Guest guest Posted May 15, 2011 Report Share Posted May 15, 2011 Terry, Puberty throws a huge monkey wrench into the works. Body chemistry is changing in huge ways via the endocrine system, and all meds probably need to be reviewed very carefully. My son Pete had been on a long-acting form of ritalin (metadate) for two or three years as well as risperdal and clonidine at the time he went through a Jekyl and Hyde thing- you could see it in his eyes- and he became very aggressive and destructive and wild. Then he kind of came out of it- until another incident would have us tiptoeing around him in fear of what he'd do next. I started re-reading all the side effects of his meds, and metadate had a warning that said " tell your doctor if you start feeling suicidal thoughts " !!!!! You can bet I called our pediatrician ASAP and we took him off the metadate. The episodes stopped. For a " postive ID " that it was the metadate, after he'd been off of it for a few weeks, we gave him ONE small dose of ritalin and within two hours he went into the Jekyl and Hyde thing. I felt like at last we knew for sure that was the culprit. Another thing we always check first thing behaviors start to deteriorate is his thyroid level. Since he's been on synthroid for hypothyroidism (started in puberty, at age 13) he has had it adjusted every few years as he's grown. I am so sorry you are going through this. I've experienced the very thing you describe- that being fearful of my son- on a few occasions. We've been able to get things turned around (meds review/tweaking, behavior plans, including social stories, strategies, etc., lots of physical activity and focus on communication all working together to help change things) but it's a constant juggle to keep the balance. Lately he's been pushing my buttons again, but I think some of the issues this time are behavioral. However, constipation does affect his behaviors some also, and we are checking thyroid again too. I'm with Margaret in that it sounds like might be having hallucinations, and he can't sort out what's real and what's not. If you don't have the two books I mentioned in my last post, ( the Mental Wellness and the Guide to Good Health), they are also for teens with Down syndrome. They cover a lot of good info about meds, and what kinds of things to consider when your child's behavior changes. Best of all, you can go tho their Facebook page here: http://www.facebook.com/pages/Adult-Down-Syndrome-Clinic/228542248575 (hope this link works) and post questions. There are discussions ongoing, and Dr. Chicoine monitors the information very carefully. Even though they don't see people outside of Illinois, they are working around the country with groups who are establishing their own Adult SD clinics. Prayers for a quick resolution for this latest challenge. Beth (20 y/o Pete's Mum) > > Margaret, > I never thought of hallucinations but it does seem like it now that you mention it. He is on valproic acid (depakene) and trileptal. But his doses hadn't been changed in years until after the episode last weekend. He doesn't take anything else. But the way he looks at me does look like he's seeing something else. > Do you think he could develop these after 7 years on a medicine? And if it is the meds it's probably not good that we raised both of them now. He is also going through puberty now. > > > Terry > > > > > > > > > > > Terry > > > > > > <<I'm so embarrassed to admit that I'm actually afraid > of my sweet innocent son ( who weighs as much as me now).>> > > Hi, Everyone....Terry....What med is he on for the seizures? It's > hallucinations........severe, terrifying ones. When Gareth was like that the > second time around, I , too, couldn't get near him. I was a robot and was > going to kill him. Are you sure there isn't a new med or supplement that > you're missing? G's occurred when the doc added that Lyrica, to the Dilantin, > for the seizures that he ended up not having. The first time, was with > Prednisone, but he never attacked then...... he would run and scream in fear. > > 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 May 15, 2011 Report Share Posted May 15, 2011 Thanks so much for the info Beth. I had my family over today of all days but I will be looking into it tonight. Terry Terry > > > > > > <<I'm so embarrassed to admit that I'm actually afraid > of my sweet innocent son ( who weighs as much as me now).>> > > Hi, Everyone....Terry....What med is he on for the seizures? It's > hallucinations........severe, terrifying ones. When Gareth was like that the > second time around, I , too, couldn't get near him. I was a robot and was > going to kill him. Are you sure there isn't a new med or supplement that > you're missing? G's occurred when the doc added that Lyrica, to the Dilantin, > for the seizures that he ended up not having. The first time, was with > Prednisone, but he never attacked then...... he would run and scream in fear. > > 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 May 15, 2011 Report Share Posted May 15, 2011 <<I'm really wondering if it's because of the different generic brand of valproic acid they made us switch to when Teva stopped manufacturing it a couple of months ago.>> Terry ~~~ I know that the drug companies insist that the generic is as good as the brand name, but Gareth can't do the generic Risperdal. They also tell you that if you start on generic synchronize, which Gareth did, that you shouldn't go back and forth to the brand name. Something is amiss with the drugs (brand vs generic) but the drug companies and insurance industry sure as heck won't let on with that!!! Prayers for a restful night, Margaret Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2011 Report Share Posted June 28, 2011 Use peanut butter to get the glue (or someone's gum) out of hair. It really works! Kris > > Thanks Margaret. I do remember the video eeg glue was horrible to get out. It smelled like airplane glue and took days to come out. We had that done twice when he was younger and first started having seizures. He may have to have another one soon, but so far the higher dosage of meds seem to be working. I wonder if they use the same glue for the sleep study. Maybe I better do a little hair trimming tomorrow. Wish he would let me buzz it but that's not an option. > Terry > > > > > > > > > > > Terry > > > > > > Hi, Everyone....Terry....Gareth had his first one done at age 15. I made > a big deal out of it by being silly and wish I had a camera for pictures. > His second one was easier 'cuz he remembered what was going to happen. I > would strongly recommend that hair be as short as possible.......that stuff > is a pain in the butt to get out!!! Then again, maybe it was the seizure > goop that was so bad to get out......I don't remember!!! Gareth got very > little sleep that night because the alarm kept going off since his O2 levels > dropped below 85% once he got into a deep sleep. He hasn't ever > snored.....just wakes up gasping for air because he stops breathing when sleeping. > > Best of luck and take the camera or video recorder!!! > > Take care, Everyone. > Margaret > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2011 Report Share Posted June 28, 2011 Great idea! I've used it on clothes for gum but never tried it in hair. Thanks. Terry Terry > > > > > > Hi, Everyone....Terry....Gareth had his first one done at age 15. I made > a big deal out of it by being silly and wish I had a camera for pictures. > His second one was easier 'cuz he remembered what was going to happen. I > would strongly recommend that hair be as short as possible.......that stuff > is a pain in the butt to get out!!! Then again, maybe it was the seizure > goop that was so bad to get out......I don't remember!!! Gareth got very > little sleep that night because the alarm kept going off since his O2 levels > dropped below 85% once he got into a deep sleep. He hasn't ever > snored.....just wakes up gasping for air because he stops breathing when sleeping. > > Best of luck and take the camera or video recorder!!! > > Take care, Everyone. > Margaret > > Quote Link to comment Share on other sites More sharing options...
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