As I mentioned in the last post we have seen a what looked like a new seizure in the past month. She doesn't have one every day, the pattern is every 5-7 days. We talked to our neurologists and they both think she is having partial tonic seizures along with the infantile spasms. It is considered partial because one one side of her brain is causing the activity and tonic because she freezes up when she has one.
Here is a link to learn more about tonic seizures:
If you remember, back in November when Piper had multiple EEG tests done we learned that the right side of her brain is responsible for the seizure activity. At that time the left side was not affected (probably because she is missing the corpus callosum that connects the two hemispheres) and looked relatively normal for someone with ACC. We are not sure if that is still the case but think its possible since she is having partial tonic seizures. The only way to know more is to have another EEG done and hope that she has a new seizure during the procedure. Since she is having them randomly, the chances of that happening are pretty slim. The doctor cannot make any logical changes in medicine until he knows exactly what is going on. This pushes our phenobarbital wean back to who knows when which is frustrating since this is medication that makes her smiles go away. We sure do miss those smiles but just have to be patient one again. We have a 6 hour EEG scheduled for Monday so hopefully she will have one while we are there. The doctor also did not think we saw a change when we put her on Zonegran so we are taking her off it now. We will know more at our appointment in August after the EEG is done. This sounds terrible but please pray she has a seizure while we have the procedure done!
We met with a physiatrist last week who will be working with Piper. She is a rehab doctor that works with bone, muscle and nerve issues and how it affects mobility. She has ordered Piper some pieces of adaptive equipment to help her mobility. Since the stroller doesn't support her well we will be getting a supportive chair/stroller and a stander for when she gets stronger. What is a stander? Justin says its the thing that they wheel Hannibal Lecter in on in Silence of the Lambs (and yes he said this to the doctor)
Hope we don't offend anyone but we find humor in every situation and it sure does make things easier. It does look pretty similiar, it basically supports her in standing position and helps her muscles learn how to work while standing. The stander will require her to wear braces on her feet so help her stand correctly. We are going to get fitted for braces in two weeks. We will also be building a room in our next house for her equipment!!! Along with these things, she has also outgrown her car seat and will need a new one soon. We have searched everywhere for one that she can use and finally found one for "special needs" and it looks like it will work well. Since it can be ordered along with the other stuff we may be able to get insurance to pay for it, if not it's $700!!! Ridiculous!!!!
She is now almost off of the ketogenic diet. We spoke with the dietician today and Piper can go back to regular formula starting tomorrow! Her solid food will still be the 2:1 ratio but will go to regular food next Monday if we don't see any problems. We are very excited about giving her regular food!! We will also begin speech therapy now that she is off the diet. At this age they help with feeding and strengthening her muscles to help her eat correctly. She had a swallowing test done back in November as well and she aspirates when she eats (she breathes in liquids) so we have to thicken her food. We are not sure if she is still doing this so we will be doing another test to see if her muscles have gotten stronger or weaker. We pray she has gotten stronger so that she will be able to eat normal food. The things we will be able to feed her will depend on the results of this study.
We will be traveling to St. Louis for 5 days this week to attend the Aicardi Conference. We are excited and a little nervous to meet other families and learn more about the syndrome. Justin is already traveling and will meet us there. He rented us a mini-van to drive because we there is no way we can fit everything in a car. No offense to all you mini-van driving moms but the thought of it makes me cringe! I vowed never to drive one....Justin said he is going to fly a white flag on the back. Hahaha. I told him chances are I will love having more room and want one when we come back. We will see!!
That is all for now...thanks for keeping updated with all the craziness!