Hypotonia | Imamother

amother

Fri, Sep 30 2022, 2:43 pm

My baby has hypotonia. We went to neurologist and he is ordering additional testing. I would love to hear any positive outcomes with hypotonia. We have pt and ot so far and he's doing progress bh but very slowly. Any information would be appreciated. Thanks.

amother

Tulip

Fri, Sep 30 2022, 2:57 pm

tweety1 wrote:

Is that general low muscle tone or more severe?

Hypotonia means low muscle tone.

OP it could go along with something else or your baby could just be floppy. It's great that you are being so proactive.

amother

Fri, Sep 30 2022, 2:58 pm

I don't know much yet. Hopefully it will be benign. But low tone everywhere. He is delayed gross motor etc.

amother

Fri, Sep 30 2022, 3:01 pm

Obviously he wants MRI and genetic testing done. It's doing lots of testing to rule out that there's something else really going on that's causing it. Anyone personally dealt with this And can offer some encouragement.

amother

Fri, Sep 30 2022, 3:06 pm

tweety1 wrote:

Is that general low muscle tone or more severe?

Did you or do you know of someone who dealt with this? Thanks

amother

Freesia

Fri, Sep 30 2022, 3:48 pm

amother OP wrote:

I dealt with this, It took a bunch of months but we did end up getting a genetic diagnosis. With a lot of therapy my daughter slowly learned how to do everything. She started walking a little before she turned 3. She still struggles with her gross and fine motor skills but we learnt how to appreciate every small milestone. It is very hard and the unknown is even harder!

amother

Mayflower

Fri, Sep 30 2022, 3:50 pm

Op youre doing great keep pushing for evals
My baby has hypotonia shes not meeting all her milestones

Have a comprehensive speech eval done to see facial hypotonia and its effect on your babys feeding and swallowing etc (im a speech therapist)

tweety1

Fri, Sep 30 2022, 4:13 pm

My 15 year old was like that. He had every single therapy available. We caught it later on at around 11 months. He's a regular kid now (almost). He can't be rushed. He needs to do everything sloooow paced. Other than that you would never know that he was this severely delayed child in every possible area.

amother

Daisy

Fri, Sep 30 2022, 4:19 pm

Its very very likely to be benign, but there are certain genetic or neurological conditions that can present as hypotonia so it makes sense for the doctor to rule it out.
My daughter had hypotonia and it took her forever to walk (she had early intervention) but today shes a totally normal teenager BH!

amother

Fri, Sep 30 2022, 4:31 pm

Thank you all so much any information is appreciated. He's 8 months now. We started pt at almost 7 months. He's getting pt in a center twice a week and ot twice I week through early intervention. Took forever to get someone to take the case through ei. I'm going to try pushing for more therapy from early intervention.

amother

Fri, Sep 30 2022, 4:33 pm

tweety1 wrote:

thanks for sharing! Was it through early intervention. I live in Lakewood if anyone knows any info on getting more help for him besides Kessler and early intervention.

amother

Fri, Sep 30 2022, 4:36 pm

amother Freesia wrote:

thanks for responding yes the unknown is so hard!! Googling is not very helpful at all just makes it seem so scary. Do you mind sharing the name of her diagnosis?

amother

Fri, Sep 30 2022, 4:38 pm

Is there any organization support groups that can help? Chaim medical maybe...

amother

Daisy

Fri, Sep 30 2022, 4:41 pm

amother OP wrote:

thanks for responding yes the unknown is so hard!! Googling is not very helpful at all just makes it seem so scary. Do you mind sharing the name of her diagnosis?

I know a hypotonic baby who ended up having Kleefstra syndrome, but that's really extremely rare

amother

Sage

Fri, Sep 30 2022, 4:47 pm

Both my kids had hypotonia and no underlying issues. BH they got PT, OT, and speech and are just fine.

tweety1

Fri, Sep 30 2022, 5:02 pm

amother OP wrote:

thanks for sharing! Was it through early intervention. I live in Lakewood if anyone knows any info on getting more help for him besides Kessler and early intervention.

Yes. He had EI. But alot! In those years they were pretty generous. I had therapists most days of the week. He started walking at around 16 months. (But so did 2 of my other kids). We had him evaluated when at 10 months old he wasn't rolling over yet. He was my happiest easiest baby.