Guest guest Posted October 1, 2004 Report Share Posted October 1, 2004 Hello Barb....I just caught this email by the " drops " in your subject line. I always read those when I can since my daughter who has just turned 6 has the head drops and also the body drops. I noticed in the email that you go to Dr. Chez. I was out of Lake Forest hosp and I was recommended him. I only went there for a few months. I wasn't happy with their routine either. Dr. Chez seems to be a very smart man, but he never saw us. We went to another Dr. there because Dr. Chez was, at that time, more involved with autism children. I was there when he was being interviewed by Channel 5 as inventing the pill that helps young children come out of their shell from the autism. It was incredible to watch this little boy of his (patient). Very cool. I don't know much about autism, but he was also on another special. I live in North Barrington and I met a lady who recommended Dr. Nordli. He's the Director of the Epilepsy Ward at Childrens Mem. in Chicago. He and his staff are wonderful!! I can't say enough about them. They even have a staff that comes to the school, daycare, etc. that helps explain the diet or the seizure disorder to the staff. It's unbelievable! They also take insurance....oh ya, they actually take your calls and if they don't answer, they call you back asap that day. I never got a call back from Dr. Chez's office right away when this was the beginning of trying to understand what was happening with my daughter. The breaker was no call in 2 WEEKS! I never went back again. The nurses were very nice, I have to say. But the staff we have now is so personally involved with Sheridan and our family that there's so much more of a secure feeling. I need that....I also needed even more 2 years ago when she was diagnosed. I just wanted to share with you anything I could help with. Please let me know if you would like his information. I've been on the diet for only almost 4 months and it's extremely difficult for us. Keppra was not a good drug for Sheridan, so we stopped immediately. It does affect the behaviral and I surely didn't need any more of that. She now is off of the Depekote and only on Topomax, which I don't this does much of anything either, but you never know until you stop. Take care...., Sheridan's Mom At 06:18 PM 9/29/2004, you wrote: >Yes, he has a helmet. He wears it most of the day at school, not as much at >home but I shadow him all the time. The drops are awful, I think the >hardest seizure type he has. I'm sorry that 's are back. So >frustrating - I agree.. Keppra has helped the drops to an extent, actually >when I took the Keppra away because of behavior, the drops were worse than >ever so we put it back. They are fewer now. > >I'm with you on the diet too, we are 7.5 years on it...too long. Jake >doesn't really know or understand any normal way of eating. Hoping to get >him off one of these days. > >And Jake...well, he's as confusing as ever. Neurotransmitter levels are >deficient. Amino acid levels are high and low. Suspected mito disease but >we can't confirm - unless I do a fresh muscle biopsy on site in either >Cleveland or Atlanta. Testing him (another skin biopsy) for something >called 3-Methylglutaconic Aciduria Type IV. Very rare. Also contemplating >a corpus callosotomy....it's up for discussion. Just changed the VNS >settings, a little stronger current on rapid cycling and so far it's >basically just gagging him, plan is to give Clobazam a quick try. Never a >dull moment. > >If not Chez, who is following Christoher now? I always thought about >getting a consult w/ Chez but never did. Does he not take your insurance? >My in-laws are in Lake Bluff so it would be relatively easy for me. > >On a happier note, I'm thrilled for you about the baby on the way. You're >not nuts, you're blessed and lucky. Oh yes, and BUSY. When is the big due >date? We always thought about a third but somehow it never happened, and I >think I'm done.... but never say never. > >Barb > > Re: Barb, drops > > > > Barb, > > Does Jake wear a helmet? Those must be so hard. Dr. Chez called > > s drops myoclonics. We had them controlled about 98% for 2.5 >years and then > > ran into these problems with the stoamch/gut/constipation thing and now >they > > are back. Is Jake still on the diet? Have any drups ever helped the >drops. > > > > > > We are no longer seeing Dr Chez due to financial constraints and driving > > distance. Its just toom uch anymore and frankly, I feel like I am playing > > doctor and I take it so personally when he starts seizing like its my >fault. This > > is so frustrating. > > > > I am really really sick of the diet. We are doing Atkins now and >although > > there is no scale, it is more restrictive than keto as far as his food > > choices. On keto, he got fruit. Now he doesn't. > > > > Tell me whats going on with Jake. I remember that you were the first >person > > I talked to 3 years ago when we joiined this list. > > > > > > mom to , 6, 4 and baby on the way (yes I'm nuts) > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 2004 Report Share Posted December 17, 2004 It is weird to wake up to, believe me! She sleeps with me, and it was freaky! . Barbara Swoyer bswoyer@...> wrote: Those laughing seizures are weird. We only see them about once/twice a year. Funny at first, then freaky. Nope, my Jake is actually a " " but we call him Jake. I have never scanned him into the pix. Mostly because I have no idea how Barb Swoyer Re: to Barb > > > > Dear Barbara > > Did you keep the same ratio and just skew it towards the protein instead of > the carbs? , 's mum > > Barbara Swoyer bswoyer@...> wrote: > re: lack of height, my son did not grow in height for the first two years on > the diet, (he was 17 mos old when we started). It wasn't until we raised > protein that we saw growth in height. > Barb Swoyer, Jake's mom > > > > " The Ketogenic Diet....a realistic treatment option, NOT just a last resort! " > > List is for parent to parent support only. > It is important to get medical advice from a professional keto team! > Subscribe: ketogenic-subscribe > Unsubscribe: ketogenic-unsubscribe > > > > > Quote Link to comment Share on other sites More sharing options...
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