Guest guest Posted October 4, 2001 Report Share Posted October 4, 2001 What an absoloute sin - poor kid! Beware that you don't return to the dr, he sees how bad is doing, says well clearly this diet isn't working, we will have to take him off it and try more drugs. I would love to be pleasantly suprised and not see that happen but I bet you it will. Don't know if its intentional or not, but it sure looks like a lot of drs set up the diet to fail, perhaps so they can justify their own initial thoughts that there is no way it could work and then they can say, see, I told you so! If dr won't agree to try it your way, I would run quick to find another. And if I couldn't, I would seriously consider doing it my own. It may work, it may not, but you will never know this way. All the best , mom of (8), ketokid since 2/98 Terry Krumrei wrote: HI Everyone, We are just getting finished with our 6 week stint of completely obeying the neurologist and dietitian regardless of my mothers intuition. It has been very difficult. We have raised his felbatol from 500 mg to 900 mg. He weighs 11 kilos. (same weight since Jan). We have also increased his depakote from 375mg daily to 500mg. The increases in medications have just increased his seizures. We also have increased his ratio to 4:1. It is very difficult since the medication caused anorexic behavior. We have to force feed him 1/2 the time and sometimes he doesn't finish his food. He has also lost alot of his balance with the med increase. I had been refusing to increase medication and asking to wean instead so I could see if the diet was working, but he wanted total control first. I go in for an eeg on the 9th and hopefully a cat scan. Nick's head has only grown 1 inch in 13 months. The neuro wants to measure him himself before he agrees to any tests. 10 days after making changes we were in the hospital with respiratory infection for 4 days and are still doing breathing treatments 4 weeks later. We also are seeing negative changes in his cbc's. The rbc is below normal and mcv's are getting larger. But, we were forced to go off our all natural nutrients and go on bugs bunny with iron. There is much less b-6 and folic acid, which could be the culprit behind the blood problems and the lingering sickness. Each increase we do on our valproic acid causes our blood levels to drop. They were at 87 when we were on 375 a day and now they are at 69. I hope the neuro doesn't call and ask me to raise his meds again. Our felbatol level is 111, which is plenty high. I am planning on asking again for a med wean, starting with the depakote. I have done it their way for 6 weeks. I think the diet deserves a chance. We are using diastat 3-4 days a week the way it is. He has started getting seizures while he is sleeping in the morning and they wake him up. This is new with the med increase. I will have to get a new neuro if I can't get any changes. I have added his nutrients back into his diet today and decreased his ratio back to 3.5:1 to see if that would help slow the seizures. We have been on the diet now for 4 months and only saw a positive change during a 7 day period while we were at 3:1 ratio. The seizures increased at 3.25 and tripled at 3.5:1. Lord willing we will see something positive again I would really like to throw up my hands and say "NO MORE DOCTORS". I am going to drop the diet with the neurologist. We will work on our own at home. The way it is now I report to the dietitian, who contacts the neuro and then calls me to give me permission to make changes a week or so later. I had ordered 2 cases of beech nut meats from the factory (no carbs) and use chicken breasts. The dietitian wanted to make my menus, so I gave her a list of the foods I have on hand. She sent me menus using gerber meats. I e-mailed and let her know the mistake and heard no response. So, I made my on menus. I know alot of people have said that they didn't get full control until they were weaned off the meds. I am ready to get a helmet and try it. Nick is still just having myclonic jerks. Sometimes it is just a mild pout with a little eye deviation. We had one episode of a 15 minute cluster of jerks when I ran out of diastat. We were on the way to the hospital when they quit. These are usually when he first wakes up , but sometimes after his morning nap if he doesn't have them when he first wakes up. Then he has 3-6 seizures thru out the day with 2-8 jerks in each seizure. They could definitely be worse, but they weren't any worse then this before we started the meds. Our worst seizures have been while toxic on medications by well meaning neuro's. Anyway, I know that none of us have the answers and all of our kids are different. SO, thanks for letting me vent. I already had my good cry this morning when I got the labs back. Oh well. It could always be worse. Take Care and God Bless Dianna and 20 months DS,IS keto kid Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2001 Report Share Posted October 4, 2001 So sorry you're going through all this. It sounds like to me these particular medicines aren't working. We've been on them all, and nothing worked... we were up to 9 Depakote capsules a day at one point and they finally decided it wasn't working (and we changed neuro's). Hang in there... I agree you want to get total control but you might just want to try another med to do it... Tyler's completely off of them and the final phase