Guest guest Posted October 7, 2004 Report Share Posted October 7, 2004 Here is more info on our situation. We went ot our 3 month follow up in April and discussed the weaning of the pheno. We were told to give her polycitra for two weeks and then we would start the wean. After two weeks he said lets wait and see. Must have made some more diet changes - then it became wait until we come in July for 6 month follow up. She has now had as many seizures in one month as she did the month we started. In July it was lets add carnitor and call back. I made him promise that if I added carnitor that we would still be able to wean. This is something we have been pushing since day one but it seems they like diet changes first. (okay, I can see both sides) We were getting ready to move in August and my thinking was if I am packing and she is still having seizures so what if we are traveling and having seizures? Lets move with the wean. Talked to dr. he said it was up to us had to go throught some stuff because we would have to switch to liquid form and keto friendly pheno. he also made it clear that if it was his kid he wouldn't do it but left it to us. About an hour later we had an email saying that he refused to do the wean and we should wait until we are settled. okay I was furious. It was left to us we didn't even have a chance to discuss it and get back with him and he changed his tune. (not the first time). Last Wednesday spoke with neuro still refused wean wants blood work and EEG done and then will consider. Okay setting up appointments and everything is scheduled. On Friday she has her worst day since on the diet and I have to give diastat. Now after that it is add MCT oil and wait for eeg to be done on Oct.19th.These are my questions: ~If the diet works best without meds why still meds? ~If she is still seizing and on the diet doesn't it seem that the meds aren't working? Here I thought we were doing the diet at the best possible place in the world. I love the dietician! It's the doctor who is not listening. My gut tells me he sees us as a success story because the absence seizures are gone. But what the tonic clonics that started last summer, or the night time ones that started in July? We never had those before! Thanks for taking the time to read and allowing me to vent. I have been reading here for over a year and am not to big on posting. ~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2004 Report Share Posted October 7, 2004 You are right.. Bill mdcherry0917 wrote: > > Here is more info on our situation. > > We went ot our 3 month follow up in April and discussed the > weaning of the pheno. We were told to give her polycitra for two > weeks and then we would start the wean. After two weeks he > said lets wait and see. Must have made some more diet > changes - then it became wait until we come in July for 6 month > follow up. She has now had as many seizures in one month as > she did the month we started. > > In July it was lets add carnitor and call back. I made him > promise that if I added carnitor that we would still be able to > wean. This is something we have been pushing since day one > but it seems they like diet changes first. (okay, I can see both > sides) We were getting ready to move in August and my thinking > was if I am packing and she is still having seizures so what if we > are traveling and having seizures? Lets move with the wean. > Talked to dr. he said it was up to us had to go throught some > stuff because we would have to switch to liquid form and keto > friendly pheno. he also made it clear that if it was his kid he > wouldn't do it but left it to us. About an hour later we had an > email saying that he refused to do the wean and we should wait > until we are settled. okay I was furious. It was left to us we didn't > even have a chance to discuss it and get back with him and he > changed his tune. (not the first time). > > Last Wednesday spoke with neuro still refused wean wants > blood work and EEG done and then will consider. Okay setting > up appointments and everything is scheduled. On Friday she > has her worst day since on the diet and I have to give diastat. > Now after that it is add MCT oil and wait for eeg to be done on > Oct.19th.These are my questions: > ~If the diet works best without meds why still meds? > ~If she is still seizing and on the diet doesn't it seem that the > meds aren't working? > > > Here I thought we were doing the diet at the best possible place > in the world. I love the dietician! It's the doctor who is not > listening. My gut tells me he sees us as a success story > because the absence seizures are gone. But what the tonic > clonics that started last summer, or the night time ones that > started in July? We never had those before! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2004 Report Share Posted October 7, 2004 Your situation doesn't sound good. It makes you want to go ahead and wean without permission and not let the neuro know! How have her seizures been without the diet - better or worse? Have you any idea of what happened when and why? For example our history has gone something like this: Develop epilepsy at age 4 Atypical absences only at this stage Introduce Depakote/Epilim Very soon after this the myoclonics start Gradual deterioration over the next few years, myoclonics start to " freeze frame " (maybe they were triggering a weird absence) Lamotrigine introduced, no improvement, so withdrawn Clobazam introduced, no improvement, so withdrawn, Ethosuxamide introduced, no improvement, so withdrawn Topiramate introduced, significant deterioration, we lasted 2 weeks on this and then came off, much to the annoyance of the consultant, after this the freeze frame jerks were longer Oct 2002 Ben was at his worst - twenty or more seizures a day, very " absent " most of the day Improved a little over the next few months and