recent test results were normal. The tests included a study for metabolic disorders, a test for a chromosomal disorder called Praeder Willi Syndrome and a panel on her chromosomes for any abnormalities. Jenelle's chromosomes are a "46XX", which is normal for a female (would be XY if she was a boy! ;) This is really great news, we are so thankful, and yet, still no answers.

Also, on this day I scheduled Jenelle's ABR hearing exam for November 21, 2003. The hearing exam must be done while Jenelle is sedated, so again, like the MRI, there is a long wait. I spoke with the Audiologist yesterday, and she said we would have the results immediately after the exam, so that is encouraging.

They say to have a child with a disability is like going through the grieving process, because you "mourn the loss of the perfect child." Prior to getting the DNA test results, I really started to experience these emotions. Simple, everyday things like going to Babies R Us for formula, or going grocery shopping are a constant reminder that our 10 month old is not like other babies her age. I see parents with children "sitting" in the carts, pulling their parents hair, or tugging their arms, or pulling boxes off shelves - it is very depressing. For me personally during this time, I could be fine one minute, then crying the next. I will be happy while grocery shopping, and in tears when they ask if I want to "donate a dollar to Jerry's kids". It truly is a humbling experience. The news of the normal results is a great relief, but still we have a lot of questions. On a personal level for me, I have started to refer to Jenelle as a "special needs" child, which I feel may be a good sign that I'm learning to accept this challenge in life.

Thursday, August 14, 2003

Just prior to Jenelle's well baby visit, I spoke with another Mom from our daycare who is a speech therapist. She asked me if Jenelle was having seizures, and I answered quickly, "No". She then asked, "Do you know what an infant seizure looks like?"... "Uh, no!" She suggested that I call Dr. Phillip's office and ask them for things to look for in an infant seizure. I made the call, and they provided me with lots of information, and suggested I keep a diary of Jenelle's behavior for the doctor to review at our next visit. Sometimes you can find a pattern. I learned that an infant seizure is not what we typically think of in a seizure, like a Grand Mal seizure in an adult. An infant seizure can be very subtle, and sometimes can only be detected by a stare or sudden widening of the eyes. Some infant seizures can have a jerk or two, like they are off balance, or can even be a change in breathing. A child usually does not have a full Grand Mal seizure until they are a little older.

Over the next few days, I started to notice some of this behavior in Jenelle, especially during meals and in the mornings. I mentioned this behavior to Dr. Patel at her well baby visit, and she told me to ask Dr. Phillips for an EEG exam (I don't know the technical word for it, but it is an exam that monitors the brain waves for seizure activity.) That night, I emailed Dr. Phillips with a description of some of the behavior I saw in Jenelle, and he responded quickly that he wanted to order an EEG, and he thought it was a good thing to explore. He also suggested we try to video tape some of this behavior.

Whether or not Jenelle is having seizures, we are not sure, but hopefully this test will give us some answers one way or the other. So, once again, on to the insurance authorization waiting game!

Tuesday, August 12, 2003

Jenelle saw Dr. Patel today for her 9 month well baby check up. We just love Dr. Patel, because she has been so concerned, and so involved in helping us with Jenelle's issues. Jenelle is weighing in at 22 pounds, and 29 inches - still in the 90th percentile for her age, which is great!

Dr. Patel is putting in for 3 referrals for Jenelle. I told her about the Occupational Therapy evaluation and their concern with Jenelle's tongue tie. We are being referred to a surgeon so Jenelle can get the tongue tie clipped. Not sure what that involves, but I hear its very easy to do. Jenelle is also getting a referral to an audiologist for a hearing test as requested by OT as well. And the final referral for Jenelle is to a physical therapist named Tim Healey. We were given his name by a friend and Dr. Patel had nothing but great things to say about him. She felt if he was covered by the insurance, it would be worth a consultation. Dr. Patel was concerned that Jenelle was only getting an hour of Physical Therapy a week and felt she needed at least 2 hours, but perhaps when the OT kicks in, that will make a difference.

