Guest guest Posted August 28, 2002 Report Share Posted August 28, 2002 Barb, We got our carnosine today (yes!). Since we are doing this on our own I have no idea the best way of giving it (once a day, twice a day?). Are you giving 's twice a day? The capsules we have are 500mg capsules. I'm considering giving 500mg twice a day since Dr. Chez's study shows them giving it twice a day. Our daughter, Shan, is 7 weighing 41 pounds. I know you are not an expert, but you have experience with this and have been in contact with Dr. Chez and their office. I appreciate any information/experience that you have to offer. I definitely like the idea of a higher loading dose to get it working quicker instead of waiting 2 weeks for it to be a therapeutic level. Our daughter's seizures come from the right frontal lobe and the night seizures have really affected her left side over the month. The GABA has helped slow the rate of weakness, but we need something to help her soon. If the carnosine does not help then our next step will be a 24 hour EEG and from it determine the best medication to try. She is not having day time seizures except for occasional simple partial ones, but the night seizures just won't let go. Thanks, Barb. Rhonda Philippines Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2002 Report Share Posted August 28, 2002 Hey Rhonda... Sorry I didnt get back to you on your other note...life seems to have gotten away from me. Im helping my Church open a preschool and our teacher got a different Job 2 weeks prior to our open!! AHHHHH Busy busy busy...thanks for puttting my name in the subject...Im skimming like crazy these days! Dr. Chez peddles his carnaware in 200mg doses (so you have to give more capsules and spend more!!!) So I believe he recommends starting 2-4 a day...at 800mg to 1200mgs a day (lower for autism or higher for seizures). Dosages didnt seem to depend on age or weight. Now with the Now brand since we have 500mg caps I started on 1 at breaky. Then I added one at dinner and finally one more at lunch which seems to be the amount that stopped s seizures. I added them at 4 day intervals. You have to remember is adult size. I have not seen any side effects....like hyperactivity or sleeplessness or behavior stuff. has always been extremely loud and talkative when seizures are held at bay so its hard to tell...LOLOLOL Interestingly enough...Im weaning the last of Dilantin. We were noticing an increase in auras and partials. So I increased back up to 1500 (I had lowered to 1000 when we got control) and BINGO...they stopped again with in a day!....man oh man I love this stuff!!! FYI....we tried Gaba (kirkmans) and it increased bryans seizures as well as the melatonin did the same! is opposite as your daughter. His seiuzres come from what is left of the left side of his brain. He had brain surgery (functional hemisperectomy) last februrary due to Rasmussens Encephalitis, and its my guess that there is a nerve still connected along the remaining vascular. Now were dealing with Migraine headaches rather then status seizures in the spring and fall. and we still have auras and partials rather then complex partials and grand mals. so you can totally disconnect half a brain but like I tell these docs you still have an immune system totally out of control. BTW...My appointment last friday went fine...My local Doc is wonderful!! I told her that Dr. Wyllie blew off the effects of carnosine and told me to up the keppra and I didnt. I can be totally honest with this neuro and she knows and actually understands me...LOL so Dr. proceeds to tell me that Dr. Wyllie was taught that way...well what she actually said was " thats the way 'WE' are taught " .....and asked me for a copy of Dr. Chez studies. We discussed HBOT and stem cells. And she gave me my prescriptions so I can wean the drugs the way " I " want to. What a wonderful doc!!! Prayin that you get some relief with the carnosine!! BArb On Wed, 28 Aug 2002 20:16:52 +0800 " rackerman " writes: > Barb, > > We got our carnosine today (yes!). Since we are doing this on our > own I > have no idea the best way of giving it (once a day, twice a day?). > Are > you giving 's twice a day? ________________________________________________________________ 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/web/. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2002 Report Share Posted August 28, 2002 Wow! Thanks for the quick and in depth reply. Very helpful! I think I will start at 500mg twice a day. If Shan has difficulty tolerating it then I will maybe drop back to ½ capsule twice a day and increase slower. She already takes L-carnitine so hopefully she will tolerate this without any problems. I’ll keep you posted. I wish, and I’m sure you wish, I had some profound ideas for and his having to deal with the migraines, partials, and auras. The auras/simple partials is the main reason Shan is taking L-carnitine. In the first months of starting the diet (Feb. 2002) we began carnitine and it obviously helped with the day time simple partials/auras. If we had her take it immediately on waking, it usually kept her from having any seizures. When it seemed we no longer needed it we