15 month old not weightbearing, so worried :(

leamaz12

Hi guys, i havent been on here very much since I've had Emily, but used to go on here all the time when I was pregnant. I have an adorable little 15 month old daughter. We are very worried about her. She can't bear weight on her legs at all, so is nowhere near pulling up, walking, etc. She doesn't crawl, but she does scoot around on her bum since a little over a year old. We took her to physio and they said she has low average muscle tone. She hates being on her tummy. She can't sit up when she is lying down, but once shes up she can sit and scoot. She can roll, but doesn't do it much. She is incredibly happy and social and wonderful. She's also not gaining weight that great. We have trouble with her eating and she weighs only 18 pounds. We saw a neurologist 4 weeks ago and he thought it might be sma or some other muscle disease. She had blood work 2.5 weeks ago for the sma test and it will take 4-6 weeks to get results. We are beyond devastated and worried. I feel like I am in a nightmare. Just wondering if anyone else has any problems with motor delays or is going through anything similar.

RissKay

First of all, I'm sorry you're going through this!

Secondly, are yall in therapy? It can be so reassuring to just have the therapists there to talk to and learn from, no matter what they're there for (speech, physical, cognitive, etc)

Knottie1442268460

Contact your local early intervention program. They're usually free.

rklinge0

Well technically they can be free. The physical therapist bills the insurance. And I live in ky, if you make too much you have to pay a monthly fee.

SarahFoley725

Yes, definitely look into getting her into ECI like pp said, it can really help. Your insurance provider should be able to give you a better idea of what if anything that care will cost you.

srvarela19

I hope that you have obtained the test results you were awaiting.  Just as an FYI, my daughter has a condition known as Prader Willi Syndrome and one of the symptoms is very low muscle tone and low weight gain during the infant stage.  As others stated physical therapy is very important.  Good luck!

xabena

Hi, my child has hypotonia (low muscle tone) and she's five months old and receiving physical therapy through early intervention. She's doing great and now can roll over and lift her head. She also has a poor appetite. I read somewhere that children with low muscle tone don't eat much because they don't burn calories. But I would contact early intervention if I were you. Initially I was told I had to pay but once I stopped working I contacted the agency and now I don't have to pay. I live in New Jersey, it might be different in your state.

Erinka

My daughter was in the same place as yours. She didn't crawl until 13 months. We got connected with a birth-3 early intervention org and they evaluated her at 12 months and started providing physical therapy once a week at her daycare. Also there is a lot of parent ed so we can support the therapy. Now my daughter is 18 months and using the walking toys... not yet standing independently and a little ways away from walking on her own ... but making great progress. Ask your pediatrician for a referral for PT. We have never paid--our state (WA), local school district and insurance cover everything. Wish your family well. I know it's not easy.