My son, now 13, got the same kind of reaction from doctors. His hypotonia didn't seem to affect his mouth at all. His speech was advanced and he was beginning to read at 2 1/2. All his doctors said he would be fine so he didn't get OT or PT until he was older and then it was for about six weeks one year, another six weeks a few years later. We were told he had sensory integration dysfunction (vestibular and proprioceptive) and he needed therapy for that. Our insurance would not pay for sensory integration therapy and we could not afford it. We were told to do some of the things in the book "The Out of Sync Child Has Fun." We did what we could at home.
Later we were told the reason the primary care physicians couldn't give us referrals for PT was because my son didn't have a diagnosis, but when we tried to get a diagnosis we were told that it was very difficult to find a diagnosis for kids with mild hypotonia. He finally got a diagnosis at age 11--motor dyspraxia. We were told this was the reason he had fine motor problems and handwriting difficulty.
But unlike some kids with dyspraxia, his balance was good and he was not clumsy unless he was very tired, his timing was good, and he could learn dances in musical theater. He had an excellent memory. He just got tired much faster than other kids. When he tried to keep up with other kids he got muscle aches. We were told they were growing pains. My son complained that when we went to doctors they gave us the same cliche advice they gave everyone else and he knew he was not like everyone else.
My son got very little physical therapy. He would go for six weeks and we would be told he didn't need it any more, just have him do the exercises at home. When he was 11 he developed scoliosis and the neurologist told us that the hypotonia did have something to do with the scoliosis. He got put in a brace that allowed very little movement and made it difficult to breathe normally. He had to wear it during all weight bearing activities from the time he got up in the morning until he went to bed. After a year in that brace his muscles that support his spine became very weak and the curve started progressing. I found out there was a nighttime only brace that might work better for his type of curve, leaving me to wonder just how hard the orthopedic surgeon was trying to help my son avoid major surgery. I asked for the nighttime brace and we got it. My son had to go physical therapy for six weeks and again we were told he just needed to continue exercises at home.
My only advice is don't listen to them if they are telling you to ignore the physical delay. If you can get her in OT and PT then do it, so you won't have to wonder years later if it would have made a difference. Learn as much as you can about hypotonia and make notes about everything, including the areas she is advanced and things she has difficulty with. I took my very detailed notes to the neurologist and he found it helpful. I think it helped him rule out some things.
My son had to have an EMG and it wasn't as bad as he thought it would be because the doctor who did it had a lot of experience with kids. Some doctors are better with kids than others.
