Guest guest Posted October 18, 2008 Report Share Posted October 18, 2008 Hi I was hoping someone would have some advice. My three year old daughter has what we call " spells " . Not quite a seizure but a few moments that she will stiffen up and zone out for a few seconds, sometimes falling. This happens most often after waking. We had her on kepra and the spells became worse not to mention the other horrible side effects. She has other dosorders as a result of menengetis herpes encephalitis she was sick from last year. Anybody that might have suggestions would be grreatly appreciated. Thank You Stacey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2008 Report Share Posted October 21, 2008 Good connection! HPA dysregulation, orthostatic intolerance ... those are a couple of things to google to see if they sound like they could be connected. The stiffening, though... that leads me back to possible seizures, BUT I'll look further into those pathologies that trigger the syncope-like episodes. You can also have the same over-dilation in the very large vein in your abdomen (name?) - I find that when I'm having my 'episodes', clenching my stomach muscles very tightly (pulling into the spine) will give almost immediate relief. I'm not sure how you would suggest that to a 3yr old, other than laying together and playing 'tummy games' to teach her how to suck it in... BTW to Stacey - if you're new to , you might not be aware of the similarity of autism to Chronic Fatigue Syndrome...? And that there are several other neuro-immune problems that all sortof fall into the same or similar pathology. And CFIDS is very often triggered by significant viral infections (especially Herpes viruses like HSV1 & HSV2, HHV6, EBV and CMV)... did you know which virus was involved w/the encephalitis? I had mono encephalitis when I was 12 - a year after my first mono episode which did trigger CFIDS then, and I had a LOT of neurological problems from then on, from toe-walking, loss of eye contact and socialization, sensory problems, major cognitive problems, and so on and so on. If these are related to the orthostatic intolerance that Angie suggested, one of the best things that has helped my youngest son was the trampoline. But before you go there, there is testing (tilt tables and such), as well as monitoring blood pressure at rest and then after standing, that could help evaluate whether or not this may be going on - although false negatives could be there too. Still, absence seizures are a common in too (and not often found on EEGs), but adults w/CFIDS have spells where we tend to not always be responsive due to problems with auditory processing and overall brain mud ... my DH used to think I was ignoring him, whereas I'd hear him and just not be able to respond at first... (I just didn't stiffen...) I assume your child has been worked up by a neurologist for these, but have you recorded several episodes for them to view? We had a child at my work that was having seizures that couldn't be identified until they took video of them. HTH- seizures groups (DOT) com Date: Saturday, October 18, 2008, 4:05 PM Hi I was hoping someone would have some advice. My three year old daughter has what we call " spells " . Not quite a seizure but a few moments that she will stiffen up and zone out for a few seconds, sometimes falling. This happens most often after waking. We had her on kepra and the spells became worse not to mention the other horrible side effects. She has other dosorders as a result of menengetis herpes encephalitis she was sick from last year. Anybody that might have suggestions would be grreatly appreciated. Thank You Stacey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2008 Report Share Posted October 21, 2008 http://www.iahp.org/Seizures-Epileptic.85.0.html Love, Gabby. :0) http://stemcellforautism.blogspot.com/ " I know of nobody who is purely Autistic or purely neurotypical. Even God had some Autistic moments, which is why the planets all spin. " ~ Jerry Newport Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2008 Report Share Posted November 19, 2008 If you do get a trampoline, I have been told from someone that does our HANDLE sensory exercises, that you have to be careful what kind of trampoline you get for an asd kid. A regular cheap one does not have the right amount of re-coil and springs and can make some vestibluar issues worse for these kids, or just feed the sensory issues from the wrong way. I know one of the good ones that works for the child is called REBOUND. It does cost about $200 or so, but I think also comes with a lifetime warrenty. Angie From: Granny <granny.lucy@ sbcglobal. net> Subject: seizures groups (DOT) com Date: Saturday, October 18, 2008, 4:05 PM Hi I was hoping someone would have some advice. My three year old daughter has what we call " spells " . Not quite a seizure but a few moments that she will stiffen up and zone out for a few seconds, sometimes falling. This happens most often after waking. We had her on kepra and the spells became worse not to mention the other horrible side effects. She has other dosorders as a result of menengetis herpes encephalitis she was sick from last