Friday, May 15, 2009
Autosomal Direct Benign Infantile Siezures???
After 8 days with no siezures, Aiden started having them again last Saturday when we were out of town. He had four that day, four on Sunday, and six on monday. Nearly all were classified as "severe" in that they lasted between 1 and 1 1/2 minutes and affected his whole body. Unfortunately, because we were out of town and it was the weekend, it was difficult to contact the doctors we needed in Salt Lake. On Sunday the Neurologist on call at Primary Children's upped his dose of Keppra. When things were still worse on Monday, we were able to locate an emergency med that we could use on our drive home if Aiden were to go into a siezure and not come out on his own. It took us all day to locate the drug because apparently it is not as commonly used in Las Vegas as in Salt Lake. Thankfully we never had to use it and we got home without any more seizures. We already had a follow-up appointment scheduled with Neurology from his previous hospital admit and when we were in the waiting room he went into yet another seizure, making it three for Tuesday. I'm sure it freaked a few people out in the waiting room because several of the staff came to our aid all at once. The doctor was able to see this seizure. He admitted Aiden to the hospital again to run more tests and try new meds. He had another siezure in his hospital room just before he was hooked up to IV meds...totaling 18 siezures in 4 days. After 3 days and 2 nights with his MRI and EEG results being normal, we are finally home again and on new medication. So far, so good. The current diagnosis "seizure disorder" is very vague in my opinion, but I understand that seizures themselves are not well understood medically. (keep reading if you are not bored already) The neurologist believes that it is Autosomal Direct, meaning directly inherited from his father and his father's father, etc. Benign...that's always a good word, Infantile, meaning he will hopefully outgrow this condition after infancy, Siezures. He is doing okay right now, other than he is on an emotional rollercoaster...hopefully a result of the sedative drugs he was given before the MRI on Wednesday and not the new medication he is on. The poor little guy was also fitted for his helmet today which he will get on the 29th of May to hopefully fix the flat spot on the left side of his head. This has nothing to do with the siezures, just his stubbornness about always sleeping on the same side of his head.
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9 comments:
I'm so sorry you guys are having to deal with this! How scary - I'm glad things have been ok so far and that it's hopefully something he's going to grow out of. Jozie and I are pretty good babysitters and would love to help if you ever need it while you're at the hospital or something. Take care :)
I'm so sorry for you guys and for little Aiden. How are the other kids handling it? How are you guys doing? Anyting we can do for you...emoltionally or physically? You're in our prayers.
That's enough to bring tears, we will be praying for you guys and your sweet little Aiden. It's so sad when these tiny people have to go through hard things.
Thanks for your comment on my blog!
It was really great to be able to read yours. We'll keep Aiden our prayers. Hope you keep hanging in there too. It's hard as moms to see our children suffer!
Wow what a rough ordeal you are going through! We will also keep Aiden in our prayers.
Love you.
Carianne
I'm so sorry Rayz that you guys have had to go through this. I'm sure it's been so scary and so frustrating, but I'm glad they have something for him. I hope it works and that he'll grow out of it quickly. Our thoughts and prayers are with you guys and sending a big hug! Love and miss you lots!
Que Dieu vous benisse. Take care La famille Sandstrom. We're sure Aiden will be his usual self in no time.
How are things working out? Do you still use this blog??? :)
We sure miss you guys. How are you doing? Do you ever get to Vegas these days? It would be good to see you all again. We just had a little girl and named her Kylee.
Lynette Peterson
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