Many of you have suggested we check out Jenelle's immunizations - there have been reports that immunizations can cause some of the delays Jenelle is having. Without getting too technical, Dr. Patel assured us that her office has been using the proper immunizations for over a year, so Jenelle would not have been affected by the immunization mixture (thimizerol) causing these delays. Dr. Patel said that in an infant with development delays, the immunizations are more important in order to build up her immune system. There are some concerns with giving the MMR (measles, mumps and ruebella) shot to infants with development delays, and Dr. Patel felt that when Jenelle needs her MMR (at her 12 month visit) it may be wise and safe to public services to have it done as they can give Jenelle the MMR in a separate form, spaced out on her body rather than all at once in one location. Yes, technical sounding I know, but it does makes sense to me. Brett actually started laughing because Dr. Patel and I understood each other, and he said he didn't know what we were talking about! ;)

So, Jenelle is doing well. She is not too big for her age, and she is showing some improvement, which is hopeful. Please continue to keep us in your thoughts and prayers. That means so much to us right now.

Monday, August 04, 2003

Jenelle had her initial occupational therapy (OT) evaluation today with two therapist from The Children's Therapy Center. This evaluation was done so we could get authorization from Regional Center to start Jenelle on OT in addition to her Physical Therapy. OT is therapy for "fine" motor skills.

I'm so ashamed of myself. They asked me to fill out some paperwork, and here I am all ready to write down everything Jenelle "isn't" doing, and the first question on the form was "What are you child's strengths and qualities?" ... WOW, I guess I haven't been thinking in that perspective! It took a long time to think about it, but Jenelle does have strengths and qualities. She is an easy baby, sleeps well, adapts to any environment, and is improving with her physical therapy. She can suck her thumb with the best thumb suckers and is generally a very happy, content baby. And, she is very beautiful, though I'm sure I'm very biased.

Getting back to the evaluation - Jenelle qualifies for OT, not a big surprise there. One of the new things we discovered is that Jenelle has a very thick tongue, and very tight cheek muscles. This is not only going to cause a speech delay, but will inhibit her eating ability. They asked me to spoon feed Jenelle and watched her eat. She eats by using her tongue mostly, and does not use the chewing motions that most babies her age are learning. Jenelle has always been "tongue tied" (where the bottom part of the tongue is fully attached to the bottom of the mouth) and our pediatrician has been against having it cut. They recommended Jenelle have it cut as the tongue tie will only inhibit her ability to progress. Her 9 month well baby check is coming up, so we'll mention it at that time.

Oh yes, and the really great news to report is that Jenelle is finally rolling! She discovered and mastered the ability to roll from her tummy to her back, and sometimes rolls all the way across the room, only stopping when she gets caught on the corner of the couch or TV. I think she is enjoying this as a way to explore and discover her world. Brett and I have noticed that Jenelle's delays have been consistently 4 months behind the time when Jack started doing these things. We can only hope that pattern continues. She has also started to "swim around" on her tummy in an effort of what looks like the beginning stages of crawling. I'm sure that is a ways away, but its great to see such improvement. Physical Therapy is most likely the cause of this great improvement!

Tuesday, July 22, 2003

Jenelle saw Dr. Phillips today for her follow up after the MRI. While we were hoping for some further explanation about the MRI results, and maybe some more answers, Brett and I left feeling more confused than we were before we got there.

The really great news (that we already knew) was that Jenelle's MRI was normal. While that doesn't explain the cause of her delays, it does answer a lot of questions to the neurologist, and rules out a lot of really bad things. Among the many things, we have ruled out stroke, brain damage, cerebral palsy and brain tumor. We realize that we are very fortunate to have such a great result. Dr. Phillips talked a long time with us about "further testing" and where we go from here. He believes there are a few more tests we can do to rule some other things out, but that Jenelle's situation might be a case where we may never find a "diagnosis". Also, at this point, any "diagnosis" is something that doesn't really have a cure, so we should continue as we are with the therapy as that is really the only thing that is helping. Nothing indicates that Jenelle's condition is life threatening.

