Anyone Have a Child with Hypotonia and Global Delays

Hi L.
My son is gonna be 5 in July has PDD. PDD is such a "gray" label on the autism spectrum. My son has hypertonia and OT has helped him with that. I goto a therepy center and get gets OT at school also. We live in South Hills so he attends DART and got IE services prior to special ed preschool.
Odd behaviors and "stimmming" is hard to gauge with your child since he has global delays....I'm not educated in at area. Austim spectrum disorder cover severe to the milder stuff. My son is high fuctioning......smart and getting better with OT/gymnastics/swimming/bike riding.....excercise is key for hypertonia kids.
Getting an EVAL would be a good idea but he's still young. My son got his PDD tag at 2yr 9months.
He is som smart but social backwards.
I hope this helps you.

N.

Hi,

My background is an Occupational Therapist & I can tell you it is better to have hypotonia than hypertonia. With OT & PT, you will see dramatic improvement's with your son in no time!

have they tested for angelman syndrome? i know this is not 'support' i'm sorry, just the first thing that came to mind. best of luck with the developmental doc.

C.

I am so sorry about all that you are going through. I know that the wait can seem endless when you want to get help for you child. I am sorry that I don't have any advice for what your son is going through, but I wanted to let you know that I just took my daughter to see a developmental ped at Good Shepard in Allentown. I too was on a waiting list at CHOP and St. Christophers. Good Shepard had the quickest appointment, even so, we had to wait 6 months. I was very pleased with the Doctors, therapists and staff there. Good luck to you and your son.

My now 10 year old daughter was diagnosed with global developmental delays and hypotonia when she was very young also. She now carries a PDD-NOS diagnosis. She has been through OT, seen lots of doctors, and generally it was a big pain for me, but now, she's in a regular ed classroom. She doesn't really receive much learning support, though she does have an IEP. SHe's a bit backward socially, and still has a few issues, but as far as the world is concerned, she's just a typical, beautiful little girl.
Hang in there, do whatever it is that they say might help, and you'll be on your way!
HTH!
B.

Hi L.,
My daughter has hypotonia as well. She has been in physical therapy for a year now and I think it has helped a lot, however she had her Early Invention yearly check this week and she scored at 15 months on her gross motor skills- a little disheartening because she is 32 months old. She has no speech or other learning delays, and after seeing a slew of specialists she has the tenative diagnosis of a congential myopathy. One thing that I have learned is that most kids with the diagnosis of "hypotonia" never get a definitive diagnosis, which can be really frustrating as a mother. We're only a year further down the path then you, so I don't have any specific reassurance, but I can tell you that Josie is in a preschool environment in the mornings and is doing pretty good. Now that she is a little older and is finally walking (at 22 months!) she doesn't really stand out as different like she used to. She's not as scared of other kids and holds her own even though she doesn't run and jump. I don't know if it helps any, but I know what you're going through, anyway.

L....my son is now five and still have problems with low tone, but he has compensated for a lot of it over the years. He has global developmental delays of about 18 months, so he is now developmentally about 3 1/2 on nearly every front. It has been a long road, but he is really doing well overall. The problems with the low tone only show up here and there...we now have him working with a private OT largely to address core strength and severe global sensory issues. For what it's worth...once they addressed and started treating my son's sensory issues, many of his other areas of concerns showed rapid improvement. To give you some context, when we had Riley evaluated by EI at 18 months, he did not walk, he was completely non-verbal, he ate only sparingly (his weight was 16 lbs. at that time and yes, he was full-term and over 7 lbs. at birth), and NEVER napped - at night if he slept 6 hours we were having a great night! Now he runs and climbs and talks non-stop. He only eats a select few foods, but what he does eat, he eats well and he sleeps 10-12 hours at night.

Feel free to contact me privately if I can be of help. We've been down this road - it's a long road, and a lot of the baby steps (no pun intended) take longer and require a lot more work, but they mean so much when they are achieved. We really learned to appreciate how hard he was working for everything! It took a long time for me to put a lot of that in context - and there are still days that are hard...but he has come so far and is doing so well. If you had told us when he was two that he would be where he is now, we would have looked at you like you had two heads! :) The developmental ped should be very helpful - that is one avenue we have not taken with Riley, but it's still on the table - CHOP is an amazing facility - we are lucky to live in an area where so many incredible medical centers are within pretty easy driving distance. Good luck!!!

Hi, I know I am a few days late, but I have a 9 year old boy who was born with many medical problems, poor/low muscle tone included. He started received EI when he was one, and once he turned 3 he went to a preschool setting.(they do not allow therapists to come to the house once they turn 3). He has delayed fine and gross motor skills too. The therapists can do wonderful things, and he would be alot worse off if it wasn't for them. He is in a regular 3rd grade class, but he has an enabler for self help and toileting, etc. He is pretty bright, and so far is doing well with his grades(he has gotten 2nd honors twice this year). My advice would be to follow through with the EI and make sure you voice your opinion about what you think is best as he grows. My experience is a good one, and most everyone involved has the best interest of the child in mind. It is possible he can live a pretty good life.
M. P.

Hi L.,
I completely understand what you are going through. My son is now 8, was diagnosed with developmental delay when he was about 9 months old. We still have not found any reason for it. He does go to regular school just in a special class. When he was 3, he was diagnosed as having autistic traits as well. He still does not talk but the hypotonia has resolved itself. Everyone who knows my son loves him to death. We have dealt with the developmental ped at CHOP and at St Chris, both are wonderful. There is a wonderful therapy program through Pegasus Riding Academy which helped with the hypotonia. For more information, theyir phone number is ###-###-####. Good luck with everything!
C.