17 Mth Old with Hypotonia

My son had hypotonia and was late at everything. He didn't walk until he was 3. He didn't talk until he was 3. I thought we'd be going to therapy (OT, SLT, PT) until he was 40!! haha... BUT he ended all therapies about 6 months ago and now he is a crazy 6 year old! He's running all over and never shuts up!! haha You'd never look at him now and know he was so delayed. So, just remember that there is a light at the end of the tunnel and once they get it they can catch up with leaps and bounds!

Good luck and it's great you are such a support system and getting him the services he needs! Love it!! :-)

My granddaughter, now 22, had many issues as a preemie who nearly died. Today, despite being in a wheelchair and having some learning disabilities, she is a college student and very capable and happy. She got PT @ Children's Hospital in Detroit for years. Her neurologist was Dr.Michael Nigro. The school system provided services. Another parent told us to forget the numbers and the comparisons with other kids and just enjoy and encourage her as she developed at her own pace. Ironically, most of the professional predications didn't turn out to be true. The bad stuff they predicted didn't happen but, though they were sure she would walk, she cannot bear weight on her legs. She crawls well but that is only useful at home at this age. She has lots of friends and is a rock star in our book! I wish you could know her. You live in a county with many resources so you are blessed in that way as well as many others, I'm sure!

I don't have any experience with your challenge, but I just wanted to extend prayers and support your way. Stay strong - it sounds like you're being proactive and diligent in facilitating your son's care. You'll get the reward you seek!

My oldest son has Down Syndrome and therefore hypotonia. We did the PT/OT and early intervention and all that. Mine finally walked at 2 1/2 years old and his hypotonia isn't that bad. It was a long road. One thing that did help us was a book called Gross Motors Skills in Children with Down Syndrome: A Guide for Parents and Professionals (please note though this is geared towards children with Down Syndrome it very much applies to hypotonia in general) http://www.amazon.com/Gross-Motors-Skills-Children-Syndro... It nicely spelled out step by step ideas on how to get kids to reach their milestones. It sounds like you're doing everything you can and any progress however small is still progress and a step in the right direction. Hang in there!!

It sounds like you're doing everything right. I know it can be torturous though!

My daughter did not have this severe of a problem, but was about 5-6 months delayed in gross motor development. She had a period of time when she though her legs were hands and didn't want to stand on them. Once she started to sit up on her own she moved forward at a normal speed. It was never fast enough for my pedi, she wanted her to suddenly catch up to kids her age. It was irritating to say the least. I didn't want her to rush through crawling, and the rest of her skills, but to have a normal time frame to learn them. I had to switch Pedi's to stop getting lectured about it. She's had all the blood work and consult with the state intervention (she walked at 17 months) and they all determined she was normal and just had a delayed start. Frustrating!

Hang in there, the doctors are on top of it, and I'm sure they're probably being very proactive. The key is progress, like they said. I think that's why I was so upset, my child was progressing and it was never good enough for them. Your little guy will be fine, keep celebrating the little victories and be thankful for what he learns!

Best wishes!

My daughter is 13 months old, has Down Syndrome, and has had open-heart surgery. (Also, she was born with cataracts, has had 4 eye surgeries, and wears contact lenses.) We do PT twice a week, and she is severely delayed with her development. I understand your frustration: she won't even bear weight on her hands, so she can't even "prop" herself up if she could get into a sitting position. Anyway, just wanted to say I understand what you're going through...The hardest part for me is the people who look at her and can't figure out why she's still in an infant carseat (can't hold up her head.) Sometimes I tell them, but more often than not, I just let them stare...

Aww, sounds to me like he is definitely making progress, and that is the important thing! My nephew was full-term but had low muscle tone, as well as early intervention/pt in their home. He walked at I believe 19 mo. He is now a healthy, happy, and very SMART 5 yr old...just started kindergarten! Your little guy hard a rough start. I think you are doing everything possible to help...with all the right people involved. Keep your chin up, and keep us posted. He'll get there. :)

My son is almost 4 and also has hypotonia. We had an MRI done when he was 8 months old because there seemed to be no specific reason for it. It turns out that he has "diminished white matter" making it difficult for motor impulses to be transmitted from the brain to the brain stem. So his motor skills were very delayed. The official diagnosis is "Mild Hypotonic Cerebral Palsy". He had early intervention PT/OT through the school district from about 8 months until he was 3. He sat up about 11 months, and finally crawled about 15 months and walked around 20 months. At almost 4 now, he isn't the most graceful, but he does everything he needs to. He runs and jumps and throws. Compared to other 4 year olds he isn't as active and you can tell a difference in their ability, but it isn't detrimental at all. The neurologist says that he will do everything he is supposed to, but playing sports may be a little difficult as he may not be terribly coordinated. Oh well.

I will say that it helped a lot finding out what was causing the slow development and low tone issues so we didn't have to wonder. He also has an atrial septal defect, or a hole in the upper chamber of his heart that will need to be surgically closed at some point soon, as well as a few other "soft markers" that could be an indication of a "syndrome" of some sort, but after extensive genetic testing, we have been unable to determine any known syndromes. He is very intelligent and happy and interactive so I am not worried that he will continue to have a healthy, normal life.

As long as your neurologist isn't worried and he is making progress and you are getting the therapy he needs, I would relax and just take things as they come and just enjoy him. My son learned all his letters and numbers and had really good fine motor skills because he wasn't so busy running all over creation and we had time and patience to sit and read and play and do more quiet, academic pursuits. Use the time that you have with him sitting relatively still to just enjoy spending time reading and playing together. It is an advantage that many other mom's don't get with their boys!