Dr. Phillips explained that we should treat Jenelle like a "normal" child, and that she will be able to do "what we expect" of her. So, if we carry her around, and treat her like a child that belongs in a wheelchair, she will be a child in a wheelchair, and so on. He also said Jenelle was "going to be who she was going to be", which really didn't make much sense to us. I'm not sure if he was trying to give us a dose of reality, or trying to sugar coat the situation, but it was obvious he was trying to say that we may never know exactly what is "wrong" with Jenelle. Brett and I are fine with that, but we do understand how some parents feel in this situation, and how it would be better if we had a "name" for what is "wrong" with Jenelle. We want to do some more tests, but how far we will eventually go in that process we do not know at this time. We know that we are fortunate that Jenelle is happy, healthy, and very loved.

Dr. Phillips is going to run some more tests including genetic and metabolic tests to further rule out other possibilities. He is also testing for Prader Willi Syndrome, a specific chromosomal disorder that effects the hypothalamus in the brain. He told us not to research it or worry about it (yeah, right) as it was just something he wants to rule out. They had to take blood and urine for the tests, and that was quite an ordeal that took all day. For her blood test, they had to poke her twice (tough to find a vein on her chubby arms), and took 7 small viles of blood. She was such a trooper, and handled it well without any anesthesia. Obtaining the urine sample was another difficult task in that they had to apply a "bag" to her and hope that it would catch her urine in her diaper(I would assume this is easier for little boys.) When I brought in her first sample, it wasn't enough, so we had to wait another couple of hours to get some more. Eventually we got enough for the lab - but it wasn't easy trying to make a 9 month old "pee" on command!

Jenelle's next appointment with the Neurologist is in 4 months (November). Jenelle is really doing well in her physical therapy, and may be starting occupational therapy in the next few weeks. That is encouraging!

Tuesday, July 08, 2003

Brett spoke on the phone to Dr. Phillips today regarding Jenelle's MRI results. Jenelle's MRI was"normal", but it still leaves us with many questions about her delays. The good news with this is that we can rule out any brain tumor or other significant problem. I'm sure we'll get more details from Dr. Phillips at our next appointment on July 22, 2003.

Later, Jenelle saw Dr. Florencio Ching for her initial Opthamology appointment. She was such a good girl during the exam and only fussed once when he had to put drops in her eyes to dilate them. Dr. Ching examined her vision and said that she appears to be farsighted. Upon examining her eyes after being dilated, he said everything was normal, and that the optic nerve and retna were attached.

Dr. Ching felt that Jenelle's vision is "developmentally delayed" - it should be better for her age, but at this point, her vision is still in the development stages, so it is a little early to diagnose a problem, if any. He reviewed her MRI report and said there was nothing there to indicate a vision problem.
Dr. Ching will see Jenelle again in 4 months to assess her vision at that point. Overall today we've received good news, but also we still have a lot of questions unanswered.

Tuesday, July 01, 2003

Jenelle had her MRI today. It was a very long day, but overall she tolerated it very well, and she was just perfect! Though Jenelle was a trooper, the day wasn't flawless. I'm a firm believer that the many prayers and positive thoughts everyone has been giving Jenelle helped our luck today.

The whole event started the night before when I tried to keep Jenelle awake as long as possible, and fed her a large meal at around 10:30 p.m. The pre-op instructions said that she could not have any "solids" after 3:30 a.m., and nothing at all after 7:30 a.m. I put her to bed at 11:00 p.m., and woke up at 3:00 a.m. to give her a bottle of formula. My goal in keeping her up that late was so that she would sleep most of the morning time when we couldn't feed her. It worked like a charm. I also woke her up at 7:00 a.m., and gave her a few ounces of pear juice - she was so sleepy, she didn't even take the whole bottle.

