Guest guest Posted January 14, 2005 Report Share Posted January 14, 2005 You do have to be concerned about the rash in the beginning. But once you get to theraputic level there are no worries. Just make sure you go very slowly in introducing the drug. For the first year we were seizure free. We had a couple seizures but realized the lamictal levels were low and increased the dosage. We were then seizure free again. We are back to having seizures but they are very mild then what he typically has. He just gets really stiff and they last about 10-30 seconds. The sleep thing was the most interesting bit of info I found out when I met the neuro. Our neuro sees a lot of unique cases and see's other kids with mito. She said sleep is a big issue with the drug and believes it really should be listed as a side effect. I hope it works out for you and you get some control. Geri-Anne-- - In Mito , " " <mitomommie@a...> wrote: > > hi, i just took jason( 10yr old son) to see dr. amy goldstein ,his > neuro here in the pittsburgh area & she finally decided that > lamictal was the only safe thing to try after years of seizures. as > many as 15 a day!! she told me that the main side effect could be a > rash! he has bad enough sleeping habits as it is , which i agree, > makes the seizures more frequent. i was going to start the med. tomm > ( sat 14th) ,so i appreicate yer' post & will let yins' know how he > reacts also. thanks again..~ go steelers~ > > > > Kim I wanted you to know that we are having some problems with > Wy's > > lamictal. He has started to have seizures even though he is at > the > > maximum dosage he can have. They are not grandmals like he > > typically has, which is good. They are staying more centralized, > > but he is having a couple a week. Baseline for him is 1 seizure > > every 6 months. I was at the neuro last week and she also told me > > that a common side affect of lamictal is that kids will not sleep > at > > night. Probably 2 nights a month, maybe more, Wyatt will not > > sleep. I never knew why. Well now I do. The negative to that is > a > > lack of sleep can cause seizures. I just wanted you to know > before > > you gave lamictal a try. Boy things can change in a month. I > swear > > it was a couple of weeks ago that I told you he had had no > seizures > > since being put on lamictal last year. > > > > Geri-Anne and Wyatt, Complex I > > > > P.S.- Hope you are enjoying all of the snow. It is suppose to be - > 20 > > tomorrow without windchill. The high is suppose to be -5. Isn't > > winter great !!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2005 Report Share Posted January 21, 2005 thanks again for your info.,unfortunately jason had thrown up a few times last sat. eve., so i didn't give him the med. i was hoping to do it this w/e of the 22nd, but he has been home /w/ a nasty sinus infection & difficulty breathing due to only breathing thru' his nose,so i don't know when. maybe just start out the 1st w/e of feb. he will be going to his grammy & pappy's house the w/e of the 29th so i can recover from out pt procedure, & she will not be willing to give a new med.i'd want to watch over him anyways. will let yins' know. jul~ > > > > > > Kim I wanted you to know that we are having some problems with > > Wy's > > > lamictal. He has started to have seizures even though he is at > > the > > > maximum dosage he can have. They are not grandmals like he > > > typically has, which is good. They are staying more centralized, > > > but he is having a couple a week. Baseline for him is 1 seizure > > > every 6 months. I was at the neuro last week and she also told > me > > > that a common side affect of lamictal is that kids will not sleep > > at > > > night. Probably 2 nights a month, maybe more, Wyatt will not > > > sleep. I never knew why. Well now I do. The negative to that > is > > a > > > lack of sleep can cause seizures. I just wanted you to know > > before > > > you gave lamictal a try. Boy things can change in a month. I > > swear > > > it was a couple of weeks ago that I told you he had had no > > seizures > > > since being put on lamictal last year. > > > > > > Geri-Anne and Wyatt, Complex I > > > > > > P.S.- Hope you are enjoying all of the snow. It is suppose to > be - > > 20 > > > tomorrow without windchill. The high is suppose to be -5. Isn't > > > winter great !!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2005 Report Share Posted January 21, 2005 thanks again for your info.,unfortunately jason had thrown up a few times last sat. eve., so i didn't give him the med. i was hoping to do it this w/e of the 22nd, but he has been home /w/ a nasty sinus infection & difficulty breathing due to only breathing thru' his nose,so i don't know when. maybe just start out the 1st w/e of feb. he will be going to his grammy & pappy's house the w/e of the 29th so i can recover from out pt procedure, & she will not be willing to give a new med.i'd want to watch over him anyways. will let yins' know. jul~ > > > > > > Kim I wanted you to know that we are having some problems with > > Wy's > > > lamictal. He has started to have seizures even though he is at > > the > > > maximum dosage he can have. They are not grandmals like he > > > typically has, which is good. They are staying more centralized, > > > but he is having a couple a week. Baseline for him is 1 seizure > > > every 6 months. I was at the neuro last week and she also told > me > > > that a common side affect of lamictal is that kids will not sleep > > at > > > night. Probably 2 nights a month, maybe more, Wyatt will not > > > sleep. I never knew why. Well now I do. The negative to that > is > > a > > > lack of sleep can cause seizures. I just wanted you to know > > before > > > you gave lamictal a try. Boy things can change in a month. I > > swear > > > it was a couple of weeks ago that I told you he had had no > > seizures > > > since being put on lamictal last year. > > > > > > Geri-Anne and Wyatt, Complex I > > > > > > P.S.- Hope you are enjoying all of the snow. It is suppose to > be - > > 20 > > > tomorrow without windchill. The high is suppose to be -5. Isn't > > > winter great !!! Quote Link to comment Share on other sites More sharing options...
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