Guest guest Posted April 24, 2005 Report Share Posted April 24, 2005 Does it mean anything when they have a hard time getting any? I know several times they haven't been able to get any in Sophie's legs and I just thought they were doing it wrong (great denial, huh?). I'm just wondering now if I should have been concerned. Does Sophie have any tone issues? lost muscle tone as his disease progressed...hypotonia....and Bliss (my kids are all adoption with spec needs but not related) and True have high tone...spacicity/hypertonia. All three have delayed reflexes. Do any of her clinic notes from visits say the above words or hyporeflexive? I wouldn't let it freak you out or anything but its just another symptom you should know about. Is she getting PT? Maybe an eval would be good, just to see? I know you are new to the Mito game (and for any new people to spec needs world)...get copies of every report! Its a pain, I know. I don't get copies of general peds visits or drs where there really aren't any issues, but all other specialists, I do. Definitely get copies of labs and any tests she has. It will amaze you what they are used to just skimming over and not remember its a Mito kid and that EVERYTHING counts! As far as organization is concerned, I have done it several ways, but the most effective has been using a different notebook for every kid. I have most recent evals and testing first. I take it with me to every appointment and every IFSP/IEP meeting...that way they can't put me off by not having papers they say they need. Its been a godsend! deb...mom to four great kids and wife to one amazing guy!www.LifeofLoveProject.orgwww.debwells.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2005 Report Share Posted April 24, 2005 Have any of your kids had any vision/eye problems? Sophie has started crawling into things, bumping things on her right side and her right eye will move from side to side or look crossed when the left eye seems ok. This is just one more thing that's making me a nervous wreck about what's happening with her right now Yes its called esotropia...the turning is. It can be patched or even operated on if needed. The side to side is probably nystagmus which could be mito-related... had that and I know a bunch of kids do. I don't think there is anything they can do for it b/c its another one of the autonomic problems. Do you have a pediatric opthomologist...ours is very helpful! These problems aren't huge so I wouldn't get too worried just yet. The OT should be helping with the bumping into things, so tell her about it during her next session... deb...mom to four great kids and wife to one amazing guy!www.LifeofLoveProject.orgwww.debwells.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2005 Report Share Posted April 24, 2005 Sophie has had hypotonia since birth. She also gets weekly PT, OT and ST. We were very fortunate that she started recieving her therapies when she was about 3 months old. As a newborn her reflexes were are always very brisk. It has been recently in the peds office and at the genetics office that they had trouble getting her reflexes. They just ask if neuro gets them and I say yes. But we only see neuro every four months or so. I can't agree more about getting copies of everything. I've gotten copies of all of her records. As you said the labs are the most important. I've pointed out abnormal levels that the docs have overlooked. Have any of your kids had any vision/eye problems? Sophie has started crawling into things, bumping things on her right side and her right eye will move from side to side or look crossed when the left eye seems ok. This is just one more thing that's making me a nervous wreck about what's happening with her right now. Meagan, Mom to Sophia (11 months) www.caringbridge.org/ky/sophiesong__________________________________________________ Quote Link to comment Share on other sites More sharing options...
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