Hello Everyone My daughter Libby is 4 and will be 5 in june. She has been on prednisone since nov 08 and lost all her speech in oct 08. We just went and seen...
We tried both the prednisone orally and the IVIG treatment. We had the IVIG x2 infusions. Our daughter responded at first to the prednisone, but after 9 months...
we are doing both. just in from a long session today. you are so lucky to have started the prednisone a month after she regressed. we did oral for a little...
Steph- Thanks for the reply. Did your son stop the steriods before he started the IVIG? Her neuro wants to keep her on the same dose of steriods while she does...
Hi Everyone, I wanted to post an update since we have come back from Florida. We went to ICDRC for 1 month of habit and IV steroids (we did 3 days on 4 days...
Hi Stacey, Has he had an overnight EEG? 12 days on oral steroids is not very long at all to see any positive effects. Of course, some kids improve in days,...
Hi Sam, Thanks for your reply. No he has not had a 24 hour EEG. Ny Neuro says we need to see clinical results and the EEG does not matter as much. I don't...
But the point is, its unlikely that any clinical improvements will be seen unless the EEG is clear. The brain needs time to repair and heal, and this can take...
Stacey, What medication did you use for the protocol... Solumedrol (methylprednisolone) or ACTH? Or something different? That particular protocol is the same...
Now we have a clear EEG. Our daughter is making progress, but she just can't seem to focus. She has all the traits of ADD-impulsive type. Has anyone tried meds...
Nikki, My son Thomas has ADD traits (not impulsive). Thomas tends to have sweet disposition just poor attn span and focusing, diffculty following auditory...
Hi Sharon, We used the Solumdrol. I actually posted the protocol under the "files" section of this site. It is the same one you are interested in. The only...
Hi friends, Things have been out of control busy at our house...2 surgeries (me, and I'm fine), IEP madness (not so fine but still in process), work (insanely...
Hello! My name is Hildy & I have a 4.5 yr old daughter who may have the dx of LKS. My gut tells me this dx is correct.....after two years of numerous dx this...
Suzanne, Glad to hear from you. Hope you are recovering well from your surgeries. Sorry to hear about your job...these are tough times for folks.Happy to hear...
Hildy, My suggestion to you is to find a good pediatric neurologist that specializes in seizures disorders at your closest large, university medical center....
Hi Sharon, I sure hope that your doctors get on the stick and start acting like they can do something! It is not fair to your poor son to not get the treatment...
Speaking of REM sleep, I attended a medical conference on autism in April and there were several presentations on sleep abnormalities and seizures, and the...
Hi Sharon,  Thank you for responding. We did find a neurologist (I think she is pretty good) she met with my daughter for the first time about 3wks ago. ...
Boy, that would be great to know. We do want to stop seizures, but not at the expense of REM. Goal 1 is to normalize the EEG, goal 2 is to restore REM. Suzanne...
Suzanne, I looked it up and Valium can cause shorter lengths of REM sleep BUT, and a big BUT (for me), uncontrolled seizures/spikes during night time causes...
Hey there, I've been a year long subscriber to the group but have never posted. I guess today is the right time. Our 7 year old son was DX a year ago with LKS....
Suzanne, I am certain you have anxiety over unemployment, hopefully, it will be short lived and afford you the time to invest in helping your son. Look at the...
Hildy, The research article posted on this site under "files" by Stepanotos is a wonderful resource also regarding treatment options and testing. It gives the...
KIm, Thanks for sharing. My son is also on Keppra but EEG still abnormal. Still fighting for diagnosis and steroids. Still running the marathon.How often are...
I forgot to mention it took a while to up dose the Keppra enough to take care of the EEG spikes. I suppose its' always going to be like that since he'll be...
Does anyone have a child with LKS and a Mitochondrial disorder? Has anyone had a spinal tap or lumbar puncture? IF so was it normal? Have you had genetics...
Kim, Thanks for reply. My son is on Keppra XR 500 mg twice a day which is what he has been on since last November. We tried to wean after 2nd EEG still showed...
Holly, NO to spinal tap, lumbar pucture, mitochondrial disorder. Yes, to genetic testing...had Fragile X testing and High resolution chromosomal testing and...
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