Guest guest Posted July 16, 2001 Report Share Posted July 16, 2001 Thanks, I called my neurologist this morning and gave him the information. Dianna Bob and Pam Dowen wrote: This came from one of the parents on the Autism-Mercury list: "Depakote has actually been responsible for over 300 deaths in children due to pancreatic failure not liver failure. Notices of this went to psychiatrists and not to the neurologists. My son's psychiatrist is now trying to get this medication banned. I suggest you check pancreatic status not just liver status....Sincerely Joni M. RN" Dr Tricarico...1- (He sounds strange on his answering machine but is not like that in real person ). He is trying to get this drug banned and he is the Source...Joni "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...
Guest guest Posted July 16, 2001 Report Share Posted July 16, 2001 My daughter got pancreatitis from Depakote. It took the hospital 2 days to diagnose it and then they continued to give her IV depakene. All this while I kept asking "Could the depakene be causing this?" Finally I got a gastroenterologist to verify the causal relationship and then asked the neurologist to stop the depakene. She did, but insisted that she did not believe the depakene caused it. By that time my daughter was in ICU. It was a nightmare. Doctors are uninformed. I warn all parents whose children take AED's about this. Thanks for posting the warning. Sandy, 's mom Depakote This came from one of the parents on the Autism-Mercury list: "Depakote has actually been responsible for over 300 deaths in children due to pancreatic failure not liver failure. Notices of this went to psychiatrists and not to the neurologists. My son's psychiatrist is now trying to get this medication banned. I suggest you check pancreatic status not just liver status....Sincerely Joni M. RN" Dr Tricarico...1- (He sounds strange on his answering machine but is not like that in real person ). He is trying to get this drug banned and he is the Source...Joni "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...
Guest guest Posted July 16, 2001 Report Share Posted July 16, 2001 My daughter got pancreatitis from Depakote. It took the hospital 2 days to diagnose it and then they continued to give her IV depakene. All this while I kept asking "Could the depakene be causing this?" Finally I got a gastroenterologist to verify the causal relationship and then asked the neurologist to stop the depakene. She did, but insisted that she did not believe the depakene caused it. By that time my daughter was in ICU. It was a nightmare. Doctors are uninformed. I warn all parents whose children take AED's about this. Thanks for posting the warning. Sandy, 's mom Depakote This came from one of the parents on the Autism-Mercury list: "Depakote has actually been responsible for over 300 deaths in children due to pancreatic failure not liver failure. Notices of this went to psychiatrists and not to the neurologists. My son's psychiatrist is now trying to get this medication banned. I suggest you check pancreatic status not just liver status....Sincerely Joni M. RN" Dr Tricarico...1- (He sounds strange on his answering machine but is not like that in real person ). He is trying to get this drug banned and he is the Source...Joni "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...
Guest guest Posted July 16, 2001 Report Share Posted July 16, 2001 > " Depakote has actually been responsible for over 300 deaths in > children due to pancreatic failure not liver failure. One of these children was a patient of 's neuro. And he had another child who would have died, had he not been in the hospital - his liver quit working. So, my Neuro says Depakote is off limits to children under 11. For some reason, 11 is the age they feel it is " safe. " He told me this when I asked about trying Depakote because I had read that it could help with behavior! Thankfully, he would not consider it. (Scares me to think about it now). Kathy in Tennessee Mom to - 6 - Keto kid since 02/00, Med free, seizures 95% reduced Mom to 'lil sis, a - 3 " Even to your old age and gray hairs I am He, I am He who will sustain you. I have made you and I will carry you; I will sustain you and I will rescue you. " Isaiah 46:4 Notices of this went to > psychiatrists and not to the neurologists. My son's psychiatrist is > now > trying to get this medication banned. I suggest you check pancreatic > status > not just liver status....Sincerely Joni M. RN " > > > Dr Tricarico...1- (He sounds strange on his answering > machine > but is not like that in real person ). He is trying to get this drug > banned > and he is the Source...Joni > > > > ________________________________________________________________ GET INTERNET ACCESS FROM JUNO! Juno offers FREE or PREMIUM Internet access for less! Join Juno today! For your FREE software, visit: http://dl.www.juno.com/get/tagj. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2001 Report Share Posted July 18, 2001 In my daughter's case, she had a tummyache one night and didn't eat dinner. (pre-diet). She woke up at 7 am and vomitted and continued every half hour until 10 am. Then she started vomitting coffee-ground looking stuff. VERY lethargic. I had her to the dr. office by noon and at 3 she was admitted to the hopsital for dehydration. She vomitted constantly until noon the following day, when a gastroenterologist gave her something to stop it (don't remember what). Then her belly became distended and she complained of lower back pain. It was so bad she could not find a sitting or laying position that was comfortable. All they would give her was tylenol, until they figured out it was pancreatitis. Then out came the demerol. When checking blood for symptoms, amalyse and lipase are the enzymes that would be elevated. Sandy, 's mom Re: Depakote What are the symptons of pancreatitis? Marie, mom to "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...