stabilised but still far too many seizures Feb 04 we start keto, still on 1100mg Epilim/Dep per day. Very soon his mind starts to clear but seizures continue at the same frequency May 04 we start the wean, at first quite quickly and then slow right down Longer seizures sometimes up to 3 minutes in duration School work improving noticeably though By August we notice the longer seizures have reduced in length to 30 seconds on average September - teachers can't believe it's the same child Last Thursday we are finally drug free Almost the same day we see no more weird, long myoclonic absences, we are back to small jerks Ben is unbelievably happy and lively and improving with every day that passes This is why I really hope you can ditch the drugs somehow For us it has been the key Rose Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 2004 Report Share Posted October 8, 2004 , I am sorry, but you need to find another neurologist! The phenobarb is not stopping the seizures, it's probably making it worse for your daughter. That is what happened to my little Kristan! Is your daughter very sedated or like a zombie on the pheno? Kristan was on all drugs we tried (we must have tried a dozen) and they just made her go backwards. The neuro saying if this was his kid, he wouldn't do the wean, that's crap, would he keep drugging his child knowing it is not helping, he probably said that so he can keep making money on the drug he is prescribing. I'm sorry, but your neuro is not helping and I believe he is making things worse. Good luck, I know you have a lot to deal with, but I hope you are able to wean the drugs as you won't know how your daughter will be on the diet until the drugs are gone. Satnam, mom to Kristan, 22 months Keto kid since August 2003, currently weaning from the diet > > Here is more info on our situation. > > We went ot our 3 month follow up in April and discussed the > weaning of the pheno. We were told to give her polycitra for two > weeks and then we would start the wean. After two weeks he > said lets wait and see. Must have made some more diet > changes - then it became wait until we come in July for 6 month > follow up. She has now had as many seizures in one month as > she did the month we started. > > In July it was lets add carnitor and call back. I made him > promise that if I added carnitor that we would still be able to > wean. This is something we have been pushing since day one > but it seems they like diet changes first. (okay, I can see both > sides) We were getting ready to move in August and my thinking > was if I am packing and she is still having seizures so what if we > are traveling and having seizures? Lets move with the wean. > Talked to dr. he said it was up to us had to go throught some > stuff because we would have to switch to liquid form and keto > friendly pheno. he also made it clear that if it was his kid he > wouldn't do it but left it to us. About an hour later we had an > email saying that he refused to do the wean and we should wait > until we are settled. okay I was furious. It was left to us we didn't > even have a chance to discuss it and get back with him and he > changed his tune. (not the first time). > > Last Wednesday spoke with neuro still refused wean wants > blood work and EEG done and then will consider. Okay setting > up appointments and everything is scheduled. On Friday she > has her worst day since on the diet and I have to give diastat. > Now after that it is add MCT oil and wait for eeg to be done on > Oct.19th.These are my questions: > ~If the diet works best without meds why still meds? > ~If she is still seizing and on the diet doesn't it seem that the > meds aren't working? > > > Here I thought we were doing the diet at the best possible place > in the world. I love the dietician! It's the doctor who is not > listening. My gut tells me he sees us as a success story > because the absence seizures are gone. But what the tonic > clonics that started last summer, or the night time ones that > started in July? We never had those before! > > Thanks for taking the time to read and allowing me to vent. I > have been reading here for over a year and am not to big on > posting. > ~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 2004 Report Share Posted October 8, 2004 Mike did much better when we weaned the phenobarb from him. It also dulled the effects of clonazepam (benzodiazepine) so when we reduced the phenobarb, we saw huge increases in blood levels of clonaz (really huge! - from 80 - before weaning phenobarb - to 275 at one point during weaning!) Took us 3 tries to finally get Mike off phenobarb, we went really slowly but we did get him off, and we did see a bit of an increase in seizures here and there during weans, but everything leveled out when it was gone. Anyway, best of luck Jenn Re: MCT and more info , I am sorry, but you need to find another neurologist! The phenobarb is not stopping the seizures, it's probably making it worse for your daughter. That is what happened to my little Kristan! Is your daughter very sedated or like a zombie on the pheno? Kristan was on all drugs we tried (we must have tried a dozen) and they just made her go backwards. The neuro saying if this was his kid, he wouldn't do the wean, that's crap, would he keep drugging his child knowing it is not helping, he probably said that so he can keep making money on the drug he is prescribing. I'm sorry, but your neuro is not helping and I believe he is making things worse. Good luck, I know you have a lot to deal with, but I hope you are able to wean the drugs as you won't know how your daughter will be on the diet until the drugs are gone. Satnam, mom to Kristan, 22 months Keto kid since August 2003, currently weaning from the diet Quote Link to comment Share on other sites More sharing options...
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