Guest guest Posted October 24, 2004 Report Share Posted October 24, 2004 Hello, This is my first time to actually write.... I've been reading comments and replies for a few months now.... Our son has been on the keto diet for 4 1/2 months now.... We had been giving him many supplements before the diet started, but because of carbohydrate limitations and " concern " about how these supplements may affect the diet outcome, were told to eliminate all supplements except his multi-vitamin. Colton only gets 3 carbs per meal, and is on a 4:1 ratio..... I have so many, many questions as we are vascillating about whether to stay on the diet.... but this is a good place to start. We finally began to wean his first medicine (carbitrol), but he had break-through seizures, so we reintroduced it again two days ago.... disappointing, to say the least. After reading so many messages, I'm wondering if these were " weaning " seizures..... how do you know? We wonder about acidosis.... How can you tell if your child has reached acidosis? We use urine sticks to check ketones.... Should we use blood sticks? Our neuro doesn't use them, and she doesn't want us to have our son's blood checked very often..... He takes depakote, carbitrol, and keppra. He also takes a cacimix and carnitine..... Also, where does one find " bickford " flavorings? They are not available in our local health food stores nor from the pharmacy. We don't have a keto support group. our hospital doesn't use one. Really wish we had one.... Looks like this may be our best avenue. Thanks in advance to anyone who responds to any of our questions.... , mom to Colton, age 13 (seizures began at age 10), possibly related to undetected strep virus..... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2004 Report Share Posted October 24, 2004 Make sure that you have a good vitamin and mineral supplement. Extra magnesium can help with reflux and constipation. Many medications can deliver more seizures when you try to wean. This can continue for 1 or 2 weeks. If you go too fast, you may have to reintroduce the medication, it can get so bad. It is best to have 3 meals and 2 snacks a day, especially a late meal or snack to get through to the morning. Acidosis is apparent from very high ketones. The symptoms are lethargy, panting, flushed cheeks. Vomiting may also occur. You can give a tablespoon of apple juice if you suspect acidosis. It is most likely in the evening when ketones are highest. If you are using depakote, this can throw off the ketones, but I can't remember how it works, only that it is one of the worst medications to have on the diet. Others here can probably help you with it. Usually blood checks aren't needed. They are being introduced by some centres to give another test for the diet. Most people get along with the urine test strips. It is more important to measure weight, etc, and keep good records. Some children do better with higher ketones, some with lower. Okay, I just looked up carbitrol. I know it as tegretol. We used it and weaned it while on the diet. It is one of the worst AED's to wean. It is well known to give withdrawal seizures. I have a good study on it. What we did that finally worked was to do a wean that was proportional. We cut 50% of the previous dose every 2 weeks or when things settled down. So it goes 80, 40, 20, 10, 5, etc. At the end, we cut the pills in half and gave them every day, then every other day, then every 4th day. Once we wound up in the ER with near status seizures when we weaned too fast. What is the weaning schedule that you attempted? What happened? Try to get off the depakote as it interferes with the diet. I would give this a higher priority than blood tests. Bill hemlockridgePA@... wrote: > Hello, > This is my first time to actually write.... I've been reading comments and > replies for a few months now.... Our son has been on the keto diet for 4 1/2 > months now.... We had been giving him many supplements before the diet started, > but because of carbohydrate limitations and " concern " about how these > supplements may affect the diet outcome, were told to eliminate all supplements except > his multi-vitamin. Colton only gets 3 carbs per meal, and is on a 4:1 > ratio..... I have so many, many questions as we are vascillating about whether to > stay on the diet.... but this is a good place to start. We finally began to wean > his first medicine (carbitrol), but he had break-through seizures, so we > reintroduced it again two days ago.... disappointing, to say the least. After > reading so many messages, I'm wondering if these were " weaning " seizures..... how > do you know? We wonder about acidosis.... How can you tell if your child has > reached acidosis? We use urine sticks to check ketones.... Should we use > blood sticks? Our neuro doesn't use them, and she doesn't want us to have our > son's blood checked very often..... He takes depakote, carbitrol, and keppra. > He also takes a cacimix and carnitine..... > > Also, where does one find " bickford " flavorings? They are not available in > our local health food stores nor from the pharmacy. > > We don't have a keto support group. our hospital doesn't use one. Really > wish we had one.... Looks like this may be our best avenue. > > Thanks