Guest guest Posted March 4, 2006 Report Share Posted March 4, 2006 Tricia, Our PT has developed a " bed envelope " for some of our kids which has the same effect as a weighted blanket in terms of the pressure,but cheaper and easier to move. I would like to forward your email to her and she can tell you how she makes it. Is that acceptable to you? We have had some good luck with several kids--they like it and sleep better because of the pressure. (Is it the sleep cure? no, but has had some good success.) pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2006 Report Share Posted March 4, 2006 I second Pam on this suggestion. I assume this is the same sheet " thing " Perkins put together for . Think of it as a snuggle " thing. " that wraps around the sleeper. It's very low tech. As a matter of fact, 's is in our basement; given this reminder, I'll wash it tomorrow. Martha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2006 Report Share Posted March 4, 2006 I second Pam on this suggestion. I assume this is the same sheet " thing " Perkins put together for . Think of it as a snuggle " thing. " that wraps around the sleeper. It's very low tech. As a matter of fact, 's is in our basement; given this reminder, I'll wash it tomorrow. Martha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2006 Report Share Posted March 4, 2006 first used a weighted blanket while at Perkins. Pam, I think Betsy gave me the information about where to buy one for home. Does that make sense? Can you jump in here? Sorry, I just no longer remember where I ordered it. Do not expect a magic bullet with the blanket but definitely hang in there. I believe that took to it right away at Perkins but basically ignored it for ages here. When she first left Perkins for her house in Fulton, she used it daily. Now, at home, she is finally asking for it. They are not cheap, but ours has been well worth the price. Martha If Pam doesn't " jump in " I'll get the ordering information for you. Just remind me!. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2006 Report Share Posted March 4, 2006 first used a weighted blanket while at Perkins. Pam, I think Betsy gave me the information about where to buy one for home. Does that make sense? Can you jump in here? Sorry, I just no longer remember where I ordered it. Do not expect a magic bullet with the blanket but definitely hang in there. I believe that took to it right away at Perkins but basically ignored it for ages here. When she first left Perkins for her house in Fulton, she used it daily. Now, at home, she is finally asking for it. They are not cheap, but ours has been well worth the price. Martha If Pam doesn't " jump in " I'll get the ordering information for you. Just remind me!. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2006 Report Share Posted March 4, 2006 Tricia, after I sent my email, I reread your post. often uses her blanket when she needs to calm herself and really likes it when she's having a " break. " I've seen her put it in her bed; for her, however, right now it seems to be something to give comfort while awake. Just thought you should know. Martha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2006 Report Share Posted March 4, 2006 Hi Tricia, We haven't had experience but I've read about others on the list in past years using weighted vests and things like that with success. They are supposed to be very helpful. Weir Visit the Weir family online: http://ca.geocities.com/weirfamilyrogers Home: lisaweir@... Work: lisa.weir@... Phone: Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2006 Report Share Posted March 4, 2006 Hi Tricia, We haven't had experience but I've read about others on the list in past years using weighted vests and things like that with success. They are supposed to be very helpful. Weir Visit the Weir family online: http://ca.geocities.com/weirfamilyrogers Home: lisaweir@... Work: lisa.weir@... Phone: Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2006 Report Share Posted March 4, 2006 Hi Tricia, We haven't had experience but I've read about others on the list in past years using weighted vests and things like that with success. They are supposed to be very helpful. Weir Visit the Weir family online: http://ca.geocities.com/weirfamilyrogers Home: lisaweir@... Work: lisa.weir@... Phone: Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2006 Report Share Posted March 4, 2006 Yes, Martha it is what I am talking about. And.... with that I will be in touch with you off list, tomorrow. xo pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2006 Report Share Posted March 4, 2006 Yes, Martha it is what I am talking about. And.... with that I will be in touch with you off list, tomorrow. xo pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2006 Report Share Posted March 4, 2006 Martha, I can get it from ann, who I have already forwarded the message re: blanket and sheet/snuggle " thingy " . pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2006 Report Share Posted March 4, 2006 I use melatonin on my . I like it. I think it helps him wind down and get to where he can get to sleep. I give him 2-3 miligrams depending on how wound up he is. If he is too out of control my husband will give him one to help calm him down. He is usually asleep within about 30 minutes after he gets it otherwise it takes him hours to fall asleep. His neurobehavior doc approves of its use. a mom to 8yr CHARGEr & Quintin seizure prone --- Tricia Gillbanks wrote: > HI Pam > > I met an OT from Perkins??? @ the Miami conference. > She did explain to me > about making a lycra sleeve for Cameron's bed with 4 > way stretch lycra. > > I couldnt find 4 way stretch lycra and what I made > was a bit tacky! > Any info would be appreciated, and pass this on to > ANYONE. > > Once asleep CAmeron is fine .. its just getting him > to that state! > He has to have his blankets tucked in so tight its > like being in a straight > jacket! If they come loose, he's out of bed, tucking > them back in. Then he > has to lie on his back and shimmy back down without > untcking them again. > This can occur several times before he finally drops > off! > > Does anyone use melatonin to help their kids get off > to sleep. > > MAny thanks > Tricia - Mum to Cameron 13yrs > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2006 Report Share Posted March 5, 2006 Recently I was around a woman who could feel " electricity " on regular sheets, but if she slept with flannel sheets it did not bother her. Every time she moved in the regular sheets she could " feel it " . Also the heavier the covers, and the tighter they are tucked in - the less likely the sheets were to move and cause this sensation. Who knows if that is happening with any of our kids, but they are very sensitive. Kim > HI Pam > > I met an OT from Perkins??? @ the Miami conference. She did explain to me > about making a lycra sleeve for Cameron's bed with 4 way stretch lycra. > > I couldnt find 4 way stretch lycra and what I made was a bit tacky! > Any info would be appreciated, and pass this on to ANYONE. > > Once asleep CAmeron is fine .. its just getting him to that state! > He has to have his blankets tucked in so tight its like being in a straight > jacket! If they come loose, he's out of bed, tucking them back in. Then he > has to lie on his back and shimmy back down without untcking them again. > This can occur several times before he finally drops off! > > Does anyone use melatonin to help their kids get off to sleep. > > MAny thanks > Tricia - Mum to Cameron 13yrs > > > > CHARGE SYNDROME LISTSERV PHOTO PAGE: > http://www.imagestation.com/album/?id=2117043995 > > Membership of this email support groups does not constitute membership in the > CHARGE Syndrome Foundation or CHARGE Syndrome Canada. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter), > please contact marion@... or visit > the web site at http://www.chargesyndrome.org > (CHARGE Syndrome Canada - http://www.chargesyndrome.ca) > > 8th International > CHARGE Syndrome Conference, July, 2007. Information will be available at > www.chargesyndrome.org or by calling 1-. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2006 Report Share Posted March 5, 2006 Recently I was around a woman who could feel " electricity " on regular sheets, but if she slept with flannel sheets it did not bother her. Every time she moved in the regular sheets she could " feel it " . Also the heavier the covers, and the tighter they are tucked in - the less likely the sheets were to move and cause this sensation. Who knows if that is happening with any of our kids, but they are very sensitive. Kim > HI Pam > > I met an OT from Perkins??? @ the Miami conference. She did explain to me > about making a lycra sleeve for Cameron's bed with 4 way stretch lycra. > > I couldnt find 4 way stretch lycra and what I made was a bit tacky! > Any info would be appreciated, and pass this on to ANYONE. > > Once asleep CAmeron is fine .. its just getting him to that state! > He has to have his blankets tucked in so tight its like being in a straight > jacket! If they come loose, he's out of bed, tucking them back in. Then he > has to lie on his back and shimmy back down without untcking them again. > This can occur several times before he finally drops off! > > Does anyone use melatonin to help their kids get off to sleep. > > MAny thanks > Tricia - Mum to Cameron 13yrs > > > > CHARGE SYNDROME LISTSERV PHOTO PAGE: > http://www.imagestation.com/album/?id=2117043995 > > Membership of this email support groups does not constitute membership in the > CHARGE Syndrome Foundation or CHARGE Syndrome Canada. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter), > please contact marion@... or visit > the web site at http://www.chargesyndrome.org > (CHARGE Syndrome Canada - http://www.chargesyndrome.ca) > > 8th International > CHARGE Syndrome Conference, July, 2007. Information will be available at > www.chargesyndrome.org or by calling 1-. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2006 Report Share Posted March 5, 2006 Recently I was around a woman who could feel " electricity " on regular sheets, but if she slept with flannel sheets it did not bother her. Every time she moved in the regular sheets she could " feel it " . Also the heavier the covers, and the tighter they are tucked in - the less likely the sheets were to move and cause this sensation. Who knows if that is happening with any of our kids, but they are very sensitive. Kim > HI Pam > > I met an OT from Perkins??? @ the Miami conference. She did explain to me > about making a lycra sleeve for Cameron's bed with 4 way stretch lycra. > > I couldnt find 4 way stretch lycra and what I made was a bit tacky! > Any info would be appreciated, and pass this on to ANYONE. > > Once asleep CAmeron is fine .. its just getting him to that state! > He has to have his blankets tucked in so tight its like being in a straight > jacket! If they come loose, he's out of bed, tucking them back in. Then he > has to lie on his back and shimmy back down without untcking them again. > This can occur several times before he finally drops off! > > Does anyone use melatonin to help their kids get off to sleep. > > MAny thanks > Tricia - Mum to Cameron 13yrs > > > > CHARGE SYNDROME LISTSERV PHOTO PAGE: > http://www.imagestation.com/album/?id=2117043995 > > Membership of this email support groups does not constitute membership in the > CHARGE Syndrome Foundation or CHARGE Syndrome Canada. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter), > please contact marion@... or visit > the web site at http://www.chargesyndrome.org > (CHARGE Syndrome Canada - http://www.chargesyndrome.ca) > > 8th International > CHARGE Syndrome Conference, July, 2007. Information will be available at > www.chargesyndrome.org or by calling 1-. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2006 Report Share Posted March 7, 2006 Tricia, YES! I forgot that you probably met Ann and/or LIz. She has been out sick, but I have sent her your email. I am also sharing it with the OT for her feedback. The two of them together might have a thought for you. And....I don't know if you have read any of Martha's posts about and melatonin. She is a good resource (she might have answered this question for you already). We also have other kids on melatonin and for some it has worked really well; others, not so much. HOpefully, your pediatrician can help. pam Quote Link to comment Share on other sites More sharing options...
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