year. Anybody that might have suggestions would be grreatly appreciated. Thank You Stacey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2008 Report Share Posted November 30, 2008 Hi Stacey - I'm sorry I never got back to you on your question. You cannot likely get antivirals locally - you would have to see a doctor experienced in using them. Most local doctors would not. I had a kid with well documented progress on antivirals, yet educated with and loaded with research, no doctor was willing to precribe them. A lot of DAN! doctors are starting to use them now, too, but they are really under-dosing and using them for too short of a period. You could see Dr Bruce in Port Aransas TX (also continues his clinic in upstate NY) or see Dr Goldberg in Tarzana CA (outside LA). It has been worth it to me to travel and do phone consults. Ultimately many people find seeing them is cheaper in the long run than doing DAN, too, because meds and labs are covered by insurance. Phone consults are not. (I see Dr now because he can treat adults too, and because he spreads out consults longer and is therefore cheaper, and my kids are 'easy' and just need the basic protocol. I trust him pretty much as much as Dr Goldberg, although if I had a kid with complex immune issues and really serious seizures, I would go to Goldberg.) HTH- ________________________________ From: Lucy Hardage <granny.lucy@...> Sent: Monday, November 10, 2008 5:25:33 PM Subject: Re: seizures Hi , Can you tell me where to get the antivirals for my daughter. I talked to her new doctor about them and he didn't seem to know anything. On the other hand, the more I research it, my husband and I can't believe we were never told of the possible benefit. If you could give me some tips on how to buy them that would be great. Stacey seizures Hi I was hoping someone would have some advice. My three year old daughter has what we call " spells " . Not quite a seizure but a few moments that she will stiffen up and zone out for a few seconds, sometimes falling. This happens most often after waking. We had her on kepra and the spells became worse not to mention the other horrible side effects. She has other dosorders as a result of menengetis herpes encephalitis she was sick from last year. Anybody that might have suggestions would be grreatly appreciated. Thank You Stacey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2008 Report Share Posted November 30, 2008 To illustrate 's point regarding under dosing of antivirals, my regular doc (whom I love) prescribed 125mg of Famvir per day for my EBV for three months. Dr. G treats me for both HHV 6 and EBV and I now take 1,500 mg per day of Famvir. Good luck. Robyn > From: <thecolemans4@...> > Subject: Re: seizures > > Date: Sunday, November 30, 2008, 10:57 AM > Hi Stacey - > I'm sorry I never got back to you on your question. > You cannot likely get antivirals locally - you would have > to see a doctor experienced in using them. Most local > doctors would not. I had a kid with well documented > progress on antivirals, yet educated with and loaded > with research, no doctor was willing to precribe them. A > lot of DAN! doctors are starting to use them now, too, but > they are really under-dosing and using them for too short of > a period. You could see Dr Bruce in Port Aransas > TX (also continues his clinic in upstate NY) or see Dr > Goldberg in Tarzana CA (outside LA). > It has been worth it to me to travel and do phone > consults. Ultimately many people find seeing them is > cheaper in the long run than doing DAN, too, because meds > and labs are covered by insurance. Phone consults are > not. (I see Dr now because he can treat adults > too, and because he spreads out consults longer and is > therefore cheaper, and my kids are 'easy' and just > need the basic protocol. I trust him pretty much as much > as Dr Goldberg, although if I had a kid with complex immune > issues and really serious seizures, I would go to Goldberg.) > HTH- > > > > > > ________________________________ > From: Lucy Hardage <granny.lucy@...> > > Sent: Monday, November 10, 2008 5:25:33 PM > Subject: Re: seizures > > > Hi , > > Can you tell me where to get the antivirals for my > daughter. I talked to her new doctor about them and he > didn't seem to know anything. On the other hand, the > more I research it, my husband and I can't believe we > were never told of the possible benefit. If you could give > me some tips on how to buy them that would be great. > > Stacey > > seizures > > Hi > > I was hoping someone would have some advice. My three year > old daughter has what we call " spells " . Not quite > a seizure but a few moments that she will stiffen up and > zone out for a few seconds, sometimes falling. This happens > most often after waking. We had her on kepra and the spells > became worse not to mention the other horrible side effects. > She has other dosorders as a result of menengetis herpes > encephalitis she was sick from last year. Anybody that might > have suggestions would be grreatly appreciated. > > Thank You > > Stacey > > Quote Link to comment Share on other sites More sharing options...
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