Ever since my last post, things around here have been so hectic. After our decision to take Jordyn off of the Ketogenic Diet, we also had to make a hard decision to take her off of the "Canadian Medicine" Vigabatrin, also. Vigabatrin had been doing "OK" with her seizure control as long as it was paired up with Phenobarb and Zonegran, too. But, we were going to have to increase it which meant we were going to have to buy a whole lot more of it, more frequently. It's a very expensive drug that's not FDA approved and we wanted to substitute it with an insurance-covered, FDA-approved medicine that we wouldn't have to worry about so much. The HUGE problem, though, ended up being that we weaned her off of the Vigabatrin too quickly and she had a horrible reaction to it. Our funds were tapped from the Diet, and from missing work due to the last hospital visit, and FedEx is breathing down my neck, so we just couldn't swing another shipment of Vigabatrin.
We would have not paid a few other bills and called Canada for one more box had we known the extent of Jordyn's withdrawal seizures from the rapid wean we did:
On Monday, October 16th, John called me at work and told me to get home because Jordyn was having very strange, continuous seizures where her mouth and hands were twitching and she had excessive drooling. I raced home and called an ambulance. No seizure has ever been this scary. Usually, we'd give her a rectal medicine that stopped seizures quick, but it hadn't worked. The team came and we flew to the Children's Hospital where they tried 3 times to get this seizure spell stopped. After an hour, Jordyn finally fell asleep and her little hands stopped twitching. They kept her in the ICU for a night to monitor her close since she's never had a seizure this long. She was doing better, so the next couple of nights we were in a regular room. Both the doctor and John said it wasn't our fault that she was doing so badly, and that she could've had these bad seizures for any reason, but I still feel horrible.
We started her on a drug called Lamictal to be paired up with the Phenobarb and Zonegran so hopefully it will kick in and help. Lamictal cannot be given to her in large amounts yet, or she'll have a bad skin rash reaction, so we'll have to slowly increase it week by week until it's at it's full potential.
We hate these stupid drugs!! She's been having some subtle spasms where her right arm will raise up and her neck will tighten. I gave her some meds that the hospital uses, but they just won't go away until I give her a large enough amount to make her so drowsy that she'll fall asleep.
I have been trying to get things in order for her Brain Surgery Evaluation in Dallas. They will keep her for a few nights and run all sorts of tests to see if she's eligible for the surgery.(Called a Temporal Lobectomy) If their tests show that the seizures are started only on the left side of her brain, then she'll be a good candidate. If not, then back to the drawing board.
Aside from having to deal with different Dallas Hospital people on the phone, trying to schedule this evaluation, (The doctor is doing the evaluation even though they don't take Jordyn's insurance, and every one I've talked to keeps trying to blow me off because they don't know about her case) we are also trying to figure out how we are going to be able to afford this trip with our part-time schedules. Missing work, gas to and from, food... that's about $400 that is not in our beloved little budget.
I'm trying not to worry about it so much, but I may have to host a very chilly "Aicardi Car Wash" (any helpers? lol) or something soon and try to raise the funds.
I just hope that Jordyn is a good candidate so we can stop the meds and start working full force on her development and just Jordyn herself. She is such a happy kid when she's not "drugged" up. We may start the Ketogenic Diet again, but I want to make sure that we get the right info on what to do the second time around.
So, right now we are trying to organize this Dallas trip while also seeing how this new Lamictal drug is going to work with her other two meds. I'm sorry I didn't make this long story short, but I've been just so full of emotion. It feels so good to "get it all out" and share this with you, my family and friends. Thank you everyone for reading her updates and being such wonderful people! We love you all.
Kristen,
John, and Jordyn
No comments:
Post a Comment