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!!!
8 comments:
Are you kidding? No thanking me allowed...it was truly my joy to help you out! My only issue was that we only had a measly 10 tabs left!
I'm not sure if you're a part of any of the IS forums...but you could put a shout there as well...someone may have extras for you? I'm way too OCD...I think I'd be half way to Mexico already! ;)
Hope you all have a sweet Father's Day!
...danielle
Hi,
In regards to the Vigabatrin I am srprised that the parmacy didn't have a canadian doc rewrite the script.Thats what the pharmacy we use does. It is in the process of getting approved by the FDA. The manfacturer is hoping that by the end of July it will be for sale in the USA. They are only waiting for the YES to be stamped on the paper. I had to call for Finnians refill they were surprised becasue they thought it was now available in the US. Your little lad is very handsom. Hope the wean goes good I am afraid to take my lad off the vigabatrin we basically have the IS controlled with it I wish I could say that about the other crap load of meds he is on for the other seizures he has.
Hugs form the Bronx
Jack is changing so much, he looks so handsome and sweet~ we miss him so much! Hugs and kisses from cousin Emma :*
As "Bronx" said, we paid $25 to have a Canadian pharmacist approve our prescription. It is only like that in certain providences in Canada.
I have been wondering how Jackson's was doing with the seizures. I can only imagine how that must feel but it sounds like you are getting things under control. Is Jackson on sprinkles or liquid? The reason I ask is because they had Sophie on the liquid because they said it absorbs much faster than the sprinkles. We had a lot of problems getting Sophie's level to a therapeutic range while in the hospital and they kept giving her IV boluses. What dose is Jackson on now?
It is so exciting to read about all his progress. Over 3 feet tall...wow he is tall.
I hope you get everything figured out with the Vig soon.
Jackson is getting so big and he looks great. He's going to be as tall as me soon (I know that's not saying much).
Hang in there. Remember God has brought Jackson so far, and He's not done with him yet. Ya'll are always in our prayers, and hopefully we'll see you all soon.
Courtney
Jackson's Blog said...
"Bronx" - thank you for the information. The particular pharmacy we had previously ordered from, Murray Shore does not allow for us to have another Canadian doctor rewrite it. They want a doctor that has "seen" the patient. Which, if the child has been on the medication previously, you would think they would make exceptions. They just referred me to another pharmacy.
Elaine - Jack is on the liquid form...he too did get several bolsters after surgery. They are very aggressive about getting the meds to or maintaining a good level in Detroit! ;-) Jack's current dose is 4.5 ml in am, 4.5 in afternoon, 5 ml in the pm. We just went up to 5 ml in the evening on Sunday...Post surgery - until May he was only at 2 ml - three times a day...and always a very low level.
Thank you everyone for your support and help! ;-)
What a big boy!
So glad to hear things are going so well!! May the last of these seizures go away fast.. and stay away forever. Our love to all of you guys
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