Hi my grand daughter is 4 months old and just diagnosed with floppy Baby syndrome while is a general term. More tests are being done to pin point a better diagnosis. You are not alone. all our family are very scared. She seems mentally sound. she can babble,track with her eyes, reconizes us etc., and uses her arms alittle but she has not moved her legs. She to is staring P.T.soon.
If you would like to keep in touch let me know and I will send you my e mail address. and we can support each other thur this. Dont give up hope.
Let me know if you want to talk.........:-)

My daughter is not floopy she has hypotonia that affects mainly her lower torso. she has severe laxity.low muscle tone... I have ben told with with therapy it gets better, good luck

Our daughter was like a blanket just flat on the floor...in the NICU she barely moved it was like looking at a doll and we were terrified...but she has been in PT for about a 11 months now and is doing great...shes almost one and crawling and sitting. Her diagnosis went from sever Hypotonia to slight. Theres hope dont give up but you just have to remember that you have to keep doing the exercises even when you think there done...we stopped one of Emmas and the next month we had to start again...

I know it is hard now. I have Hypotonia, my mom was told this when I was 3 months old. Mom said that it was like hold a sack of spuds. This was back in 85 and they did not know what they do now.

I was late crowling, talking, and slow to get other things. I am now 23 and look like a normal person. I am able to live an atypical life.

When I was young and in shcool looking normal was my problem. My PE teacher did not want to here anything and wanted me to do what all the other kids did. I had a doc note and we still had problems. Ok, I had a bad teacher. I could not run as I would get hurt and end up on asprin for a few days. That was my hardest time for me.

I know it is hard now. The best thing for you and your husband to look at it is. It has a name you know what you are up against. There for you know how to help him!

Hi - I know how worried you are... you are not alone.
At 5 months, my son was not holding his head up and was not doing the things that other 5 month old babies were doing. We took him in for early intervention and found out he has hypotonia (no other diagnosis so far). He started physio when he was 9 months old and now at 15 months, he is crawling, pulling up and walking holding onto one hand. He is in physio once a week and we do exersises everyday for about 1-2 hours. Have you tried the hypotonia board on i village? The moms on that board have been a great support to me.
Please don't give up hope. Your son will accomplish things, just at his own pace. I am learning to be very patient... but when my son does a new milestone, it is so wonderful. Please don't hesitate to email me. Hugs, Ryan's mama.

My daughter is 7 years old and was diagnoised with hypotonia when she was 13 mo. old. Due to the late diagnosis she didn't start walking till she was 2 years old. She is now doing great! About the only things she can't do is climb trees and swing on monkey bars. She is behind acedemicallly and I was wondering if anyone had children with hypotonia that are teenagers now and how they progressed. Oddly enough my best friends new daughter was told she had hypotonia at 4 months old. I think the best thing is starting the therpy early and sticking with it.

I don't have a teenager with hypotonia (my son is only 3) but one thing I've learned in all of my research on the topic is that many kids that are hypotonic will have problems keeping up with a fast paced curiculum in school due to fatigue. In many cases, even children who are mildly hypotonic, fatigue sooner than a non-hypotonic child over the course of a long school day. As a result, their attention seems to waver and they often lose focus on what's being taught in class which causes them to fall behind academically. Sometimes using a different chair in class can be helpful ( I've even heard of a bean bag chair being used) because it will offer more support to their muscles and they won't get tired as quickly, thereby affording them more energy to focus on school work. Don't know if this is helpful at all - perhaps you already know some of this - but just thought it was worth mentioning.

Good luck!!!

My two year old son has been going to PT, OT, and Feeding/Speech therapy for a little over a year. It was only a few months ago when the word Hypotonia was used. We have done various genetic tests and an MRI, all comming back normal. We may not have the answers, but he is making progress with therapy. Therapy is definately the best thing you can do, while searching for answers. At 15 months my son couldn't crawl, say "dada" or chew his food. Now at 27 months he is walking with a walker (still learning to steer), says "door" and "more" and sometimes "I did it", and his jaw muscles are strong enough that we are focusing on the speech and not the feeding. Keep up the therapy, it helps!! Also if you are serious about finding answers, check out John Hopkins' Center for Hypotonia (the have a great website with lots of info)....I just talked to Emily today and she referred us to a genetics doctor closer to home, but if we don't find answers there we are going to Baltimore.

I am a sixteen-year-old with hypotonia and i do agree that it is hard to sit through an entire school day without becoming tired. However, I am in all honors classes and am starting AP classes soon. I found that as long as I have enough determination, I can make it through class. I live a life that is as close to normal as possible and no one ever notices anything wrong with me other than my immediate family! therapy definitely helps because even though i don't know the cause of my hypotonia, PT, OT, speech therapy, and writing therapy all helped me be able to lead an almost normal life. If anyone has any question about things from the kid's point of view or any questions for my parents about doctors and such just let me know and good luck to everyone!