Guest guest Posted February 5, 2007 Report Share Posted February 5, 2007 Dear All My son 7y.o is not only CHARGE unfortunately,he also has Autism.We are seeing a psychtrist on wed 7th feb to evaluate his meds. Our first concern is his sleeping meds which is 40mg of vallergan (antihistamine ) and 10mg of Melatonin. He still struggles to go to sleep. Sometimes he can do an all nighter on us which drives us too the brink of madness because you can't leave him alone. He has a cochlear implant and we take it off at night so the poor boy is stone deaf and visually compromised more so in the dark. We are @ our wits end regarding his poor sleep patterns. Last night I gave him vallium to go to sleep. He eventually capitulated at midnight with much distress and tears on both of our parts. Bless him, he has such an active mind. Any suggestions are appreciated. Talking of active, well redefines the term. During the day he finds it impossible to be still. His little body is always gyrating and his hands are flapping and twitching. His legs are kicking. It is draining on us and it is therefore impossible to teach him. When there is a window of stillness we capitalise and try teach him a thing or two. Unfortunately when he is challenged he tends to become very excitable and his preservative behaviour goes into overdrive. I sometimes feel he has some movement disorder. Can anyone relate to the above and what do you suggest. He has tried low dose of Epilm which worked for a short while and when we increase it, he went hysterical. We have subsequently stopped Epilm. I feel the only way to bring some restoration into 's heart and mind and soul is through the right medication. The key to finding the appropriate med is the challenge.Any suggestions? And what does the list think of the concept of movement disorder. Something neurological to do with neurotransmitters,perhaps. Perhaps a beta blocker. This is becoming very scary as he is like a candle in the wind. Your comments and support are welcome.Thank you in anticipation. ,Father of (7) and Gwynne mom and 23 weeks pregnant with a girl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2007 Report Share Posted February 5, 2007 Have you tried Abilify? My son has been on this for a few years and it works wonders for him. He is on 4 meds for ADHD and anxeity. He takes ritalin, klonapin, zoloft, and abilify. The abilify really seems to help him with him aggression and helps him focus. Something to ask your son's psychiatrist. a mom to 9yr CHARGEr and Quintin 6yr seizure prone Goldberg wrote: Dear All My son 7y.o is not only CHARGE unfortunately,he also has Autism.We are seeing a psychtrist on wed 7th feb to evaluate his meds. Our first concern is his sleeping meds which is 40mg of vallergan (antihistamine ) and 10mg of Melatonin. He still struggles to go to sleep. Sometimes he can do an all nighter on us which drives us too the brink of madness because you can't leave him alone. He has a cochlear implant and we take it off at night so the poor boy is stone deaf and visually compromised more so in the dark. We are @ our wits end regarding his poor sleep patterns. Last night I gave him vallium to go to sleep. He eventually capitulated at midnight with much distress and tears on both of our parts. Bless him, he has such an active mind. Any suggestions are appreciated. Talking of active, well redefines the term. During the day he finds it impossible to be still. His little body is always gyrating and his hands are flapping and twitching. His legs are kicking. It is draining on us and it is therefore impossible to teach him. When there is a window of stillness we capitalise and try teach him a thing or two. Unfortunately when he is challenged he tends to become very excitable and his preservative behaviour goes into overdrive. I sometimes feel he has some movement disorder. Can anyone relate to the above and what do you suggest. He has tried low dose of Epilm which worked for a short while and when we increase it, he went hysterical. We have subsequently stopped Epilm. I feel the only way to bring some restoration into 's heart and mind and soul is through the right medication. The key to finding the appropriate med is the challenge.Any suggestions? And what does the list think of the concept of movement disorder. Something neurological to do with neurotransmitters,perhaps. Perhaps a beta blocker. This is becoming very scary as he is like a candle in the wind. Your comments and support are welcome.Thank you in anticipation. ,Father of (7) and Gwynne mom and 23 weeks pregnant with a girl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2007 Report Share Posted February 5, 2007 Hi , We don't do any meds for behaviors so I can't help there. With the going to sleep though, we use Clonidine and it gets Peyton to sleep w/in 30 minutes(we just upped to 2 mg from 1mg recently due to him taking a little longer w/ it and he had been on it for over 2 years!). The only problem is it doesn't last all nite. But I feel like at least it gets him on a regular routine of going to sleep at the same time. Our son too would stay up till all hours of the nite. Very hard.Since we upped his dose, when he does awaken in the nite, he goes back to sleep after a short time so that's better. Before, he would wake at 3 or 4:00 and stay up. Hope this helps. It's a relatively safe drug w/ little side effects(none for us). We do understand your son being in constant motion, our son is as well. Continually moving(even when he's lyingdown, which he prefers to a lot). He does the flapping/kicking. I think this is all sensory related. Best of luck to you w/ this. Corrie Young mom to Peyton CHARGE 10, Cy 7, 4 and Tate CHARGE 5 mos. > > Dear All > > My son 7y.o is not only CHARGE unfortunately,he also has Autism.Weare seeing a psychtrist on wed 7th feb to evaluate his meds. Our first > concern is his sleeping meds which is 40mg of vallergan (antihistamine ) and > 10mg of Melatonin. He still