Hypotonia and No diagnosis? Opinions plz!

Ashley - posted on 12/10/2012 ( 2 moms have responded )

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Hello I am new to Circle of Moms! I always read through posts on here that talk about hypotonia. Let me share some info on my 15 month old daughter. She was diagnosed with torticollis at 3 months and had to wear a helmet to correct flattening at 5 months in which it came off at 7 months with amazing results! She was diagnosed with benign congenital hypotonia at 12 months at BCH by a neurologist and i was told she should grow out of it. She has met milestones VERY late and the quality of them ( crawling, pulling up, etc) is poor. She isnt walking or attempting it. She still falls over sometimes when sitting, falls over when crawling and has a hard time pulling other leg up when try to pull up to stand as if her leg is very heavy. She isn't saying any words besides duck and da. She also exhausts VERY easily and sometimes will just lay on the floor. She is also quite small weighing 16 pounds at 15 months of age which is a concern with her Dr and we have an appt tomorrow regarding that and I am going to bring up my concerns about the lack of gross motor development as well. Maybe the hypotonia has affected her mouth muscles as well because chewing seems difficult at times. I believe she has something more than hypotonia. I am going to request additional testing be done to determine underlying conditions of the cause of hypotonia maybe eeg, genetic testing and or MRI CT scan. If anyone could share any advice I would appreciate it as i am becoming discouraged with her progress and quality of movements.I am not happy with the lack of diagnoses but from what i read on here is common with kiddos that have hypotonia. I am sick of people saying "oh she will grow out of it" even though her PT and EI teacher are concerned as well. I hate to see her struggle so much but am proud of her for keep trying.Thank you in advance

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J - posted on 08/01/2013

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I have a 4 yr boy with hypotonia. Try a geneticist for a diagnosis if all else fails. Wether they check the box for hypotonia or not the treatment should be the same, Lots of therapy. Earlier the better. My d has been in therapy since he was about 9months and still requires speech therapy as well as some strength therapy. Once you learn the ropes of therapy you can make a huge difference yourself by working with her at home on special skills and exercises. Don't dispair, d couldn't do the things you were describing either. All major milestones were met very late as well, but they were eventually met!! Hypotonia can cause all the issues you listed including the mouth/chewing issues. D at 4 still weighs only 30lbs but that doesn't slow him down. He is very intelligent and very normal and has almost overcome all of his issues. We have held him back in school to give so he is in a class with 31/2 year olds and this has helped tremendously! I know it's hard but be patient, try to relax and work hard on therapy and she will begin to thrive at her own pace, and will overcome her delays. Hope it's reassuring that yes others have had and are experiencing the same feelings and issues and while hypotonia is scary it can be overcome.

Shelley - posted on 05/31/2013

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I found a Dr. that specializes in hypotonia and diagnosing children with the it but he is in Toronto Canada, he used to be at John Hopkins University.
Sickkids in Canada
ronald.cohn@sickkids.ca

His e-mail is listed above he specializes in genetics but studies the muscles. He founded the Hypotonia Clinic at John Hopkins.

How do you decide if public school is right or if your child should be home schooled? I am struggling with finding the right fit for my son who is 6 with central hypotonia.

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