Does Any One Have a Child Diagnoised with Hypotonia and If So What Is Being Done

Hi D. - My 8 year old was diagnosed with benign congenital hypotonia at about 8 months of age. She also had deformational plagiocephaly (flat head) and had to wear a helmet for a few months. They were testing her for CP along with craniosynostosis (early closure of the soft spots) and finally she was diagnosed with the hypotonia (which you probably know is low tone). She had lots of O/T and P/T through Birth to 3. She also had P/T through a private place that I paid for (rehab associates) and through the public school system after Birth to 3, which was I believe at age 4. Right now, you would never now she had low tone, with the exception of her cautiousness with climbing and she is still learning how to ride a two-wheeler. She also has a very slight speech impediment (we had sent her for speech therapy as well - she had low tone in her tongue when she was born). We didn't know the diagnosis until later but they had to teach her how to suck from a bottle as she was unable to get the milk she needed from me.

Your child/grandchild should maybe see a neurologist and go through those steps. Also, I highly recommend Birth to 3 if the child is within this age range. They are amazing!

Hope this information helps! Good luck . . .

It is basically low tone and the baby will need to be pretty physical in order to help it. My daughter has a more serious case of HemiParesis so her right side is tight and is opposite of low tone. She is doing great and has been able to learn to crawl, stand and play. You will need to just have more fun with your grandchild running around and playing. Enjoy them and they will always need to be physical so it is a good thing to work towards as opposed to a child that sits behind his computer or plays games on the TV all day.

My 2.5 yr old daughter was diagnosed with hypotonia at 13 months old. Since then she has been progressing beautifully with Early Intervention services. She gets PT, OT, DI, and now speech. We are also looking into getting her PT using horses.

Now she is walking, running, climbing, just not as well as kids her own age. She is a wonderful child and I feel priveledged to be her mom.

Hi D. -

My son's dx is spastic diplegia CP, not Hypotonia, but I can tell you what we are doing, so I understand the confusion! All I can say is keep asking the MD questions - and if he's not answering them satisfactorily, get someone who will. We see a pediatrician, and orthopedist, an orthotist, an ophthalmologist, and a pediatric neurologist on a regular (semi-annual) basis.

Our story: Eric was (officially) dx in July, 2007. (He was born 7 weeks early in April, 2005.) He started in Early Intervention in May 2006 with 45 minutes of PT 2x/week. This helped DRAMATICALLY - teaching him (and me) how to move and plan his movements. Last July we got him a posterior walker, and in September 2007 it all "clicked" and he uses that to get around when we are out and about. (In the house, he continues to crawl...it's easier!) He was also fitted for AFO's (ankle/foot orthotics) in August, 2007. He wears them for 8 or so hours a day, and they give him the stability he needs. In October, 2007 we began Aqua PT for 30 minutes once a week. Within 3 months, he was independently walking in the pool. After Christmas we got him forearm crutches, which he has mastered, but can't walk as fast with them as he can with the walker, so he uses the walker more than the crutches (he's also three, which doesn't help!). This spring/summer he has actually taken a few independent steps, and everyone (PT's, neurologist, orthotist) figures he'll be walking independently (with a walker or crutches) before he starts Kindergarten in 2010. He started preschool this past fall (in a "regular" classroom), and loves every minute of it!

It's not always easy...I'm a member of a couple of Yahoo! groups on Cerebral Palsy - kidpower and cerebralpalsymoms. It's nice to connect with people who are going through similar things that you are. I am fortunate in that there do not seem to be an cognitive issues with Eric...he's a happy, bright, smiling boy ALMOST all the time, who MAKES people look at him and his walker (if they don't, he tends to run them over...).

Hope this helps...Feel free to ask more questions!

Hi D.,

It sounds like you grandson will need Early Intervention (starts with evaluations to determine what kind of services he will need; physical therapy and so on). Your grandson's parent's will have a lot to learn. It is a real process and will take a while to really understand the needs of your grandson.

My son gets OT and PT at a place in Astoria in Queens.

Leaps and Bounds Pediatric Physical and Occupational Therapy

http://www.leapsandboundspeds.com/

2114 Newtown Ave.
Astoria, NY, 11102
###-###-####

My son is typically developing with delays so just gets regular OT/PT. They also use a method called TheraSuit. There is info on this method on their website and the one below.

http://www.therapies4kids.com/home.php?pid=19

My son uses the "Spider" and he loves it.

I also found this list of places that offer it (though I do not think it is comprehensive.

http://www.cerebralpalsybirthinjuryblog.com/2008/08/inten...

The owner of Leaps and Bounds (Marjena) is friendly and informative, so even if this is not a good location for you, you could call and ask questions (she had a baby a few months ago so not always there).

All the best,

C.