Guest guest Posted July 18, 2001 Report Share Posted July 18, 2001 In my daughter's case, she had a tummyache one night and didn't eat dinner. (pre-diet). She woke up at 7 am and vomitted and continued every half hour until 10 am. Then she started vomitting coffee-ground looking stuff. VERY lethargic. I had her to the dr. office by noon and at 3 she was admitted to the hopsital for dehydration. She vomitted constantly until noon the following day, when a gastroenterologist gave her something to stop it (don't remember what). Then her belly became distended and she complained of lower back pain. It was so bad she could not find a sitting or laying position that was comfortable. All they would give her was tylenol, until they figured out it was pancreatitis. Then out came the demerol. When checking blood for symptoms, amalyse and lipase are the enzymes that would be elevated. Sandy, 's mom Re: Depakote What are the symptons of pancreatitis? Marie, mom to "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...
Guest guest Posted July 19, 2001 Report Share Posted July 19, 2001 hi everyone, i need some help, we were trying to prepare my daughter to start the keto diet but first the neuro wanted to wean her from depakote. they added zonegran and started to taper the depakote (12 caps a day) its taken three months she had one cap to go,on monday she started having a statis event and was seen by the ER.since we started the zonegran she had been seizure free for the first time in her life!!they called her neuro and they did a loading dose of depakote in iv. and started her back on at 5 caps a day.we were told she just can't live without the depakote, i don't believe this. how can we get her off of it? i want to do the diet, its taken me more then a year to convince the neuro to do the diet, and now this? i have read all the posts about depakote and the diet. any ideas? we watched jess become so alert and talkative when the seizures stopped just imagine what she would do without all the meds in her system! any help would be wonderful, thanks michele, mom to jessica 7 yrs old, intractable seizures,progressive dysautonomia,g-tube fed, light of my life. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2001 Report Share Posted July 19, 2001 We saw withdrawal seizures at the tail end of our wean. Depakote does a major job on the metabolism, as well, even in kids where there's no obvious problem (anorexia or weight gain). Weaning the last capsule is very hard, but I would NOT use the dep to stop a status, I'd use klonopin or diastat (sparingly) and try to ride it out. We saw adverse affects from the dep for two months after the wean was complete, but I don't expect your neurologist to believe this, or the withdrawal seizures. They usually don't. In spite of a great deal of evidence to the contrary. Love, Deb > hi everyone, > i need some help, we were trying to prepare my > daughter to start the keto diet but first the neuro > wanted to wean her from depakote. they added zonegran > and started to taper the depakote (12 caps a day) its > taken three months she had one cap to go,on monday she > started having a statis event and was seen by the > ER.since we started the zonegran she had been seizure > free for the first time in her life!!they called her > neuro and they did a loading dose of depakote in iv. > and started her back on at 5 caps a day.we were told > she just can't live without the depakote, i don't > believe this. how can we get her off of it? i want to > do the diet, its taken me more then a year to convince > the neuro to do the diet, and now this? i have read > all the posts about depakote and the diet. any ideas? > we watched jess become so alert and talkative when the > seizures stopped just imagine what she would do > without all the meds in her system! any help would be > wonderful, thanks > michele, mom to jessica 7 yrs old, intractable > seizures,progressive dysautonomia,g-tube fed, light of > my life. > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2001 Report Share Posted July 20, 2001 Our dr. tried to wean depakote before the diet too, but it was done cold turkey. About 3 weeks after that my son started sleep sz and they kept increasing each night until he hat 26 one night. All they did at the hospital was give diazipam which didn't work (I think the dose was too low). 3/4 of the depakote was put back. Since then we've weaned the depakote slowly (more slowly than the dr. wanted). We saw withdrawal sleep sz on nights 3,10, and 14 after a drop in dose. The 10th day after was the worst. One thing that helped was reducing the ratio as we went along the wean. We have been free of the dreaded dep for 6 months. Since the 4th month we've seen some sleep sz which I think are due to the drug still hanging around. Others had had sz come back between 4-6 months after the wean and then disappear. BTW I have read in a booklet about epilepsy written by some top neurologists in the UK, that even AEDs that don't help, cause withdrawals. Best wishes Saro.....Rohan's mum Debbie Reynolds wrote: We saw withdrawal seizures at the tail end of our wean. Depakote does a major job on the metabolism, as well, even in kids where there's no obvious problem (anorexia or weight gain). Weaning the last capsule is very hard, but I would NOT use the dep to stop a status, I'd use klonopin or diastat (sparingly) and try to ride it out. We saw adverse affects from the dep for two months after the wean was complete, but I don't expect your neurologist to believe this, or