tried taking her off it but we noticed immediately a decrease in energy. Lately, there has been a return of the simple partials/auras (maybe due to decreasing her ratio to 3.3 from 3.5) so I have been once again making sure she gets it as soon as she wakes up (had been giving it at breakfast) and during the day today she had no seizure problems. How encouraging for you to find a neurologist who you can connect well with. And, there has to be a special person out there who God has planned for your preschool, so keep plugging away and trusting. Praying too that we will find relief through the carnosine, Rhonda Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 2002 Report Share Posted August 29, 2002 Hey...no problem...willing to help in any way I can... Im sorry Im not familiar with your situation...I use to follow this list very close and keep up with the majority of the " regulars " but that was back when this was on 'squish' and my life has gotten alot busier since then. Ive always felt that this list saved s life in the beginnings of the diet over 5 years ago...and I have hung around all these years to try and give something back. So with all that said...and not being totally familiar with your situation...I would check into fatty acids if I were you. You have a clue with the carnitine...there is something there in the breakdown and absorption of fats. has a similar problem. some questions...what fats are you using?? what drugs has she been on...depakote?? do you use digestive enzymes? I thought I remembered you being in that discussion. Also what supplements and other nutrients are you using?? Oh yeah...I do wish I could find a solution to s problems. the Carnosine does help with the seizures, but again...were just controlling a symptom. I do plan to e-mail a Dr. at Duke who is the " expert " on Rasmussens. I know there has got to be someone out there with the answers and maybe he might have a clue. These Migraines that has totally wipe him out and its almost worse then the seizures were prior to surgery. At least with the seizures he could pick up and continue after the seiuzre was over. With these migraines by 7-8 at night he just goes to bed...he cant function! I know its allergies and an auto immune system out of control! He is having them right along with when he use to go status....every spring and fall. But at his dr appt Friday, she told me that they really dont know what to do but treat the symptoms... didnt mean to get carried away at the keyboard there...I really have to get busy...let me know how things go... TTFN... Barb On Wed, 28 Aug 2002 22:34:08 +0800 " rackerman " writes: > Wow! Thanks for the quick and in depth reply. Very helpful! I > think I > will start at 500mg twice a day. If Shan has difficulty tolerating > it > then I will maybe drop back to ½ capsule twice a day and increase > slower. She already takes L-carnitine so hopefully she will > tolerate > this without any problems. I’ll keep you posted. I wish, and I’m > sure > you wish, I had some profound ideas for and his having to > deal > with the migraines, partials, and auras. The auras/simple partials > is > the main reason Shan is taking L-carnitine. In the first months of > starting the diet (Feb. 2002) we began carnitine and it obviously > helped > with the day time simple partials/auras. If we had her take it > immediately on waking, it usually kept her from having any > seizures. > When it seemed we no longer needed it we tried taking her off it but > we > noticed immediately a decrease in energy. Lately, there has been > a > return of the simple partials/auras (maybe due to decreasing her > ratio > to 3.3 from 3.5) so I have been once again making sure she gets it > as > soon as she wakes up (had been giving it at breakfast) and during > the > day today she had no seizure problems. How encouraging for you to > find > a neurologist who you can connect well with. And, there has to be > a > special person out there who God has planned for your preschool, so > keep > plugging away and trusting. > > Praying too that we will find relief through the carnosine, > Rhonda > > ________________________________________________________________ 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/web/. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 2002 Report Share Posted August 29, 2002 Rhonda -- just a thought. We started Leo on Carnosine during the day and it made him hyperactiveand irritable. So we dropped it. Later, we started it again -- but at night, with no problem. After two weeks we started up the daytime dose again.. This time, I guess, his body was used to it, so no hyperactivity. I guess what I'm saying is if you have any side effects, you may want to start at night. That said, Leo still has night time seizures -- a couple of short ones right after falling asleep, then a few early morning. But nothing during the day, amazingly, except some subclinical stuff. We're going to make an appointment with the full keto team at CHOPS to see if they have any great ideas. Good luck with the Carnosine. Jane Later Quote Link to comment Share on other sites More sharing options...
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