Jackson is doing better! Still not seizure free, but I think we are FINALLY getting somewhere. (I'm looking at things optimistically!!) Last I posted...he was having a couple a day...sometimes none. Well, they did get worse to where I would see at most 8 individual seizures a day. I could have missed a few, because they begin and end in the blink of an eye...but I am around him ALL the time. Now they are back to improving! Yeah!
Our neuro had Jack's medication levels checked every other week. Our doctors goal is to get the Depakote level to 50 - 100. We were at 20...then two weeks later it only increased to 30...and last week it was at 41. The Depakote level is taking forever to increase, because the other meds are breaking it down, BUT now we are finally seeing results. I am only seeing again 0-2 seizures a day...and we still have to get to 50 - 100 for therapeutic level of Depakote. I think it is a good sign. I was a little (well very) worried for awhile, because we were not seeing improvement. However, this past week has been consistently better. I hope in the next couple of weeks we have NONE again! Anyway you look at it...we so DETEST any type of seizure...infantile spasms or not.
We are experiencing a HUGE issue with Jack's Vigabatrin medication that we get from a Canadian pharmacy. This particular drug is not approved in the US. Well, I had ordered a 3 month supply in February. I went to reorder this month, and when I called the pharmacy, I was informed that they can no longer supply me Vigabatrin, because my prescribing doctor is an American doctor, not Canadian. I asked, "When did this change?" The pharmacist said, "2 months ago." She told me to call another pharmacy in Canada, in a different province that could send me the medication. However, Jackson at the time of this call was 5 days from being out of his medication completely. Normally, this pharmacy would only take 2 days to ship...because they would send it via Fed Ex. So, I ended up calling 8 new Canadian pharmacies...they all gave me the same answer, "We can ship to you, but it will take 8 - 21 days." I was freaking out! They only ship regular postal mail!!! No one could do Fed Ex or a rush. So I ordered...they did not even ship out his medication for another 2 1/2 days. It was a nightmare. However, Tera, Reagan's mom, gave me some "expired" Vigabatrin that she had and my doctor approved us taking it. In fact, I think it was once Sophie's, that Elaine had given her. ;-) Then I realized I would quickly run out of that...and Danielle, Trevor's mom, kindly sent me 10 tabs priority mail that they had left over. Thank you so much Tera and Danielle!
However, we still have no clue when this medication will actually show up and I do not have enough still if it was to take another 3 days. So, after speaking with Jack's neuro on Friday about the predictiment...he now wants to wean this drug. It is a rather fast wean...so I HOPE that Jackson has no increase in seizures and no side effects. This is what we have wanted...one less drug, but it is kind of scary at the same time. Our doctors do not think it will hurt Jackson, and that this particular drug is not necessary for him anymore. With this super fast wean, if medication does not show up, he will be off by Monday!!! I am a little nervous...
Besides all the medication drama, Jack's having a lot of fun this Summer. He loves swimming. We swim everyday...sometimes twice a day. He is taking lessons on Tuesday morning every week, but we are still on the wait list until September for the aquatic therapy program at TX Children's.
Some new things....Jack is starting to walk more now with assistance. He is cruising the furniture, windows, and doors...anything he can pull up on. He loves trying to stand up from the floor...and pushes off with his hands. It is quite scary as he is learning this maneuver while he is over 3 feet tall. Most babies learn this and they are much smaller. However, he really is good about protecting himself, but I still get nervous. He is also so much more alert and really pays attention when we are speaking to him. His concentration level is much improved, he is into books finally, and he is starting to play with his toys in a more advanced fashion. He is really observing them and trying to figure out how some of the toys work. He is still our "wild" little man, but more organized! We're so proud of him!!!
