I realize I haven't posted a medical update in a while, and mostly it's because she's doing pretty well. But, also because it's just hard to write about most days. The reality is, Emily is never "OK". She has a chromosome disorder for which a prognosis can not be given. It will never be cured or fixed. She has wrong information in every chromosome of her entire body. She has epilepsy everyday, even though she has not had seizures on a daily basis since March. Everyday she also has hypoglycemia, hypercalcemia, g tube dependence, cortical visual impairment, kidney reflux, gastric reflux, and constipation issues.
Will some of these conditions get better?
Maybe.
Will she grow out of some of these issues?
Maybe.
Are some of these conditions improving with medications?
Yes.
But any day, any moment, we live in fear that something new and scary could "attack" her and make this stable period we are in right now feel like a distant memory.
As far as right now goes, Emily recently had an EEG, prompted by a few break through spasms 5 days in a row in July. She had one cluster of spasms in May (after being seizure free for 103 days), and one cluster of spasms in June. She has also recently been sleeping more during the day, and having difficulty eating again, so her neuro thought maybe her EEG was getting worse. It turns out that her EEG has changed. She is not in hypsarrhythmia now (for the first time since being on ACTH 12/07-2/08!), but the EEG showed a slowing pattern according to the docs. This could mean that she is developing Lennox Gastaut Syndrome, which means she will probably have some type of seizures for the rest of her life.
The plan was to wean her off of Zonegran, keeping her on Keppra and the keto diet. If the seizures were to start back up again, we would start Lamictal, most likely.
She has been finished with the Zonegran for a week now, and we have seen no seizures, so we are holding off on starting any new meds for now.
In other areas; she is still smiling a lot, laughing some, blowing raspberries some, eating a little bit better, rolling all over the floor, holding her head up pretty well, and sitting fairly well in a supported position.
And as always, she's absolutely adorable!
8 comments:
Some days it is hard to face the cold hard truths. Tom and I were just talking about how sometimes it feels like we are just waiting for the other show to drop. I am glad to hear that the diet is helping Emily and that she is doing so well. I love looking at all of the lovely smiles. She is adorable - as are all of your children.
All the Best.
Marie
SO glad she is doing good!!! I was just thinking about your sweet princess the other day! and I have to say I think my FAV pic on that post is the one where she's making the pirate face. LOVE IT! she just needs an eye patch, a bandana and a parrot and she's all set! Arrrggghh Matey! :) What a sweet little blessing she is!
Think positive and depend on God:)
with Him... All things are possible! He greatly blesses those who are His children. May He bless you and your beautiful family. Praying for all.
She certainly is adorable! Great photos! Thanks so much for sharing them, and her current status.
I have many other mommy-bloggers linked into my top post today (the message of which would apply to you as well). Consider reading the blogs of other mothers who can relate to your experiences with Emily.
Barbara
She's such a cute little girl. What great pictures! Here's to hoping that things only begin to improve just a little bit more each day.
What great photos! I love the smile! Glad to hear she is doing well.
I"m glad Emily is doing well right now. LOVE the cute pics!
Your kids have grown so much since I last checked your blog a few months ago! Happy belated Birthday to the little ones and happy to hear you have had an enjoyable summer.
Kim
(Julia's mom in British Columbia)
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