Guest guest Posted July 27, 2010 Report Share Posted July 27, 2010 <<Has anyone else had late onset seizure disorders? >> Hi, Everyone........my son, Gareth, was dx'd with absence seizures and put on meds at age 20. For 1 1/2 yrs, we switched from med to med trying to avoid the horrible side affects from the seizure meds. He was finally admitted for a week long EEG study and they found that he wasn't having epileptic seizures but pseudo seizures....non-electrical. All the Epil meds in the world wasn't doing him any good......just screwing his brain up more so than it already is!!! <<He is severely ocd >> ....sounds like Gareth!!! He's on the Risperdal (1 mg/twice a day) for the anger/aggression and Lexapro for the OCD (20 mg daily). He's 5'4 " and 180#'s. It's the Risperdal that finally enabled him to talk and we could work on the behavioral issues. If the meds don't work, then you can always take him off them. Take care, Everyone. Margaret Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2010 Report Share Posted July 28, 2010 They did an EEG and I don't think the results shoed anything good or bad. He wouldn't keep the sensir on. his seizures have muscle involvements and I was told they are " generalized seizures " from his " frontal lobe " . That is what neuro said. He forgot I work in the field. My friend the RN said " oh, partial complex " . IDK why the Dr didn't use the right terms for me. They needs to stop dumbing it down for parents. We aren't dumb. We just get to sound dumb because the Dr dumbs it down. http://thekitchenexperiments.blogspot.com/ > > <<Has anyone else had late onset seizure disorders? >> > > Hi, Everyone........my son, Gareth, was dx'd with absence seizures and > put on meds at age 20. For 1 1/2 yrs, we switched from med to med trying > to avoid the horrible side affects from the seizure meds. He was finally > admitted for a week long EEG study and they found that he wasn't having > epileptic seizures but pseudo seizures....non-electrical. All the Epil meds > in the world wasn't doing him any good......just screwing his brain up more > so than it already is!!! > > <<He is severely ocd >> > > ....sounds like Gareth!!! He's on the Risperdal (1 mg/twice a > day) for the anger/aggression and Lexapro for the OCD (20 mg daily). He's > 5'4 " and 180#'s. It's the Risperdal that finally enabled him to talk and we > could work on the behavioral issues. If the meds don't work, then you can > always take him off them. > > Take care, Everyone. > Margaret > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2010 Report Share Posted October 5, 2010 I didn't see Seroquel in that mix nor did I see Trazodone. Might be worth a try. On Tue, Oct 5, 2010 at 8:07 PM, Mcdowell wrote: > > > Margaret, She has been on Prozac 2mg, Effexor 37mg, Zoloft half of the > lowest > pill I forget what that is, Lexapro lowest pill again. Celexa and Elavil. > Some > pills I cut in quarters. So we did the lowest and slowest and she was a > basket > case. She would stay up 36 hours and then collapse over and over again. > > The antipsychotics were in liquid at the smallest amounts. She would laugh > more, talk to herself more, and stare into space. Abilify made her very > stiff > and she walked up and down the stairs over and over. Wanted me to drive her > > around. Very wound tight. Risperdal made her leg jerk, face grimce, and > hand > shake. More problems and risk of permanent. Was on Tennex, Strattara, > Klonopin, > Zyprexa was the last one and the hand rubbing started after that one was > stopped > a little over a year ago. I will email you private with my info. > > ________________________________ > From: " mfroof@... <mfroof%40AOL.com> " <mfroof@...<mfroof%40AOL.com> > > > To: > Sent: Tue, October 5, 2010 6:27:30 PM > Subject: / > > << They must be painful and they seem to be multiplying>> > > Hi, Everyone.........Gareth gets them all the time and he doesn't seem > > half as bothered by them as what I am. I ask him if they hurt and he says > 'no.' They get so red, hard, ugly looking and they don't bother him. > Thank you, Mr Autism!!! As for taking care of them, doc said to be sure > every hair is dried after shower/bath so it doesn't lay, mat, and have > bacteria > grow. I use a very warm wash clothe, Betadyne, and then, Neosporin. It > may take a couple of days for them to open. On his face (zits), I use acne > creams. > > <<She has been on antidepressants and they make her manic. She gets wound > up like a top. Antipsychotics make her just lost.