tag:blogger.com,1999:blog-31461418.post7251684797672811385..comments2023-09-07T20:24:11.937-04:00Comments on Ryn Tale's Book of Days:: Migraines and Ceiling TracksKathrynhttp://www.blogger.com/profile/16388107764837538301noreply@blogger.comBlogger6125tag:blogger.com,1999:blog-31461418.post-51931670842180191192010-06-03T10:14:43.373-04:002010-06-03T10:14:43.373-04:00A true Catch-22. :(
BusyLizzyMom's comments ...A true Catch-22. :(<br /><br />BusyLizzyMom's comments made me think of the diagnosis 'restless leg syndrome' - usually experienced by persons without developmental diagnosis. Not an expert in RLS but sometimes if you ask a physician in faux-ignorance, the MD will think outside of the box, too. Or, give information that he would not otherwise. BarbaraAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-31461418.post-8036301927579949792010-06-02T13:47:56.448-04:002010-06-02T13:47:56.448-04:00Hi everyone - thanks for the supportive words!! Bu...Hi everyone - thanks for the supportive words!! Busy Lizzy's mom - ugh - that is hard going!!! We can't put Ellie's afo's on because she got a pressure sore from the serial casting. i wish we could! When they are not rubbing some bony bit of her ankle - I know they help the clonus a great deal! <br /><br />Weight bearing will certainly help too - but right now her ortho doc says no weight bearing (because Ellie requires AFO's to do that and it's still too risky). Such a bummer.Kathrynhttps://www.blogger.com/profile/16388107764837538301noreply@blogger.comtag:blogger.com,1999:blog-31461418.post-23606545840450168812010-05-31T21:45:25.879-04:002010-05-31T21:45:25.879-04:00You are the second person today that has said thei...You are the second person today that has said their child was not sleeping due to clonus (one of the families I saw at work). Elizabeth does not have clonus but twitches to the point she could bounce out of bed, most often the only way to deal with it is almost lying on her to keep her still. Elizabeth has her twitchy nights after a busy day. Have you tried putting her AFO's on to stop the clonus on her feet, they should stop it for a bit.<br />Sounds like you have some big plans for your house, giving her a room on the main floor is a good idea in so many ways.BusyLizzyMomhttps://www.blogger.com/profile/09116803603107554804noreply@blogger.comtag:blogger.com,1999:blog-31461418.post-29533475727151814202010-05-23T21:49:51.584-04:002010-05-23T21:49:51.584-04:00So sorry to read about her recent migraine and the...So sorry to read about her recent migraine and the stress on you, too. Glad your PT has given you some means of mitigating the clonus, but like holding her for hours at a time, it is not a complete solution. Weight-bearing can reduce clonus, too. Wondering if a lumbar support to your back would help-? <br /><br />Sounds like a very good house plan. <br />BarbaraAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-31461418.post-83169741670714982982010-05-20T10:21:19.300-04:002010-05-20T10:21:19.300-04:00Sounds like a great plan, make sure to buy some fu...Sounds like a great plan, make sure to buy some furniture that allows you to have ellie sleep on you but supports your back in a better fashion that whatever you are using now. Maybe consult with an orthapedic person for info on what to get. I had a reclining arm chair with wings and wide supportive arms that let me put the twins off of me a little while they slept on me, but this was before they got to 20 pounds each.... Beautiful Pic of Ellie in her baseball helmet on May 14! She looks like a serious MVP ;^)Rickhttps://www.blogger.com/profile/13152796373979585738noreply@blogger.comtag:blogger.com,1999:blog-31461418.post-23838367855241325342010-05-16T19:33:20.077-04:002010-05-16T19:33:20.077-04:00Oh poor baby girl! What a rough night. I think the...Oh poor baby girl! What a rough night. I think the house idea sounds great! It sounds like it sure has given you a fit of worry...I hate that feeling.Candacehttps://www.blogger.com/profile/04201448627487443779noreply@blogger.com