Hypotonia and therapy..HELP!

L.,
This might be a bit lengthy, so I apologize.....I have a son who was diagnosed with hypotonia early on around the age of 3 months. You are doing everything you can. Please feel encouraged. It sounds like you are involved in the infants and toddlers early intervention program in your area which is GREAT! If you can afford it, I would do private O.T. and P.T. Insurance will cover some portion of it. If you have medicaid I know they will also cover it. Since you are located in Pittsburgh I would encourage you to take the 3.5 hr long drive to Kennedy Krieger Institute in Baltimore, MD. We see an AMAZINGLY WONDERFUL Developmentalist there. He is the best physician I have ever encountered and that is saying a lot considering I have worked in the medical field for over 15 years. His name is Dr. Alexander Hoon.###-###-####) You will probably have to wait awhile to see him but trust me it is well worth the visit. He will spend over an hour with you to answer ALL of your questions and concerns. As for my son, we received therapy 3x a week plus private therapy on top of that. We were actually doing therapy 5 days a week and like you we were incorporated everything the therapists taught us in his daily activities. It seemed like every waking moment was spent doing therapy with our son. To help him crawl we would try and show him by watching us also it would take two of us but one of us would hold him under his belly and the other would alternate his arms and legs. We would always have something very interesting in front of him so that he was motivated to try. He also would cry hysterically when placed on his belly and during his therapies. Our son didn't crawl until he was 14.5 months old and he didn't walk until 2 weeks before his second birthday. Like your daughter our son has not been linked to any genetic disorders thus far but we continue to go through testing because the doctors appear to be convinced this is genetic due to all of his anomolies. I don't see the anomolies but they do. :( In fact we are going in a few weeks for another genetic test. As long as you are trying to incorporate all the therapists are shhowing you and you are being the best advocate possibly for your daughter then you are doing everything you can.
Feel free to email me with any questions you have. I have talked to a lot of other moms on here that have had similar problems and they are all very kind. I hope I have helped you. Also, one more thing....our doctor's weren't sure our son was ever going to walk and although he is slower than most kids he walks, runs, jumps, kicks etc..... :) Okay one more thing, sorry. :) but when she does begin to stand for a little big longer at a time and if you have the resources we bought our son the indoor foldable trampoline by GALT. It has a handle bar to hold onto. It helped our son soooooooooooooooooo much! He still loves it and he is 3.5 y.o.a. now. Plus our 1 year old loves it too! :)

Not to this extent. I would push up the appointment with the neurologist, and if you are not seeing a private OT and PT (if these are early intervention-state provided services) I would get additional private therapy, even though your ECI services sound good.

You also might consider a developmental pediatrician, they can be found at children's hospitals. They will do a full work up and bring in all the specialits and write up one report.

M.

Hi, L.,

Do look into private therapies -- insurance should pay and it will take some of the pressure off of you as you try to follow through on your own 24/7. My son didn't have PT until he was about 15 mo. and some of the exercises seemed torturous. With me seemingly endlessly trying to put interesting objects ahead of him (or above him to get him to pull up) and helping to manipulate his little legs, he did finally crawl a little at 17 mo. It seemed to happen all of a sudden, as if all the exercises had finally built up enough tone. Maybe that's how it goes. I never thought he would walk either but finally did around 19 mo. when we moved into my mother's house and he was suddenly motivated to explore all her shiny interesting stuff. Now that he's 5 1/2 it all seems like a distant memory. He's made great strides and just barely qualifies for OT in Kindergarten this fall. He's still behind his peers in physical ability but not glaringly so -- he can write and use scissors pretty well, for example, runs, pedals a bike with training wheels. Unbelievable when I remember how he was as an infant and toddler.

Hang in there. Get all the help you can and trust that one day all your hard work for your daughter will pay off. You just never know exactly when that's going to be.

I don't have a kid with hypertonia, but would is yours exposed to other kids who are doing the things you want yours to be doing? I know with my son (who is developing typically, so I don't know if it is analogous) he often isn't motivated to try stuff until he sees other kids doing it. If she's not in a playgroup or daycare or something like that, it might be worth giving that a try.