We arrived at St. Joseph Outpatient Pavilion and checked in at 9:30. Jenelle's MRI was scheduled for 11:00 a.m., but for whatever reason, we had to be there at 9:30. She was starting to wake when I approached the front desk at 11:00 to find out what was keeping them from calling her back. Apparently our room had been given to another child in need, and we were next on the list. Soon we were taken back to another waiting area to wait for a nurse to come out to give us some details. As this small waiting room began to fill up with other patients that were waiting behind us, we realized something was wrong. Soon the nurse came out to tell us that the MRI machine was broken, but that they had a repair person there who could hopefully fix it. Jenelle was awake at this point, but not fussy, so we opted to wait a little longer.

Another half hour later, the nurse came out to tell us that they were still working on the machine. At this point we asked her to look into what appointment times we could get if we rescheduled. The two other patients behind us were older (ages 3 and I think around 7), but they too were getting hungry. Another half hour and the nurse came to tell us the machine needed another repair person, and we would have to reschedule. At this point, even if the machine were fixed, we lost the anesthesiologist for the day. The nurse went back into the room again to get the schedule, and then returned to tell us they had an opening across the street at St. Joseph's Hospital, and they would take Jenelle and one other patient immediately. What a relief!

We then walked across the street to the hospital, and they took Jenelle into the pre-op room to prepare her for the anesthesia. We gave them some history, changed her into a gown, signed information forms for both Brett and I, and then took off all of our metal jewelry - apparently the MRI uses magnetics, and you can't have any metal on at all, or it might come flying off. The Anesthesiologist spoke with us briefly about the procedure, and said we could be with her when he used a gas mask to put her to sleep, but that we had to leave as they administered her IV. The IV was necessary not for anesthesia, but to pump diagnostic fluid into her so that her vascular system would show up on the MRI. We were told this was an important tool when searching for tumors. He also warned me that with her chubby arms and legs, it might be difficult to find a vein.

I held Jenelle as we walked her into the room and placed her onto the MRI machine. The doctor held a mask over her face, and she tried to wiggle away, but eventually she fell asleep with her eyes partially open. Brett and I then left to wait for the doctor to get us once the MRI was complete. After about 40 minutes, we were taken to the recovery area, where Jenelle was alert and cranky. The anesthesiologist told me to hold her because her smelling me and feeling me so close would help her to calm down. They told us the anesthesia would make her cranky for about a half hour, but then she would settle down and be sleepy the rest of the day. I gave her a bottle and once they removed her IV, she was calm and no longer crying. I asked the doctor if they had a difficult time trying to find her vein, and he just smiled and said, "yes"... apparently, from the marks on her arms and legs, it took about 5 pokes to finally find a vein. Fortunately this was done after she was asleep. Once she was released, we took her home and she ate again 2 hours later and went to bed early that evening. I expected her to wake up that night, but she slept though the night and into the late morning the next day.

Wednesday, June 25, 2003

Jenelle had her first session with the Physical Therapist today who met us at home to work with Jenelle. After a few minutes of working with Jenelle, she began to become fussy and show that she was upset. The therapist said that is normal because you are basically forcing the baby to start doing things they don't normally do. She worked with Jenelle until she wouldn't stop crying, which indicated that Jenelle had had enough. Most of the therapy involved stretching muscles, and working with her hands and feet to improve her sense of feel with different textures. Our short term goal is to make Jenelle more aware of her body (and I thought girls didn't become self-conscious about their body until they hit puberty!) and to begin to grab and hold things. We are also trying to strengthen her trunk muscles so that she can hold her self up a little better. This therapist will continue to come to our home once a week until we have our next evaluation with Regional Center in November.

We have an appointment with the Pediatric Opthamologist for July 8. They wanted to wait until after Jenelle's MRI because they will need to see it to help determine a diagnosis. In the last month, we've started to notice that Jenelle has an eye that points inward, similar to what Brett had as a baby. We hear things like that can be corrected with patches, glasses, and sometimes even surgery. We'll know more on the 8th.

Brett and I are seeing improvements, Brett thinks in some areas she is starting to act like a 4 month old. On June 22, Jenelle finally rolled over from her tummy to her back, and is also getting her butt in the air a little more while on her tummy. Its like she wants to crawl, but the upper body strength is pretty non-existent. Also last week, Jenelle was lying tummy down on my chest and grabbed at my shirt to put it in her mouth to chew on (she is teething). I've never been happier to wear a shirt wet with drool as this was a first for Jenelle. She also is making more efforts to put a hand on her bottle, and even pushed it out of her mouth recently when she was full. These are huge improvements!

