Hypotonia Support Group
Hypotonia is a condition of abnormally low muscle tone (the amount of tension or resistance to movement in a muscle), often involving reduced muscle strength. Hypotonia is not a specific medical disorder, but a potential manifestation of many different diseases and disorders that affect motor nerve control by the brain or muscle strength.
Hello all,
I have just joined the group for my son (1 year today) who has low muscle tone diagnosed by family pediatrician. He has been receiving physical therapy and occupational therapy for feeding for about 3 months now. We live in Lehigh Valley Pennsylvania area within driving distance th Philly and NYC. There is only one specialist where I live now and we don't have an appointment until September. Due to the significant therpay he has, we would like to try and get in with a specialist sooner to get a diagnoses and treatment plan. As the doctor puts it we are just putting band aids on a sore without knowing what is causing the low muscle tone. Baby boy has good head control, rolls, claps hands, and sits when put in that position for a few minutes. He has come this far with therapy. He gets feeding therapy because he rejected bottles around 6 months and was hunger striking until he could breast feed. He is now taking pureed foods and liquids off spoon in addition to breast feeding for nutrition.
I called CHOP (childrens hospital of philadelphia) but there is also a 6 month waiting period to see someone. Can anyone here recommend a specialist who may be able to see us sooner in PA, NJ, NYC, DE or MD? Thank you all for your help!
Just joined this support group. My son is 10 months old and has hypotonia..his main obstacle is that he keeps his mouth open all the time..he see's PT once a week through our county through some public program. They come to our home. We have great health insurance but my wife found this service. We live in SF bay area, Marin County.
Good luck, God Bless your child.