in advance to anyone who responds to any of our questions.... > > , mom to Colton, age 13 (seizures began at age 10), possibly related to > undetected strep virus..... > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2004 Report Share Posted October 24, 2004 Thanks, Bill, for the info.... Colton has been on a very low dose of carbitrol for severl months. Tegretol was the first AED he was on, and as it became evident that his seizures weren't controlled by this, we added others, then others, then changed again and again over the last3 years. Each time we tried to wean completely from the Tegretol, his seizures got worse. So, we have been on this very low (not even therapeutic) level for quite some time. We switched to the time-release version of Tegretol (carbitrol) once he could swallow pills. He was taking only 100 mg in the am, and 100 in the pm.... For one week, we gave him only 100 mg in the am..... when things looked okay, we then removed the final 100 mg. He was fine for about 8 days, then the seizures came back. We thought we'd try to eliminate the carbitrol first because he was on such a low dose anyhow.... The next strategy we were going to implement was to start to remove keppra after he is stabilized for a week.... I'm wondering if we should instead start to remove Depakote (actually we're taking Depakene, the carb-free version). I'm surprized our Dr. hasn't recommended this since there seems to be so much info out there about how Depakote interferes with the diet. How do I get the info on Depakote and diet interference as well as carbitrol and weaning problems?..... Thanks again, for your info and support! ~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2004 Report Share Posted October 24, 2004 Hi , I guess I got cold feet when Colton's seizures returned.... You are right... we need to get rid of all the medicine before we make a decision about the effectiveness of the diet for our son.... and I need to expect some volatility in seizure control as we wean his meds..... Thanks for the reassurance.... ~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2004 Report Share Posted October 25, 2004 Like I said in my other message, I don't think it matters greatly what dose you are on when you are weaning tegretol. It is likely worse if you have been on for a long time. But whether or not the latter is true, the withdrawal seizures come at the end of the wean. For us, it was within about 1 to 3 days after we finally stopped the tegretol, similar to you. It makes only a small difference what level you start with. What worked was an exponential slow decrease, not the common doctor prescribed step-wise one. That is a disaster. If you start with 200, then go to 100, then to 50, then to 25, etc. Whatever is the smallest you can cut the pill (Even the time release one. That aspect is irrelevant.) When you get to that point, give the smallest dose once a day, then every other day, then every 4th day, then once a week. I know it sounds a bit odd, but it works. We decreased about every 2 weeks, so it will take a long time. But it beats a trip to the ER with status. I really feel sad for all the people who are stuck on tegretol because it is so very difficult to wean. I don't have the study on tegretol weaning at hand. It was a British study about 15 years ago, not diet related. It looked at weaning 2 or 3 medications and the effects of that. My personal study was my daughter. Dr. Freeman's book just talks about weaning phenobarbitol and acetazolamide (not used much these days) when starting the diet. I can't find anything there specifically about Depakote, only what I have read here from parents. Bill hemlockridgePA@... wrote: > Thanks, Bill, for the info.... > Colton has been on a very low dose of carbitrol for severl months. Tegretol > was the first AED he was on, and as it became evident that his seizures > weren't controlled by this, we added others, then others, then changed again and > again over the last3 years. Each time we tried to wean completely from the > Tegretol, his seizures got worse. So, we have been on this very low (not even > therapeutic) level for quite some time. We switched to the time-release version > of Tegretol (carbitrol) once he could swallow pills. He was taking only 100 > mg in the am, and 100 in the pm.... For one week, we gave him only 100 mg in > the am..... when things looked okay, we then removed the final 100 mg. He was > fine for about 8 days, then the seizures came back. > > We thought we'd try to eliminate the carbitrol first because he was on such a > low dose anyhow.... The next strategy we were going to implement was to start > to remove keppra after he is stabilized for a week.... I'm wondering if we > should instead start to remove Depakote (actually we're taking Depakene, the > carb-free version). I'm surprized our Dr. hasn't recommended this since there > seems to be so much info out there about how Depakote interferes with the diet. > > How do I get the info on Depakote and diet interference as well as carbitrol > and weaning problems?..... > > Thanks again, for your info and support! > ~ > > > > > Quote Link to comment Share on other sites More sharing options...
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