Wednesday, June 04, 2003

We met with Regional Center today to discuss Jenelle's ongoing Physical Therapy plan (Her Individual Family Service Plan, or IFSP). Jenelle will receive Physical Therapy for a hour a week, hopefully starting as soon as next week. Regional Center has been wonderful, but we have to "jump through hoops" in the way they process things, so it does take some time. The Physical Therapy will be in home, and will involve us working with her throughout the week. Our long term goals over the next 6 months include getting Jenelle to "sit up" unassisted, feed herself a cracker, show anxiety when not around familiar faces and to play with her toes.

At this point, we are starting to see some improvement in Jenelle since her 6 month check up last April. She is now bearing weight on her legs (especially after we have been working with her on this) and does grasp at the rings we've hung on her infant carrier. We also got the referral to the opthamologist, but when we contacted them about an appointment, they said it would be best to wait until after her MRI, as the opthamologist would want to see those results as well. We also scheduled Jenelle's MRI for July 1, 2003, which is the soonest appointment they had available.

Friday, May 16, 2003

We had our first evaluation today with Jenelle's Neurologist, Dr. Steven Phillips. Because of a connection with a very good family friend, we were able to get an early appointment for Jenelle, rather than wait until the end of July. Dr. Phillips seems to be very good at what he does, is up front and honest about what we are going to be facing. He ordered an MRI, and requested it "stat" so that we shouldn't have to wait very long once we get authorization from our insurance. We are told that the process for the MRI will involve Jenelle being sedated, possibly intubated and may also require her to stay the night in the hospital for monitoring. Basically, she is going to be "put under" like anyone would be for surgery.

He gave us an initial diagnosis of Hypotonia, which means low muscle tone and function. He told us that visually speaking, the left side of her head appears to be smaller than the right, which would indicate that there may be something wrong with the left side of her brain. When he saw the shape of her head, he seemed concerned, without really having to look at her development delays. The left side of the brain does control motor function, as well as speech and cognitive ability, so that would make sense with her delays. He didn't say much more than Hypotonia, but when I mentioned Infant Stroke, he said that was another strong possibility.

So now, we wait for our insurance to approve the MRI request. Dr. Phillips told us not to be concerned initially when we have the MRI is the technician says something about what they see. Infant MRIs need to be read differently than an adult MRI, so what looks bad for an adult, may not necessarily be bad for an infant. We should not expect the report to be done for at least 2 days after the MRI. He was going to have the results read by a specialtist who is experienced in reading infant MRIs. Our next appointment with Dr. Phillips will be in 2 months, on July 22, 2003. This appointment is still earlier than the initial appointment we were given without using our connections. We are forever grateful for our good friend's assistance in that regard.

Tuesday, May 13, 2003

We met today with the Physical Therapist at ICEC (Intervention Center for Early Childhood) for Jenelle's initial development evaluation. They checked all of her areas of development and confirmed that she is behind in fine motor, gross motor, and cognitive areas of development. They showed us a couple of things to work with, but overall it was mostly evaluation. They recommended that we try to get a referral to a Pediatric Opthamologist to have her sight checked. She can see things like light, but does not respond to colors or other stimuli when held in front of her face.

We were told to expect to hear from Regional Center at the end of the week to discuss Jenelle's "Physical Therapy Plan", and which programs she will start, etc. Her first appointment with the Pediatric Neurologist will be this Friday.

Friday, May 02, 2003

We had our initial meeting and evaulation with our Case Worker for Regional Center. She was very frank and honest, and also encouraging at the same time.