>> > > .....I don't mean to judge the docs, but did they start her on low > doses or go straight to what a NT person would take? Did they try various > SSRI's or stop after one or two? I feel your pain......I go through it with > > Gareth. How did the anti psychotics make her 'lost'? Was she > overmedicated and zombie like? Where do you live.....I forgot? I would love > > to call > > you and talk. E-mail me privately if you want someone to talk to. What > about > her Vit D levels? They are finding that low Vit D levels can mimic > depression. > > Take care, Everyone. > Margaret > Mom to Gareth, 22 y/o, DS/ASD/OCD > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2010 Report Share Posted October 6, 2010 Sara, yes she was on Seroquel in the beginning. She has been on more meds than I have mentioned. Too many to remember. But, no matter what meds she is always worse. Like I read yesterday, with this type of autistic onset from the antibodies, these meds are not helpful at all. This came from the Adult Down Syndrome Clinic in Chicago. This is the Clinic that wrote the book on Adults with Down Syndrome. Forget the name. Hailey is so sensitive, I can not give her simple vitamins without her winding up, the tics amplify, she stops sleeping, she can not use head and shoulders or deodorant because of her chemical sensitivities. So....lucky now she is tolerating the Synthroid this time around. Oh, no we did not try Trazodone, and without meds she is much better than on. Thanks for the suggestions though. ________________________________ To: Sent: Tue, October 5, 2010 8:16:18 PM Subject: Re: / I didn't see Seroquel in that mix nor did I see Trazodone. Might be worth a try. On Tue, Oct 5, 2010 at 8:07 PM, Mcdowell wrote: > > > Margaret, She has been on Prozac 2mg, Effexor 37mg, Zoloft half of the > lowest > pill I forget what that is, Lexapro lowest pill again. Celexa and Elavil. > Some > pills I cut in quarters. So we did the lowest and slowest and she was a > basket > case. She would stay up 36 hours and then collapse over and over again. > > The antipsychotics were in liquid at the smallest amounts. She would laugh > more, talk to herself more, and stare into space. Abilify made her very > stiff > and she walked up and down the stairs over and over. Wanted me to drive her > > around. Very wound tight. Risperdal made her leg jerk, face grimce, and > hand > shake. More problems and risk of permanent. Was on Tennex, Strattara, > Klonopin, > Zyprexa was the last one and the hand rubbing started after that one was > stopped > a little over a year ago. I will email you private with my info. > > ________________________________ > From: " mfroof@... <mfroof%40AOL.com> " <mfroof@...<mfroof%40AOL.com> > > > To: > Sent: Tue, October 5, 2010 6:27:30 PM > Subject: / > > << They must be painful and they seem to be multiplying>> > > Hi, Everyone.........Gareth gets them all the time and he doesn't seem > > half as bothered by them as what I am. I ask him if they hurt and he says > 'no.' They get so red, hard, ugly looking and they don't bother him. > Thank you, Mr Autism!!! As for taking care of them, doc said to be sure > every hair is dried after shower/bath so it doesn't lay, mat, and have > bacteria > grow. I use a very warm wash clothe, Betadyne, and then, Neosporin. It > may take a couple of days for them to open. On his face (zits), I use acne > creams. > > <<She has been on antidepressants and they make her manic. She gets wound > up like a top. Antipsychotics make her just lost.>> > > .....I don't mean to judge the docs, but did they start her on low > doses or go straight to what a NT person would take? Did they try various > SSRI's or stop after one or two? I feel your pain......I go through it with > > Gareth. How did the anti psychotics make her 'lost'? Was she > overmedicated and zombie like? Where do you live.....I forgot? I would love > > to call > > you and talk. E-mail me privately if you want someone to talk to. What > about > her Vit D levels? They are finding that low Vit D levels can mimic > depression. > > Take care, Everyone. > Margaret > Mom to Gareth, 22 y/o, DS/ASD/OCD > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2010 Report Share Posted October 9, 2010 You are right, i should not give up but i am so frustrated! It makes me wonder if she has kids at all. I think it should be mandatory that these so called doctors should have to do clinicals in the home so maybe they would know what they are talking about. Nobody knows a child like their parents. Which is why i hate when they try and talk to me like i am stupid or don't know what i am talking about. I live with this everyday!! > > From: mfroof@... <mfroof%40AOL.com> <mfroof@... <mfroof%40AOL.com> > > > Subject: / > To: > Date: Friday, October 8, 2010, 4:45 PM > > > > <<The drs. say it doesn't matter what we call it. We'll treat the > symptoms, not the dx. .........She said he has autistic symptoms and we > need to > focus on that. She even handed us a pamphlet for an autistic school and > said > this is what he needs but refuses to give dual diagnosis. >> > > Hi, Everyone.... and ....attitudes like this make me want to > scream!!! They obviously feel that *they* can address the symptoms but > have NO freakin clue what it's like dealing with a school district and > their > narrow minded policies' for therapies. I'm sorry............I've been > there and gone through it. It is just soooooooooo frustrating, in this day > and > time, and I hope you both get another psych doc whose got the backbone to > write those words on a sheet of paper....Autistic AND Down Syndrome. > > Take care, Everyone. > Margaret > Mom to Gareth, 22 y/o, DS/ASD/OCD > > Quote Link to comment Share on other sites More sharing options...
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