struggles to go to sleep. Sometimes he can do an > all nighter on us which drives us too the brink of madness because you can't > leave him alone. He has a cochlear implant and we take it off at night so > the poor boy is stone deaf and visually compromised more so in the dark. We > are @ our wits end regarding his poor sleep patterns. Last night I gave him > vallium to go to sleep. He eventually capitulated at midnight with much > distress and tears on both of our parts. Bless him, he has such an active > mind. Any suggestions are appreciated. > > Talking of active, well redefines the term. During the day he finds > it impossible to be still. His little body is always gyrating and his hands > are flapping and twitching. His legs are kicking. It is draining on us and > it is therefore impossible to teach him. When there is a window of stillness > we capitalise and try teach him a thing or two. Unfortunately when he is > challenged he tends to become very excitable and his preservative behaviour > goes into overdrive. I sometimes feel he has some movement disorder. Can > anyone relate to the above and what do you suggest. He has tried low dose of > Epilm which worked for a short while and when we increase it, he went > hysterical. We have subsequently stopped Epilm. I feel the only way to bring > some restoration into 's heart and mind and soul is through the right > medication. The key to finding the appropriate med is the challenge.Anysuggestions? And what does the list think of the concept of movement > disorder. Something neurological to do with neurotransmitters,perhaps. > Perhaps a beta blocker. This is becoming very scary as he is like a candle > in the wind. > Your comments and support are welcome.Thank you in anticipation. > > ,Father of (7) and Gwynne mom and 23 weeks pregnant with a > girl > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2007 Report Share Posted February 6, 2007 , Proprioceptive awareness (sense of self in relation to the world) is gained through information from smell, vision, hearing, sensation in the joints, the balance system, and even touch and movement. Many of those variables are impacted in CHARGE. When a person does not have a strong proprioceptive sense, they often have sleep problems and are known to be in constant movment. I wonder if this is what is going on with . Kim Certified HANDLE Screener and Intern Mom to Dylan 10 CHaRGE, Kayla 16, Tyler 18 and wife to Roy who makes all things possible in our lives. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2007 Report Share Posted February 6, 2007 Thank you to all of you who replied to my post. It was very interesting and most helpful. We're going to 's psychiatrist tomorrow and fingers crossed she is opened to all your suggestions, in particular Clonidine and Abilify. Some questions about the above mention meds. Corrie does Peyton only use Clonidine or do you augment it with anything else?I am very encouraged to try this med on .Also how are you dealing with your son's behaviour? We use ABA which definitely has a positive effect on 's behaviour and overall development.Nevertheless his persistent movements is extremely worrying. And a ,I researched Abilify on the net and it seems to be an antipsychotic drug primarily used for schizophrenia. I am wondering how you managed to convince your doc to prescribe it for and I'm therefore wondering how J's doc will prescribe it for him? You know how reluctant doctors can be to prescribe a med that they haven't used before or is somewhat controversial.What us parents need is for a doctor to bat for us wholeheartedly.I guess they are like gold-dust. I'll keep you all posted about tomorrows appointment with the psychiatrist.Thanks again and take care. Goldberg, Father to (7) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2007 Report Share Posted February 7, 2007 Hi , We do not do anything else w/ the clonidine. We tried Ambein a couple of weeks ago and it didn't get Peyton to sleep right away. It took as long as four hours for it work(we realized that crushing it to get it throught his g-button was an issue). Anyway, it DID get him to stay asleep all night(something the clonidine doesn't always do) so we thought do a combination. However, his doctor said we couldn't do that. Soo, that's where we ended up upping his dose of Clonidine. As I said earlier, when he does wake up now, at least he goes back to sleep w/ the hour(before he was up for the night partying). Containment is defininitely the key, I agree w/ Kim. Peyton is contained to his room which he mostly choses to stay in his bed. Best of Luck!! Corrie > > Thank you to all of you who replied to my post. It was very interesting > and > most helpful. We're going to 's psychiatrist tomorrow and fingers > crossed she is opened to all your suggestions, in particular Clonidine and > Abilify. > Some questions about the above mention meds. Corrie does Peyton only use > Clonidine or do you augment it with anything else?I am very encouraged to > try this med on .Also how are you dealing with your son's behaviour? > We > use ABA which definitely has a positive effect on 's behaviour and > overall development.Nevertheless his persistent movements is extremely > worrying. > And a ,I researched Abilify on the net and it seems to be an > antipsychotic drug primarily used for schizophrenia. I am wondering how > you > managed to convince your doc to prescribe it for and I'm therefore > wondering how J's doc will prescribe it for him? You know how reluctant > doctors can be to prescribe a med that they haven't used before or is > somewhat controversial.What us parents need is for a doctor to bat for us > wholeheartedly.I guess they are like gold-dust. > > I'll keep you all posted about tomorrows appointment with the > psychiatrist.Thanks again and take care. > > Goldberg, Father to (7) > > > Quote Link to comment Share on other sites More sharing options...
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