Guest guest Posted October 23, 2004 Report Share Posted October 23, 2004 Hello all, I'm a little behind on posting, life has been hectic and I haven't made it on-line for a few days. What a difference a few days makes in this group! If you snooze you loose here!! ha ha I have a lot of catching up to do! Anyways.... I also wonder about Adrielle's condition and the role the meds have played. " A " was diagnosed with global developmental delays at 18 mos., Epilepsy at 2 and Autism at 2.5. Her delays were very evident which began the search. Her initial seizures were absence only. They were only lasting 3 secs, but she was having several every minute. We started with Topamax which did nothing for her. We moved on to klonopin and ?? (can't think of which one came next here), and somewhere around that time discovered complex partial seizures. Adrielle then had a grand mal and they tried keppra, which she had major problems with! She had pretty much no gross motor function and had hallucenations. They took her off keppra immediately and moved us to Dilantin as a temporary drug until they could figure out what to do next. Then the drop seizures began. She had a lot of them! They then moved us on to zonegran and lamictal. With each drug we went on a honeymoon only to have it end with something worse than where we started before. We have been on the lamictal and zonegran longer than anything else, and keep seeing the same pattern. seizures = increase meds = honeymoon = increase in seizures, etc. We now have a diagnosis of LGS (since March 04) Many times I have complained that my child seems to be getting worse with each new drug and increase and I have been told the following repeatedly: " Epilesy is a fluctuating illness. " " It can be frustrating, but " E " isn't a condition that is predicable or exact. " " All patients experience ups and downs and many changes that can not always be controlled, and these changes should be expected. " While I understand there is truth to what they are saying, I wonder if enough research has been done to find out what role the meds are really playing?? I watched " First Do No Harm " and this question is actually brought into the light during the movie. The Dr. states that there is no scientific evidence on the effects good/bad of these meds. No double blind studies etc. I realize this movie is not real current, but are there any studies out there now?? I didn't have time to read all the posts on this subject so if you've already covered this I apologize! I did read that some of you noticed cognitive and speech effects from the meds. With " A's " delays and Autism, being clear on what has been the meds and what is coming from other issues has been tough. We are very anxious to find out what will happen after we begin the diet and start to remove the meds!!! I'll let you know!! , Mom to Princess Adrielle, starting the diet on 10/31/04 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2004 Report Share Posted October 24, 2004 It's very difficult to do studies on children. Hard to get consent, plus the ethical problems. Most new drugs are only tested on adults as a result. They can be used on children, but there are usually no studies. Bill byhisgrace08 wrote: > > Hello all, > > I'm a little behind on posting, life has been hectic and I haven't > made it on-line for a few days. What a difference a few days makes > in this group! If you snooze you loose here!! ha ha I have a lot > of catching up to do! > > Anyways.... > > I also wonder about Adrielle's condition and the role the meds have > played. " A " was diagnosed with global developmental delays at 18 > mos., Epilepsy at 2 and Autism at 2.5. Her delays were very evident > which began the search. Her initial seizures were absence only. > They were only lasting 3 secs, but she was having several every > minute. We started with Topamax which did nothing for her. We > moved on to klonopin and ?? (can't think of which one came next > here), and somewhere around that time discovered complex partial > seizures. Adrielle then had a grand mal and they tried keppra, > which she had major problems with! She had pretty much no gross > motor function and had hallucenations. They took her off keppra > immediately and moved us to Dilantin as a temporary drug until they > could figure out what to do next. Then the drop seizures began. > She had a lot of them! They then moved us on to zonegran and > lamictal. With each drug we went on a honeymoon only to have it end > with something worse than where we started before. We have been on > the lamictal and zonegran longer than anything else, and keep seeing > the same pattern. seizures = increase meds = honeymoon = increase > in seizures, etc. We now have a diagnosis of LGS (since March 04) > Many times I have complained that my child seems to be getting worse > with each new drug and increase and I have been told the following > repeatedly: " Epilesy is a fluctuating illness. " " It can be > frustrating, but " E " isn't a condition that is predicable or > exact. " " All patients experience ups and downs and many changes > that can not always be controlled, and these changes should be > expected. " > > While I understand there is truth to what they are saying, I wonder > if enough research has been done to find out what role the meds are > really playing?? I watched " First Do No Harm " and this question is > actually brought into the light during the movie. The Dr. states > that there is no scientific evidence on the effects good/bad of > these meds. No double blind studies etc. I realize this movie is > not real current, but are there any studies out there now?? I > didn't have time to read all the posts on this subject so if you've > already covered this I apologize! > > I did read that some of you noticed cognitive and speech effects > from the meds. With " A's " delays and Autism, being clear on what > has been the meds and what is coming from other issues has been > tough. We are very anxious to find out what will happen after we > begin the diet and start to remove the meds!!! I'll let you know!! > > > , Mom to Princess Adrielle, starting the diet on 10/31/04 > > > > > > Quote Link to comment Share on other sites More sharing options...
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