It's been a very busy day, head is spinning!
First up was pool group at the hospital. Taylor was pretty mellow in the pool this time, she didn't do her usual amount of kicking. Poor girl was exhausted from a rough night, I think she just wanted to be held in the nice warm water and not have to work at all. So I let her do just that and she enjoyed herself. Mom and I were out one day when I had respite, and we popped into Swimco. We were flipping through the kids suits just for fun and came across it, then we noticed the logo and Supergirl name on it. Mom ripped it out of my hands and said, "I'm buying it!". Seriously, there couldn't be a more perfect bathing suit out there for my Supergirl...thank you Mom!!
Up next was Neurology. We had a long talk about Taylor's lack of progress in the oral feeding department, and the prospect of a g-tube surgery. These weekly NG tube changes are just so traumatic for little Taylor. Dr. Bello is very supportive of the g-tube. He has put in a referral to GI for us.
Taylor had a really bad night last night. She woke up screaming at 3am. When I went into her room she really scared me. At one point I thought I was going to have to call 911. She was screaming so hard and wouldn't settle. She was having seizure after seizure after seizure. One after another, and they were so intense. Because they were so close together and her jumps were so much more intense than usual, it almost looked like a convulsive seizure. Haven't seen her do that before, and don't want to see it again thank you very much. She seemed so scared. After a few minutes they started to slow down, but she was having such a hard time settling. I brought her into our room and put her in between Francis and I. I don't know if it was knowing we were there holding her, or just time, but she slowly started to settle and fell back to sleep.
Dr. Bello thinks this could be the start of things changing seizure wise for Taylor. We also told him that the seizures are back up way too high. They've been increasing over the last couple of months, back up to hundreds a day. They had gone down to less than 100 a day after we started the Ketogenic Diet. But they have crept right back up. Dr. Bello says "the honeymoon's over". Having a hundred seizures a day sure isn't a honeymoon in my books, but it was a hell of a lot better than what it is now. So, is the diet even working any more? Is the Phenobarbitol working? Perhaps not, but the combination could be keeping convulsive seizures at bay for now.
He wants to do an overnight EEG in the next few weeks to get as much information as possible on the patterns of Taylor's seizure activity, what happens over longer periods of sleep, etc. We haven't had one of these before, had loads of EEG's, but they've all been around an hour. For this long term monitoring she gets hooked up to all the electrodes, then we are admitted to a room on the unit that has video monitoring. So they can see the data from the recording together with the video footage of Taylor. I'm quite anxious for these results and what they'll show.
Treatment wise, Dr. Bello said we have a few options right now...
- a vigorous trial of drugs over the next 6-12 months, all of which have varying nasty side effects
- Felbamate - a drug that he relates to chemo therapy, which has shown fatal liver toxicity in adults
- Intravenous immunoglobulins (IVIG) - a blood product, a pool of antibodies, he referred to it as the a-bomb treatment to boost immune response
How do we decide, we're far from professionals here, no experience. Although, a vigorous trial of drugs over the next year is NOT high on my list. We asked Dr. Bello, if Taylor was his daughter, what would he do? He said he would try the IVIG first. There's no serious side effects, and we would know it's effectiveness relatively soon.
IVIG is a blood product. It is a sterile solution of concentrated antibodies extracted from healthy donors and administered into a vein. We all have antibodies that fight infection. There is growing evidence that children with intractable epilepsy, can have an immune response that attacks their own brain, which can cause the intractable epilepsy. It's a 4 hour treatment via IV in the hospital every 3-4 weeks, for at least 6 months. And thank goodness we live where we do and this treatment is covered, because this ranges between $5-10K per dose. YIKES.
Back in the summer Dr. Bello had started the process of filing the appropriate paperwork to the government to get approval for genetic testing. Approval has come through, so they will draw the bloodwork from Taylor when she's admitted for the EEG. Anxious to see if this testing is going to reveal anything.
Whew, that was a LONG neuro appointment, Dr. Bello was in with us for an hour and a half. He is wonderful. Very compassionate, encourages as many questions as we can possibly think of, gives us as much info as we want, never makes us feel rushed. I am so grateful that he's following our little girl.
Tonight we headed back to the hospital for a PUF info session. Program Unit Funding (PUF) is funding that is available through Alberta Learning for children with moderate-to-severe needs in the areas of speech-language, fine motor, and/or gross motor skills. Your child would receive additional supports (e.g. aide time, therapy intervention) in his/her areas of need in an Early Childhood Services (ECS) program. The funding is available for a maximum of 3 years. Your child's therapy team will formally assess your child in all three areas (speech-language, fine motor, gross motor). The scores received on the formal assessment will help determine whether your child will quality for PUF. Scores must typically be in the severe range in order to qualify. Test scores are submitted to Alberta Learning who makes this final decision based on the information provided. For Taylor, this is just a formality, she is severe in all areas and will qualify, no question. I am so incredibly grateful that we have this available to help Taylor, that we live where we do. But I would give anything for her to NOT qualify, because that would mean she was a typically developing child and not one with 'severe' special needs.
There are a variety of agencies who provide PUF across Calgary: centre-based programs, home-based programs, combination programs. In a week's time there is a PUF resource fair, all the agencies will be there to talk to and help us in making our decision of which program to put Taylor in.
Never a dull moment...sooooo much on the horizon to think about. I'll lighten things up to end this post with a picture of Marissa, in her scrubs, assisting with a tube feed. SO cute!
