My name is Diana Cline and my son's name is Schaefer. He will be 3 on September 19. We live in Columbus Ohio.
My story: In a nutshell: almost normal pregnancy but had Polyhyrdromious at 28 weeks (too much amniotic fliud). I had had an amniocentesis at 14 weeks with no problems found. Sure did worry about that one until he was born perfect! I did not begin to worry about him until at about 5 months when he could not turn over, either way, as he was supposed too. Later, he could sit if we propped him but could not get into position on his own. Kept telling pediatrician that I was "worried"...... he blew it off of course. My son finally crawed at 16 months, up on all fours, and walked independently at 20 months. He is now going to be 3 years old and we see no signs of any problems other than STRENGTH issues. He can do all the things that he is supposed to do, except walk up stairs, along, altenating feet and hop on one foot. I, personally, don't think that this is a big deal the in the scheme of things!
The only testing that we have done is an MRI at 18 months which showed no abnormallies. He has continued to progress with PT/OT and a little speech. These therapies ended about 6 months ago.
I WOULD GLADLY BE WILLING TO TALK TO ANYONE ABOUT ANYTHING. ..... YOU CAN CONTACT ME IN CARE OF MARTY.
I want to say hello to everyone who visits this site. Because of my first story I have had many e-mails (forwared by Marty) from parents asking many things but most of all, they ask for hope. I've got the story for you. We are so blessed and lucky to have a wonderful son named Schaefer. Our story goes like this........
They told us that my son had Global Hypotonia when he was one year old. It showed up mostly in his arms and legs and just a little in the trunk. We did PT/OT for about a year after that. At that point, he wasn't officially behind but the quality of how he did things was certainly not the same as other kids. He is smart as a whip. Once he started talking (just a tiny late) he has never shut up! One he was finally able to walk (at about 19 months) he went at a run. He hasn't quit yet.
Recently, he has been complaining about his knees hurting every once in a while. His pediatrician had them XRayed and saw no problem so I took Schaefer back to the Physical Medicine Clinic where he was seen as a baby. The doctor couldn't tell us why his knees hurt but she suggested that we now see a geneticist for a possible new diagnosis. Well we got an "official" diagnosis of Ehlers-Danlos Syndrome. It is genetic although neither my husband, myself or anyone in our family has low tone or even loose joints (another symptom). Anyway, it really means nothing. We do nothing different so i'm not going to go into the details of EDS. They didn't have a test for his type, it was just a clinical evaluation based upon what I told them and how his muscles feel when they squeeze them! Oh well. My son will live to a ripe old age.
I have to tell you now that we were not even sure if he would walk. I remember his 1st birthday and crying after everyone left the party. The only thing he could do was sit unsupported. He couldn't stand, didn't pull to stand, didn't crawl, etc. I was beginning to wonder if we would have to install ramps, etc. I wondered if he was mentally impaired. I wondered if he would ever be able to really hug me. Gosh, I sure cried alot at that time. But...... he steadily improved and quite honestly, fairly quickly. It seems all we had to do was get him to try and hold his body weight and get him to practice and then one day he could do it. And it kept getting better!
Now he is almost 4 1/2 years old. People who don't know his history would NEVER, and I mean NEVER know that we wondered if he would walk, talk, etc. He does anything and everything. He attend preschool 3 mornings a week and will enter the pre-k program this fall. His teachers are amazed at his vocabulary. They see no difference in his gross motor or fine motor skills as compared to the other children in his class.
Now, as for those of us who know what to look for........ He can, but doesn't like to walk up/down stairs without holding on. He can, but doesn't like to jump from heights. Initially, he cannot make his muscles move the same as other kids. For example, the first time we hung him from a bar so that he held on with both hands he immediately fell off. He could not grasp and maintain holding his weight. After about a month and a half, he can hold on and even swing. As for the first time we asked him to hang on and then lift his legs.... well you guessed it. He couldn't make his legs go up, he couldn't even hardly bend his knees. Once again, after practice he can do these things but they are not effortless and I don't believe he will ever be able to hold on for as long or pull his knees up faster or higher than he already does. We think this has something to do with the strength that he can produce. We put him on a balance beam (very low to the floor) and he couldn't maintain his balance and fell off. Now he can traverse it and it progressing to a higher one. Is this a big deal at this point? Nope. Does it matter in the long run. We don't think so.
My son can and does gymnastics every week. He will and can soon play soccer and baseball. We don't know how well he will do because of his temperament, not his physical limitations. I am going to try and follow-up on his knee pain but other than that our life is great and I hope that My Story #2 lifts the spirits of those out there who are new to the hypotonia realm. I guess it really depends on the underlying cause of the hypotonia and the severity.
Once again, please send me e-mail via Marty if you want any particulars.
Diana & Schaefer Cline