the withdrawal seizures. They usually don't. In spite of a great deal of evidence to the contrary. Love, Deb > hi everyone, > i need some help, we were trying to prepare my > daughter to start the keto diet but first the neuro > wanted to wean her from depakote. they added zonegran > and started to taper the depakote (12 caps a day) its > taken three months she had one cap to go,on monday she > started having a statis event and was seen by the > ER.since we started the zonegran she had been seizure > free for the first time in her life!!they called her > neuro and they did a loading dose of depakote in iv. > and started her back on at 5 caps a day.we were told > she just can't live without the depakote, i don't > believe this. how can we get her off of it? i want to > do the diet, its taken me more then a year to convince > the neuro to do the diet, and now this? i have read > all the posts about depakote and the diet. any ideas? > we watched jess become so alert and talkative when the > seizures stopped just imagine what she would do > without all the meds in her system! any help would be > wonderful, thanks > michele, mom to jessica 7 yrs old, intractable > seizures,progressive dysautonomia,g-tube fed, light of > my life. > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2001 Report Share Posted July 21, 2001 Michele, Sounds like your neuro didn't have confidence in the diet and set you on a course for failure. Our neuro prevented us from starting the diet with all kinds of excuses for 2.5 years. When we started the diet we weaned during the beginning from the 4 daily capsules she was getting of depakote to zero over a 3 month cycle, we basically eliminated one capsule every other week per our neuro's recommendation. In your case you don't have the benefit of the diet to control seizures before you have the effect of the depakote is eliminated. Wishing you the best with this trying ordeal. --- " Person, DeEtte " wrote: > One word. . .withdrawl. I could almost bet money > that that's what happened > here and I'm so upset for you that you ended up in > this situation. Both > times my daughter was weaned from one drug to > another, we had a status > event. At the time I knew nothing about withdrawl > and just figured it meant > she needed more of one drug or the other. Now, > looking back, I can see very > clearly what happened -- she was being weaned too > quickly and her body was > in withdrawl. > > I was really worried that that would happen (knock > on wood, it hasn't yet) > upon weaning the Lamictal on the diet. I think the > worst thing they > probably could have done would have been to load the > Depakote -- that meant > you lost a lot of ground on your wean. You're right > to wean the Depakote > before the diet -- there's been so many posts about > Depakote with and > without the diet, including many, many stories about > withdrawl seizures and > weaning. She absolutely can -- and did -- live > virtually without the > Depakote. . .and sounds like she lived well. If it > were me, I would get the > Depakote out of her system. Try to taper back down > to that one cap -- you > may have to move very slowly. I went four times as > slow as my neuro had > recommended and needed to go even slower toward the > end. It doesn't make > much rational sense -- but the end of the wean, when > they're just holding > onto that drug, is the worst. > > Do you have any emergency meds at home -- rectal > Diastat, Ativan, etc? We > did have one complex partial that generalized during > our wean. I > administered the rectal Diastat at home and it > stopped before we got to the > Emergency Room. We actually turned around and went > home -- because we knew > all they would do would be to load her with more > drugs. Just my two cents > -- I realize this is scary and difficult. And, for > the record, even though > I know I sound very " anti-drug " -- it sounds like > Zonagram was doing good > things for you. . . so that might be a good answer > for now, at least until > you get up to speed on the diet. I'm sure you'll > get other good advice on > this list. Good luck and keep us posted.--DeEtte, > Mom to (6, keto-kid > since 1/01, med-free, seizures greatly reduced. . > .this week anyway!) and > (4), sdale, AZ > > Depakote > > > hi everyone, > i need some help, we were trying to prepare my > daughter to start the keto diet but first the neuro > wanted to wean her from depakote. they added > zonegran > and started to taper the depakote (12 caps a day) > its > taken three months she had one cap to go,on monday > she > started having a statis event and was seen by the > ER.since we started the zonegran she had been > seizure > free for the first time in her life!!they called her > neuro and they did a loading dose of depakote in iv. > and started her back on at 5 caps a day.we were told > she just can't live without the depakote, i don't > believe this. how can we get her off of it? i want > to > do the diet, its taken me more then a year to > convince > the neuro to do the diet, and now this? i have read > all the posts about depakote and the diet. any > ideas? > we watched jess become so alert and talkative when > the > seizures stopped just imagine what she would do > without all the meds in her system! any help would > be > wonderful, thanks > michele, mom to jessica 7 yrs old, intractable > seizures,progressive dysautonomia,g-tube fed, light > of > my life. > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
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