of getting off phenobarbitol was tough on him -- but he made it and he's been seizure free since starting the diet over a year ago... Hang in there and do what you think is right... I wouldn't drop doctors altogether -- you just need to find one who's willing to try something new and respects the diet... sometimes they are hard to come by.. we've been through three of them up until we joined s Hopkins, and they are wonderful about responding with meal plans -- usually the same day I request one. God Bless you.... Sheri - mom to Tyler, 9, keto kid since 5/00, and Sara-6 --- Terry Krumrei wrote: > HI Everyone, > We are just getting finished with our 6 week stint > of completely obeying > the neurologist and dietitian regardless of my > mothers intuition. It > has been very difficult. We have raised his > felbatol from 500 mg to 900 > mg. He weighs 11 kilos. (same weight since Jan). We > have also increased > his depakote from 375mg daily to 500mg. The > increases in medications > have just increased his seizures. We also have > increased his ratio to > 4:1. It is very difficult since the medication > caused anorexic > behavior. We have to force feed him 1/2 the time > and sometimes he > doesn't finish his food. He has also lost alot of > his balance with the > med increase. I had been refusing to increase > medication and asking to > wean instead so I could see if the diet was working, > but he wanted total > control first. I go in for an eeg on the 9th and > hopefully a cat scan. > Nick's head has only grown 1 inch in 13 months. The > neuro wants to > measure him himself before he agrees to any tests. > 10 days after making > changes we were in the hospital with respiratory > infection for 4 days > and are still doing breathing treatments 4 weeks > later. We also are > seeing negative changes in his cbc's. The rbc is > below normal and mcv's > are getting larger. But, we were forced to go off > our all natural > nutrients and go on bugs bunny with iron. There is > much less b-6 and > folic acid, which could be the culprit behind the > blood problems and the > lingering sickness. Each increase we do on our > valproic acid causes > our blood levels to drop. They were at 87 when we > were on 375 a day and > now they are at 69. I hope the neuro doesn't call > and ask me to raise > his meds again. Our felbatol level is 111, which is > plenty high. I am > planning on asking again for a med wean, starting > with the depakote. I > have done it their way for 6 weeks. I think the > diet deserves a > chance. We are using diastat 3-4 days a week the > way it is. He has > started getting seizures while he is sleeping in the > morning and they > wake him up. This is new with the med increase. I > will have to get a > new neuro if I can't get any changes. I have added > his nutrients back > into his diet today and decreased his ratio back to > 3.5:1 to see if that > would help slow the seizures. We have been on the > diet now for 4 months > and only saw a positive change during a 7 day period > while we were at > 3:1 ratio. The seizures increased at 3.25 and > tripled at 3.5:1. Lord > willing we will see something positive again I > would really like to > throw up my hands and say " NO MORE DOCTORS " . I am > going to drop the > diet with the neurologist. We will work on our own > at home. The way it > is now I report to the dietitian, who contacts the > neuro and then calls > me to give me permission to make changes a week or > so later. I had > ordered 2 cases of beech nut meats from the factory > (no carbs) and use > chicken breasts. The dietitian wanted to make my > menus, so I gave her a > list of the foods I have on hand. She sent me menus > using gerber > meats. I e-mailed and let her know the mistake and > heard no response. > So, I made my on menus. I know alot of people have > said that they > didn't get full control until they were weaned off > the meds. I am ready > to get a helmet and try it. Nick is still just > having myclonic jerks. > Sometimes it is just a mild pout with a little eye > deviation. We had > one episode of a 15 minute cluster of jerks when I > ran out of diastat. > We were on the way to the hospital when they quit. > These are usually > when he first wakes up , but sometimes after his > morning nap if he > doesn't have them when he first wakes up. Then he > has 3-6 seizures thru > out the day with 2-8 jerks in each seizure. They > could definitely be > worse, but they weren't any worse then this before > we started the meds. > Our worst seizures have been while toxic on > medications by well meaning > neuro's. Anyway, I know that none of us have the > answers and all of our > kids are different. SO, thanks for letting me vent. > I already had my > good cry this morning when I got the labs back. Oh > well. It could > always be worse. > Take Care and God Bless > Dianna and 20 months DS,IS keto kid > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2001 Report Share Posted October 5, 2001 I feel so angry with these neuros who don't listen to the parents. It is obvious is on too high a dose of meds. I think it's time to find another team. You have done what they wanted against your better judgement, to see if things work out. They haven't, so it's time to ditch them. Good luck Saro....Rohan's mum Quote Link to comment Share on other sites More sharing options...
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