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.

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.

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.

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.

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.

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!

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.