Hypotonia?

Baby Bouchard

Has anyone else's little one been diagnosed with Hypotonia without a reason behind it? Or are you still searching for answers. Our little guy was late with all his fine and gross motor skills, he just turned 10 months old and still struggles sometimes with rolling over on his left side, he can sit unsupported but cannot get himself in or out of sitting, he just began to bear weight on his legs (wouldn't even extend legs until last week), cannot pincher grasp, is strongly favoring his right side (both arm and leg), and has feeding issues, which have been on-going. With the help of physical therapy we have made some advancements but I'm still worried about him. We have seen two Neurologists, one who ran an EEG, EMG and they came back normal and some blood work which is abnormal (still waiting on the re-test results) and one who said, it was just benign hypotonia and doesn't want to see him until he's 14 months old. He also has had breathing issues since birth, raspy and has sleep apnea. I'm just at a loss and wondering if anyone is going through the same thing, has any ideas, etc. He just qualified for Early Steps, an intervention service in our area, on the basis of "speech", because although he babbles, he does not have distinctive cries or sounds for different things and he does not repeat vowel sounds yet.

hmp1

I was going to suggest EI. There are others on here doing EI already. Hope he responds well to it!

Baby Bouchard

Sadly, we had to pick between speech and physical therapy, they will only cover one or the other. So we pickef PT. My insurance CIGNA will not pick up therapy for 'delays' or 'hypotonia'. Sigh. We are paying for occupational therapy out of pocket, but not sure how long we can keep that up.

shannond354

Hi - yes, my oldest son has been diagnosed with gross motor delay and hypotonia. He wasn't hitting physical milestones and also had feeding issues. We've seen neurologists, physical therapists, occupational therapists, speech pathologists, a geneticist and paediatricians. I can tell you that hypotonia takes a lot of physical therapy. In my unprofessional opinion I would not be waiting for help until 14 months. You can get him going now. My O crawled at 14 months and walked just before his second birthday. You wouldn't know anything was wrong now except that he can't jump or do stairs very well. His genetic testing all came back normal. I know there are various causes to hypotonia, but I suspect our diagnosis will be benign congenital hypotonia, which is a good thing. Please pm me if you need anything or I know the special needs board has experience with hypotonia, too. Good luck!

shannond354

Bah, I wrote out a big reply and it's gone. Grr. Long story short: my oldest has been diagnosed with gross motor delay and hypotonia. Get the help you need now and advocate hard for it. It takes a lot of physical therapy, so be diligent. My O crawled at 14 months and walked just before his second birthday. You wouldn't know anything was wrong now except that he can't jump or do stairs very well. All his genetic testing came back normal, so I'm assuming our final diagnosis will be benign congenital hypotonia. Feel free to pm me or check out the special needs board - I know there are a few hypotonia moms over there. Good luck!

MeatballEsq

My LO has hypotonia. The pedi thinks it is mainly in his shoulders though. For the most part his core is fine. He was late is sitting unassisted (around 8m), but he was born 6w early too.

We get Early Intervention services through the state, which is basically PT. He didn't bear weight on his legs for a long time, now he does it all the time. He cannot get into sitting on his own and isn't pulling up yet without a little boost, but EI is definitely helping. He just started crawling too, so that is exciting.

TBH, we didn't do the eval to find out if there was a cause. Our PT through EI was not concerned and thought it was from him being a preemie and that he was progressing, so we did not get hte eval.

GL. We're here if you have more questions or need to vent!

cmuslp10

I would request the EI occupational therapist as well. Ours at work specializes in tone and works hand in hand with me (speech therapist).

heather3879

Have you seen a geneticist? Or does your PT have any thoughts?

heather3879

Have you seen a geneticist? Or does your PT have any thoughts?

Mrs.RockyM

I have no experience with hypotonia, but I have friends who have had great success with PT, Speech, and local EI programs. 

MeatballEsq

Sadly, we had to pick between speech and physical therapy, they will only cover one or the other. So we pickef PT. My insurance CIGNA will not pick up therapy for 'delays' or 'hypotonia'. Sigh. We are paying for occupational therapy out of pocket, but not sure how long we can keep that up.

Our insurance also wouldn't pay for PT for low muscle tone. Our pedi had to recode it as "prematurity" and then they paid for 3 sessions. I would definitely look into EI. I don't think they would make you choose, do they?