Jenelle's biggest problem at this point is her inability to use the right side of her body. We never even realized it, but she even tilts her head to the left and not the right. She has little strength in her right arm and hand, and appears to have pain when we turn her head in that direction. The encouraging news is that it just could be caused by poor muscle tone. In her early months, she may have tried to turn to that side or do things with her right hand, but because it was too difficult, she gave up, hence why she doesn't use it much and favors her left side. Since our visit with the Pediatrician, both Brett and I have been working with her to get her to support herself on her legs. She is improving, which is also encouraging in that we can work on a problem area, and she shows improvement.

Although she doesn't follow a rattle, or turn to the sound of noise, the intake person did feel that she can see and hear. She noticed Jenelle's eyes follow my voice, but she has difficulty straining her head to see me (I was sitting on her right side) Again, the encouraging part of this is that because of low muscle tone, she just could be giving up on trying to grab things or turn to sounds simply because it is too difficult for her. That can be improved with muscle tone.

Overall, she definitely felt that we can get Jenelle into physical therapy for an initial evaulation as soon as May 13, 2001. She was also very frank with us and said Jenelle's symptoms appear to be similar to Cerebral Palsy. That of course is just her opinion, and there are lots of tests to take before we make that diagnosis, only a neurologist can tell for sure. So we have a long way to go. She also stressed that we should try to push to get the neurological evaluation quicker!

We are waiting for our Neurological authorization, and an appointment with the Neurologist.

Tuesday, April 22, 2003

More about Jenelle

Re-written on August 8, 2006:

Welcome. My name is Kelly, and I am the author of this blog. I am married to a wonderful husband and father named Brett and we have two children named Jack and Jenelle. This blog was created as a way to update family and friends about our youngest Jenelle, who has special needs. That sentence seems so simple and yet there is no easy or simple way to describe Jenelle. She has literally stumped most of the world’s leading experts in child neurology yet technically all of the things we’ve tested her for have come back “normal”.

Jenelle’s biggest challenge is controlling her seizures. On top of that, Jenelle has very low muscle tone (hypotonia), cortical visual impairment (she’s blind), metabolic acidosis of an unknown cause and she has a G-tube for failure to thrive. Developmentally she is at the level of a 6 month old; she started sitting up in March 2006, she does not use her hands to hold anything and does not talk. She will laugh, giggle and cry when she wants.

Jenelle was born at 37 weeks after a difficult pregnancy. She was 6 pounds 14 ounces with Apgars of 8 and 9. Pre-term labor started for me at 28 weeks caused by a kidney infection that I had at the time. I was given Terbutaline, and placed on full bed rest the last two weeks of my pregnancy. At birth, we had no reason to believe that anything was wrong with Jenelle. My gut started to tell me something was wrong around 6 weeks when I noticed she wouldn’t smile, and that she didn’t grab at toys. She could barely lift her head, or support her own weight at 12 weeks. By six months of age, we knew she was delayed, but hoped it was due to her pre-maturity.

She was diagnosed with Infantile Spasm (seizures) at 10 months of age, and that is when things really began. Many medications, hospitalizations, steroid injections, status seizures, immune system compromise, therapy and endless doctor’s visits and specialists would eventually follow. About 9 months after the Infantile Spasms diagnosis, Jenelle was diagnosed with Lennox Gastaut Syndrome, a severe and rare form of Epilepsy that leaves most of its victims with severe mental retardation, if they live past age five. Though that last part is scary to hear, I’ve since met many, many families with LGS who have children in their 20s, 30s and even 40s. And although we use words like Infantile Spasms and LGS, the underlying cause of Jenelle's problems is still unknown.

Jenelle finally gained significant seizure control sometime in late July 2005. After that, her development really began to improve. We aren’t sure what is working exactly but we’ll take it. Welcome again and please feel free to comment from time to time.

Meet our Jenelle...

Our daughter Jenelle suffers from a rare form of Epilepsy called Lennox Gastaut Syndrome (uncontrolled seizures), global development delays, cortical blindness, low muscle tone (hypotonia) and "failure to thrive" for which she has a G-Tube. This "blog" is a collection of email updates to family and friends about Jenelle, and also has some thoughts from me (Jenelle's Mom) on occasion. To start at the beginning, please click on the archive link at the right for May 2003 - that is where the story/updates really begin. To learn more a little more about Jenelle, click on the link "Background on Jenelle" also found at the right.

