Special Needs


How is Avya doing?  I hope she is well.  Are the injections working?  I really hope so, you guys deserve a break from the IS.  How is she doing developmentally?  Was she able to relearn any of her skills while still having the IS?

Lincoln is starting to have some cluster seizures again, and although they look different than before, I am afraid that they are the IS returning.  We may end up doing the ACTH injections also, if we cant get them back under control by increasing the Vigabatrin.

Anyway, I just wanted to let you know that I have been thinking of you guys, and hoping for the very best.  Hugs!

imageimageimageimageimage 9/07 m/c baby boy @ 18wks, 4/09 m/c @ 4.5wks

Re: **SaucySarie**

  • So far no luck.   She is still having multiple clusters a day.  :(   She is VERY behind developmentally and she hasn't been able to relearn anything Crying   I think that b/c we are doing a lower dose of ACTH than most (our neuro said their would be less side effects) that it might take a little longer to get full control.

     I'm sorry Lincoln is having clusters again.  That really stinks.  Hopefully the Vig. will help.   Thanks for thinking of us....we will keep you and your family in our thoughts.  Hugs to you.

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  • Oh.  I am sorry hon.  I really hope that this will kick in soon, and she will get better.  Good luck.
    imageimageimageimageimage 9/07 m/c baby boy @ 18wks, 4/09 m/c @ 4.5wks
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