Guest guest Posted July 8, 2004 Report Share Posted July 8, 2004 hi i have a 3 1/2 year old with varying sezuires he has been on the diet since may 25 he was sezuire free for three weeks and now we are back to where we started has any one had this happen and how long does it last we have changed nothing except we took away one 15 mg topamax pill and 2 days later we had a sezuire and we added it back right away and have not returned we have lowered his ratio within the week does anyone have any suggestions Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2004 Report Share Posted July 8, 2004 You have to keep going with those weans. Take them nice and slow, expect fallout. You will have improvement and you will have some days worse than ever. Once it is all gone, you will see it balance out. If he's still seizing, why did you lower? Is the topamax making him too acidic? You may need to give him some time and try again. Once the diet sets in after the first few weeks, the medication usually becomes more potent in the body. Regardless of where you end up on topamax level, his loss of seizure control tells you that a change is probably needed. Do you have any better control yet? Ann keto diet hi i have a 3 1/2 year old with varying sezuires he has been on the diet since may 25 he was sezuire free for three weeks and now we are back to where we started has any one had this happen and how long does it last we have changed nothing except we took away one 15 mg topamax pill and 2 days later we had a sezuire and we added it back right away and have not returned we have lowered his ratio within the week does anyone have any suggestions " 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 8, 2004 Report Share Posted July 8, 2004 > hi i have a 3 1/2 year old with varying sezuires he has been on the > diet since may 25 he was sezuire free for three weeks and now we are > back to where we started has any one had this happen and how long > does it last we have changed nothing except we took away one 15 mg > topamax pill and 2 days later we had a sezuire and we added it back > right away and have not returned we have lowered his ratio within the > week does anyone have any suggestions Your story sounds exactly like what we have been going through! Unfortunately, I don't have any answers for you yet. My son, has been on the ketogenic diet since 1/27/04. He too was seizure free for 3 weeks! After that, it has been a downhill slide. He was on 30 mg Topmax in the AM and 15 mg in the PM. We have gradually weaned him off all his Topamax (as of 2 weeks ago). We didn't know if it might be interfering with the diet and it certainly wasn't helping. His seizures haven't improved any. He is having 6-8 per day. His Carnitine levels have been extremely low and he has been taking a prescription medicine called Carnitore. We are still in the process of taking blood tests to see if that could be affecting the diet. Sorry I couldn't be more help, but I can keep you posted if you like! Ann Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2004 Report Share Posted July 8, 2004 HI - this sound familiar. My daughter Lily has been on the diet since March 16 and we just had a three week period of no seizures. The dietitian thoguht she gained a little weight, so we tweaked the diet a bit and she started having seizures. Worse, they picked up in frequency. She mostly has atonic clusters. Her frequency lately was 6 days no seizure, then 4 then 2. She is pretty knocked out after an episode. We are going a bit higher on her ratios. She was at 3.5:1 (a bit higher because I was a little heavy onthe fats) and will go to 4:1. She is on 30 mg topamax AM and PM and .125 Klonapin AM and PM. Those dosages have been reduced from where she was. I have some of the same questions you have as to how long this might last and how to get back to a controlled period. I wish you the best with your son. Caitlin > > hi i have a 3 1/2 year old with varying sezuires he has been on the > > diet since may 25 he was sezuire free for three weeks and now we are > > back to where we started has any one had this happen and how long > > does it last we have changed nothing except we took away one 15 mg > > topamax pill and 2 days later we had a sezuire and we added it back > > right away and have not returned we have lowered his ratio within > the > > week does anyone have any suggestions > > > Your story sounds exactly like what we have been going through! > Unfortunately, I don't have any answers for you yet. My son, > has been on the ketogenic diet since 1/27/04. He too was seizure > free for 3 weeks! After that, it has been a downhill slide. He was > on 30 mg Topmax in the AM and 15 mg in the PM. We have gradually > weaned him off all his Topamax (as of 2 weeks ago). We didn't know > if it might be interfering with the diet and it certainly wasn't > helping. His seizures haven't improved any. He is having 6-8 per > day. His Carnitine levels have been extremely low and he has been > taking a prescription medicine called Carnitore. We are still in the > process of taking blood tests to see if that could be affecting the > diet. Sorry I couldn't be more help, but I can keep you posted if > you like! > > Ann Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2004 Report Share Posted July 8, 2004 Your seizure may have been from withdrawl, doesn't necessarily means he needed the drug. I would put things back exactly where they were when it was good, wait a few weeks to let him readjust, then try taking away a smaller amount of the topomax. Wait out the seizures for a couple of weeks after that (you can use something like diastat if you need to to get through that time), then see where you are. Should give you a better sense of whether he actually needs the drug , 's mom avilaheather wrote: > hi i have a 3 1/2 year old with varying sezuires he has been on the > diet since may 25 he was sezuire free for three weeks and now we are > back to where we started has any one had this happen and how long > does it last we have changed nothing except we took away one 15 mg > topamax pill and 2 days later we had a sezuire and we added it back > right away and have not returned we have lowered his ratio within the > week does anyone have any suggestions > > > > " 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 8, 2004 Report Share Posted July 8, 2004 HEather, My son had good control on the diet until we started weaning the meds. I was so thankful to members of this group for quickly informing me that weaning medication often causes seizures. We stuck with the wean, though it was very difficult both seizure-wise and emotionally on my son (and me) and eventually the diet was able to do it's magic once again. Things may get worse before they get better if you decide to continue the wean, but hopefully in the end you will get complete control again. My doctor says " the diet works best without medication " and also, " early seizure contol on the diet is a good sign. " Having said this, we have no experience weaning topomax. Maybe others have been through that. > hi i have a 3 1/2 year old with varying sezuires he has been on the > diet since may 25 he was sezuire free for three weeks and now we are > back to where we started has any one had this happen and how long > does it last we have changed nothing except we took away one 15 mg > topamax pill and 2 days later we had a sezuire and we added it back > right away and have not returned we have lowered his ratio within the > week does anyone have any suggestions Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2004 Report Share Posted July 11, 2004 Med reductions can bring seizures back. It is highly likely even thought most neuros say it is not. Hang in there. Hopefully once the wean has stabilized, he will return to normal. Quote Link to comment Share on other sites More sharing options...
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