Here are some statistics about Epilepsy:

"Epilepsy and seizures affect 2.5 million Americans of all ages, at an estimated annual cost of $12.5 billion in direct and indirect costs. Approximately 181,000 new cases of seizures and epilepsy occur each year. Ten percent of the American population will experience a seizure in their lifetime. Three percent will develop epilepsy by age 75."

Please check out Jenelle's Epilepsy Awareness Bracelet! (click on charity bracelets and scroll down) Right now, there is no cure for Epilepsy, however the fight remains strong. We appreciate your prayers and support - Thank you for visiting and sharing this site!

Monday, April 21, 2003

Tuesday, April 15, 2003

Frequently Asked Questions

How old is Jenelle?

Jenelle is 13 years old. We believe she started having seizures at age 10 months, or sooner.

What is Jenelle's diagnosis?
Jenelle's condition is undiagnosed. She has uncontrolled seizures that present in the form of Lennox Gastaut Syndrome (meaning multiple types of hard to control seizures). The cause of her seizures is unknown, but we believe she may have suffered some form of brain damage during development in utero. Because of her seizing brain, Jenelle has cortical visual impairment (is legally blind), low muscle tone, and is mentally retarded (functioning at the mentality of a 18 month to 2 year old child) and is fed by G-tube for failure to thrive.  In 2013, Jenelle was diagnosed with mild Cerebral Palsy.

What is Jenelle's prognosis?

Jenelle is medically fragile. When she was first diagnosed with seizures, our doctors told us that if we could not control her seizures, she would most likely not live past age 5. Obviously, we now have seizure control, and she is doing very well. Because she is undiagnosed, her prognosis is also unknown. We have been told that she will probably have a short life because she is medically fragile.  Now that she can walk, Jenelle is also at risk for elopement.  Jenelle requires 24 hour supervision for all daily living tasks, including sleep.

Is Jenelle Seizure Free?

No. We say that Jenelle has "seizure control", but that in no way means that she is seizure free. Jenelle has a few seizures a week, depending on her health. We see this as "seizure control" compared to the time when Jenelle first started having seizures (age 10 months) when she was having hundreds of seizures a day.

What do her seizures look like?

With Lennox Gastaut Syndrome, a child will have all types of seizures; grand mal, petite mal (absence/staring seizures), complex partial, myocloinc and atonic. Jenelle's most difficult to control seizures have been the absence seizures.

Here is a link to some videos that I have posted here in the past.

What therapies do you do with Jenelle?

Jenelle receives services from Regional Center and through our School District. She attends a special needs school where she receives various therapies, 6 hours a day, that include Physical Therapy, Occupational Therapy, Speech Therapy, Vision, Orientation and Mobility and other various inclusion type therapies with typical kids.

What equipment does Jenelle have?

Jenelle has a Convaid wheelchair stroller. She wears an AFO on her right leg to keep from turning in her ankle when she walks.  From ages 1 to 4, Jenelle used a walker/stander at school. We also used to use a Lecky Bath Seat during bath time, and our Peg Prego high chair for feeding until she was about 7 years old. I keep it lowered to the floor so she wouldn't tip it over.

What medications is Jenelle taking?

Jenelle is currently taking Onfi (for seizures), Felbamate (for seizures), Risperdol (for behavior), Trihexyphen (for muscle control), Melatonin (for sleep issues) and Miralax (for constipation), Clonazapam (for behavior), Zarontin (for seizures) and Jenelle has a VNS Aspire.  She mostly eats solid foods by mouth, and we use the G-tube for feedings when she is ill or post-ictal after a seizure. We also use the VNS Magnet to stop prolonged seizures and Diastat as a rescue med for seizures longer than 5 minutes.

What medications/treatments has Jenelle tried?

