Guest guest Posted September 29, 2004 Report Share Posted September 29, 2004 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 September 29, 2004 Report Share Posted September 29, 2004 Barb, We have started with a new neuro here in Indianapolis at St Children's Hospital. His name is Castellanos. I'm as skeptical as always and a little mistrusting but we're trying. Dr. Chez does not accept any insurance. You have to pay cash. He does file the EEGs for you with digitrace but thats it. So pretty much, everytime we went it was about 1000-1500 out of pocket with hotel etc. His office staff is great and he is great. I would consider getting an opinion from him just to see what he thinks. I think he did what he could for but he's back to prescribing meds and thats where we started. If this neuro doesn't work-we may go back but we're giving it a break for awhile. We did go to Cleveland Clinic for a 2nd opinion in November of last year and they hospitalized him for 6 days, took him off all meds and no seizures and completely normal EEG. Then, of course, we got home and they came back. Do you think the diet is helping Jake? After 7.5 years man oh man. YOu are a saint in my book. Are you doing keto or Atkins? Has the VNS helped. That is something that has been recommended as a next option. I'm a little skeptical. It seems that with each option,comes a side effect. Thanks for the well wishes about the baby. This will be the third. My 4 year old is so great and he really is like the " big Brother " even though he isn't. We find out the sex on Oct 12. This was a surprise. My OB told me 6 months before I got pregnant that it would be difficult for me to concieve due to lack of hormones, not ovulating etc. Well, he was wrong. We're excited but I'm very nervous too. Lots of luck to you. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2004 Report Share Posted September 29, 2004 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...
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