When Charlie Claire first started Lamictal in July I had a gut feeling that it wasn't going to work. We knew that if the Lamictal didn't work that C would have another surgery. What we didn't realize is that after the surgery C could still be having seizures and the Lamitcal could still not work and now here we are on to a new medication...Zonegran This is the Charlie Claire's 11th seizure medication.
Since we have not seen any significant difference since lowering Charlie Claire's dose of Lamictal the neuro does not think it is doing anything to help her at this point. So, we are holding steady on the Lamictal dose, adding the Zonegran and calling them in two weeks. If the Zonegran appears to be helping we will drop the Lamictal. So, C is back up to 4 medications at the moment.
I am having a little bit of anxiety about this medication change as this is the first time we are introducing a new medication now that Charlie Claire is on a legitimate schedule. All anti-seizure meds cause drowsiness and it can be particularly bad the first 4-6 days after starting it until the body adjusts. As selfish as it sounds, it has taken us 15 months to get Jackson and Charlie Claire to nap at the same time and now we may be back at square one. Hopefully C takes to the new medication well and it stops her seizures :)
Charlie Claire also had an eye dr appointment today. I was nervous about the appointment because a) she hasn't been wearing her glasses and b) she hasn't been wearing her eye patch. I thought for sure I was going to get lectured. Thankfully the Dr. was super nice and understanding. He wants to recheck C's eyes to see if she needs new glasses. It is possible that since July the prescription has changed and if that is the case they wouldn't be helping her and that could be why she doesn't like wearing them. AS far as the patch, since her right eye only drifts occasionally there is no immediate cause for concern but we don't want it to get worse. So instead of C needing to wear her patch 2 hours a day he said he could shoot for 30min - an hour. If anyone has any pointers here please feel free to share...! We will be going back in March for a full eye exam and this time she is going to have company...Jackson is having an eye exam also!
Lastly, a couple days ago we posted about Mackenzie and her liver transplant. Tomorrow is Mackenzie's 3 year transplanniversary. Please keep Mackenzie and her family in your thoughts and prayers as they celebrate sweet M's life and where they were 3 years ago. Also, please keep the donor's family in your thoughts and prayers...it is because of them losing their 3 year old that M was able to get a healthy, new liver.
My son also has an uncontrollable seizure disorder. Interesting about the eyes...so when he was born, he had a droopy eye lid on one side... it slowly got better, but not before the eye went lazy. So we patched for about a year and a half...when he was 3 years old...we decided to do HBOT for another problem...and low and behold, halfway through, the lazy eye was completely gone. It stayed away for 2 years...it wasn't until he started having a new type of seizure that things came back a bit. It isn't all the time...and it isn't technically a lazy eye anymore...sometimes his eye will move in or out (for seconds) during a seizure...when the seizure is over, the eye will go back to a normal position. It really is kinda freaky to watch...but in any case, my point is that we had a very unexpected and great result with his eyes from the HBOT.
ReplyDeleteWe also used these patches that fit right on to his glasses (so we didn't have to deal with the sticky patches)...
http://www.ortopadusa.com/Patch-Pals-8482-Patches-for-Glasses
also after the HBOT he had normal vision, and we got to throw away his glasses...he still 3 years later has 20/20 vision. The doctor said she has had other patients with similar experiences to HBOT.
We trained him to keep his glasses and patch on using an ABA technique. We put his favorite show on the TV...everytime he took the glasses or patch off...we turned the TV off...It literally only took about 45 minutes of this, before he understood and kept the glasses patch on each day. Of course when he got mad at something, he would throw them off...but in general, he kept them on.
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