I strongly recommend the http://www.kidsepilepsy.com/ website. It is a database of medical treatments used for kids with epilepsy, including feedback on side effects, effectiveness and diagnosis. Below is a list of medications tried or currently in use for Jenelle:

still being used: No
effectiveness: Neutral
max. dose: 30mg

Corticotropin (ACTH)still being used: No
effectiveness: Negative
max. dose: 50 units per day

Pyridoxine (Vitamin B6)
still being used: No
effectiveness: Neutral
max. dose: 100 MG a day.

Vigabatrin (Sabril)still being used: No
effectiveness: Positive
max. dose: 750 mg, twice a day

Topiramate (Topamax)
still being used: No
effectiveness: Positive
max. dose: 100mg twice a day

Clonazepam (Klonopin, Rivotril)
still being used: Yes (for behavior - as needed)
Effectiveness: positive
max dose: 10mg three times a day

Lamotrigine (Lamictal)still being used: No
effectiveness: Positive
max. dose: 10mg twice a day

Felbamate (Felbatol)still being used: No, but added back in 2014
effectiveness: Positive
max. dose: 300mg three times a day

Ketogenic Diet - Jenelle started the Ketogenic Diet at UCLA on April 18, 2005 on a 3:1 ratio. After 3 weeks, Jenelle became very ill with meningitis, and was taken off the diet.
still being used: No
effectiveness: Positive

Phenytoin (Dilantin)still being used: No
effectiveness: Neutral
max. dose: 50mg a day

Diastat (Diazapam) (as needed for emergency)
still being used: Yes
effectivness: Positive
max dose: 10mg

Clorazepate (Tranxene - behavior drug)
still being used: No
effectiveness: Positive
max. dose: 3.25mg in AM & PM

Risperdol (behavior drug)still being used: Yes
effectiveness: Positive
max dose: 3mg twice a day

Zantac (for reflux)
still being used: No
effectiveness: Positive
max. dose: 2.5 ml twice a day

Miralax (for constipation)still being used: As needed
effectiveness: Positive
max. dose: 2tsp

Bi-Citra (for acidosis)
still being used: No
effectiveness: Positive
max. dose: 20mls three times a day

Vimpat (for seizures)
still being used: No
effectiveness: Positive
max. dose: 100mg twice a day

Banzel (for seizures)
still being used: No
effectiveness: unknown
max. dose: 600mg twice a day

Onfi (for seizures)
still being used: Yes
Effectiveness: Positive
max dose: 15mg in PM

Trihexyphen (for CP/Muscle control)
still being used: Yes
effectiveness: positive
max dose: 5ml twice a day

Zarontin (for seizures)
Still being used: YES
Effectiveness: Positive
Max Dose: 15ml twice a day

How do you get drugs from Canada?

Jenelle used Vigabatrin which is not FDA approved in the United States. In order to use this drug, we had to have our Neurologist provide us with a written prescription that we faxed to a pharmacy in Canada. In over a year, we only had one problem with our medication being held at customs. During that time, our pharmacy re-sent our prescription via Federal Express.

I recommend Mark's Plaza Pharmacy in Vancouver, Canada.

Marks Plaza Pharmacy
5760 Cambie St.
Vancouver, BC V52-3A6

Who are Jenelle's specialists?

Jenelle was followed by Dr. W. Donald Shields at UCLA for Neurology until his retirment in 2014.  She is now followed by Dr. Lily Tran at CHOC for neurology
Dr. Shaneen Idries at CHOC - Gastro Intestinal
Dr. Samuel Rosenfeld at CHOC - Orthopaedics
Dr. Sandhya Gudapati - Psychiatry
Dr. Joffrey Olaya - Neurosurgery
Dr. Richard Chang - Metabolics and Genetics

I think my child is having seizures, what do I do?

If you suspect your child is having seizures, you should contact your doctor and get a referral to a Neurologist. If you can, try to get into an Epileptologist, which is a Neurologist with special training in epilepsy.

Video tape your concerns regarding your child and anything you may suspected are seizures. Take it with you to the Neurologist. Request an EEG.

Every moment lost to seizures is a moment lost in development for your child. If you suspect anything, you need to act quickly and go with your gut instinct.

How may I contact you? jenellesmommy (at) gmail (dot) com