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Posts by hdirks

I know it's heartbreaking to first get that news. My daughter is now 3 and has profound loss in both ears and was bilaterally implanted with cochlear implants at 14 months. She has had them for 2 years now and is just now starting to mimick the very basic speech sounds and "babble" like you would expect from a hearing infant. But she also has a lot of other complex issues and brain abnormalities which is why she is still so far behind even with her cochlear implants. If...
My daughter has had nystagmus since she was born. Hers has become less frequent but you still notice it, particularly when she doesn't feel well or is tired or over stimulated. She does have neurological issues as well as other abnormal eye problems, but ironically her vision is perfect. We have never tried to "treat" hers and she sees multiple specialists and neuros and they have never even mentioned a treatment for it. It is just something that seems to happen with her...
Thanks for the input, I guess I will just keep trying to keep them apart when I can and will talk to her therapists about maybe adding some play therapy. Question, is that involved with pt or ot or anything? Or does it have to be its own separate therapy? Thanks!
My daughter with special needs is 3 now and I also have a 16 month old daughter. My 3 year old is so mean to her little sister and I have tried literally everything to make it stop and I don't know what else to do. My 16 month old just started walking a month ago because everytime she stood up before her sister would push her down and then get right in her face and laugh at her. She still does it all the time. She will follow her around the house and shove her over and...
your story actually sounds very simliar to ours! my dd has global hypotonia but the part that switched was that her left leg now has increased tone especially the upper thigh. She does have the *unofficial* diagnosis of hypotonic cp but her physiatrist didn't want to put it on paper because it still wouldn't explain the rest of her symptoms and is not a primary diagnosis. (she is still undiagnosed) She has had SMOs for the last 2 years. Her ankles are *very* hypotonic,...
Just bumping this up in case anyone who might have a similar experience missed it.......
My daugther is still undiagnosed but has a lot of things going on. She has always been hypotonic since birth and she is checked every 6 months by her physiatrist on her tone. Well 6 months ago she was still hypotonic but at this last appointment she has switched to having increased tone, mostly in her legs and her left leg is worse. He says he doesn't think it's bad enough yet to need meds or botox but we might be heading that direction if it gets worse. She just turned...
Saw the neuro today. Seizures still suspected so we are going in for an inpatient EEG hopefully within the next month. He's leaning towards complex partial seizures.  So We will see I suppose. No, she does not have any history of seizures, but as an infant she did have spasmus nutans, and she also has a lot of brain abnormalities from birth.
EEG came back normal! but still no answers. Follow up with neuro on may 4th.
well we have an eeg on thursday......looks like it might be seizures. We will see I guess
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