Guest guest Posted August 4, 2003 Report Share Posted August 4, 2003 I don't know how far you are from Gainsville, Florida. Its a little over 2 hours east of Tallahassee. Shands has at least 2 neuros that support the diet. We got in quickly but that is because of some cancellations. I think it is only the inital appointment that takes a while to get with most doctors. A doctor who is busy may not be so bad though, I know that I don't go back to a " bad " doctor a second time, but for a good one I am willing to wait. The ones who aren't so busy you have to wonder why they aren't. I am sorry, of course there could be great doctors that aren't busy. Anyway. The doctors at Shands haven't been perfect but we don't have any real problems with them either. I hope everything works out for you, and you find a good doctor close to home. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2003 Report Share Posted August 4, 2003 Tricia, we are in Tampa and are getting ready to start the diet. Our daughter is 2 1/2 and is on Depakote, Topamax, and Keppra (she has LGS, previously had IS). We see Dr Jacinto and he has connected us with a dietitan locally that we can work with. I am also going to call Hopkins to see where they recommend on starting the diet. Gainseville is always a possibility. We blew off the diet 8 months ago and figured we would test out a few more meds. Well we've tried 7-8 different meds and no promising results. Now I am kicking myself for not starting the diet sooner. The way I look at it is that everyday with seizures is another day we take a step backwards (we haven't had a seizure free day since Oct 31, 2001) I would try to start the diet as soon as possible, in the mean time you might consider Depakote, it is the only meds that has given us a little improvement. ??? need advise... Hi, My name is Tricia. I have a daughter named Lacey (7 years old) She started having seizures around the age of 1. At that time she was starting to try and say a few words. Mostly sounds. Her seizures progressively got worse. She's been on so many medicines. Her seizures are " under control " at this point. She takes Lamictal and Topamax. (we recently weened her off of her dilantin). It seems now she only has seizures when she has a low grade temp. We are wanting her off of her medications. We have seen how much more responsive she is when she's not " doped " up. I don't know if ket. diet is right for her. Is it a trial and error type thing? Of course, we talk to her physician when she was 2 about putting her on the diet. He was completely against it. He now has moved and we are changing nerologist. I am looking for one that specifically supports the diet. I've been told that Dr. Ben Renfro in Pensacola Florida supports the diet. He's the closest one to us. (about an hour drive). We can't get an appointment with him until the first of October. I don't know if we want to see a doctor that is so busy..... Looking for some advise... please.... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2003 Report Share Posted August 4, 2003 thanks. The only thing that I worry about is getting in after the 1st visit... like, if she starts having problems or something.... But, yes i get where you are coming from... anyway... it's either pensacola,,, 1 hour away or Huntsville, Alabama which is about 4 or 5 hours.... we live in Gulf Shores, Alabama.... tricia Re: ??? need advise... I don't know how far you are from Gainsville, Florida. Its a little over 2 hours east of Tallahassee. Shands has at least 2 neuros that support the diet. We got in quickly but that is because of some cancellations. I think it is only the inital appointment that takes a while to get with most doctors. A doctor who is busy may not be so bad though, I know that I don't go back to a " bad " doctor a second time, but for a good one I am willing to wait. The ones who aren't so busy you have to wonder why they aren't. I am sorry, of course there could be great doctors that aren't busy. Anyway. The doctors at Shands haven't been perfect but we don't have any real problems with them either. I hope everything works out for you, and you find a good doctor close to home. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2003 Report Share Posted August 4, 2003 For some reason our daughters body would not process the depakote correctly. It came out in her stool.... and her levels were always low no matter how much the doc. increased it..... We never figured that out... she's been on: tegretol phenobarbital (had a hard time weening her off of this one....) dilantin depakote keppra She now is on lamictal and topamax... with pretty good control..... Topamax makes her really irritable..... we back her down on that and she's better..... So we are pretty sure the topamax affects her in a not so good way.... when she started the topamax she started banging her head on the floor constantly... that's when we back off the topamas to 25 mg twice a day... We saw a big improvement in her behavior..... ??? need advise... Hi, My name is Tricia. I have a daughter named Lacey (7 years old) She started having seizures around the age of 1. At that time she was starting to try and say a few words. Mostly sounds. Her seizures progressively got worse. She's been on so many medicines. Her seizures are " under control " at this point. She takes Lamictal and Topamax. (we recently weened her off of her dilantin). It seems now she only has seizures when she has a low grade temp. We are wanting her off of her medications. We have seen how much more responsive she is when she's not " doped " up. I don't know if ket. diet is right for her. Is it a trial and error type thing? Of course, we talk to her physician when she was 2 about putting her on the diet. He was completely against it. He now has moved and we are changing nerologist. I am looking for one that specifically supports the diet. I've been told that Dr. Ben Renfro in Pensacola Florida supports the diet. He's the closest one to us. (about an hour drive). We can't get an appointment with him until the first of October. I don't know if we want to see a doctor that is so busy..... Looking for some advise... please.... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2003 Report Share Posted August 4, 2003 That is interesting with the topamax, we haven't had any bad effects, we just aren't sure if it is helping or not, she is on 125 twice a day, I guess we don't want to take her off and find out. Depakote sprinkles also come out in my daughters stool, but her levels still stay up ther, I guess she absorbs what she needs. ??? need advise... Hi, My name is Tricia. I have a daughter named Lacey (7 years old) She started having seizures around the age of 1. At that time she was starting to try and say a few words. Mostly sounds. Her seizures progressively got worse. She's been on so many medicines. Her seizures are " under control " at this point. She takes Lamictal and Topamax. (we recently weened her off of her dilantin). It seems now she only has seizures when she has a low grade temp. We are wanting her off of her medications. We have seen how much more responsive she is when she's not " doped " up. I don't know if ket. diet is right for her. Is it a trial and error type thing? Of course, we talk to her physician when she was 2 about putting her on the diet. He was completely against it. He now has moved and we are changing nerologist. I am looking for one that specifically supports the diet. I've been told that Dr. Ben Renfro in Pensacola Florida supports the diet. He's the closest one to us. (about an hour drive). We can't get an appointment with him until the first of October. I don't know if we want to see a doctor that is so busy..... Looking for some advise... please.... Quote Link to comment Share on other sites More sharing options...
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