Recently I have been researching CMTC on my own and came across this forum. I could respond to a lot of questions but wanted to first provide one post about my condition, my experiences and hopefully that can help some of you with small children.
My Mom had the same feelings that some of you have....the first few years were hard. She said she had no idea what would happen....so much uncertainty. I was born in 1984 and my parents (both have a medical career background) could only find one other case. It was in Australia. Those first few years I saw lots and lots of specialists. I am developmentally normal but cant remember how things went the first few years in that regard. I have always been a late bloomer so it is safe to say that walking, talking etc etc....happened on the later side for me.
I do have the marbled skin and it is worse on the left side. It was very noticeable but now has worn off because Im fully grown. You get the occasional questions but not as often as when I was younger. It is most noticeable on my face. Had laser treatments when I was 4-5....they were very very traumatic. I tend to flip out if anything or anyone gets close to my face. This was 1989 so I dont remember a lot but it is my first strong memory of CMTC. The treatments worked fairly well but still it was noticeable. Got questions all the time. Mom had to talk to teachers etc. I read someone doing the same thing and my Mom did do all that.
The face rash was fairly noticeable but I was still normal looking growing up. When I was 16, I had a few more laser treatments with the new high tech laser. Honestly, the laser treatments bothered me a lot and so I stopped them this time. They did a good job but I hate having things touching my face and I want to keep some of the rash because it relates to my character. It is part of me. I was reading another post about a daughter and how she seems more interested in the treatments now. Im sure its different for a girl because of the pressure society puts on females to be attractive/pretty etc. But I want to stress to parents that they should let their kids make the decisions. When they are babies I wouldnt overdo the laser treatments. My parents kind of pushed me when I was 16 and I didnt like that.
Beyond that here are some facts about me. I'm fully grown and developmentally normal. No problems with my brain. I'm 6'2 185lbs. My left arm and leg are quite a bit smaller than the right. My left foot is smaller and the leg is 2 cm shorter. I wear orthodics to help correct. The rash is worse on the left. I get cold very easily and when it gets cold my skin turns purple. I have glacoma. Im far sighted in one eye and near sighted in the other. I tend to most of my seeing with one eye.
A few years ago I became very interested in fitness and weightlifting. I was always into sports but couldnt compete anymore around 12-14 (puberty) because my left side was so much weaker. Ive experienced tremendous muscle growth but more so on my right side. My left side has gotten stronger but has lagged behind in terms of strength and especially growth. I found a great expanation for that....
Hypotonia seems to be part of some who have CMTC. It mentions having low activity tolerance and leaning onto support because of it. Those two things I notice in me a lot. I am in decent shape but my left arm and leg get tired and lag behind the right. I stand and sit in weird ways. The entry says that....For instance, some hypotonics may experience constipation, while others have no bowel problems. I have terrible constipation problems at times.
The 1 weird thing that no one has been able to figure out is that about once a year I get, what can be described as a mini stroke- on the right side of my body. Slowly I lose feeling in the entire right side of the body. It takes 10-15 min for that to happen, and then in 30 min it slowly goes away. Obviously this is scary at times but Ive learned to deal with it. It usually precedes headaches. Talking to my mom, she said that no one thinks its related to CMTC but me and mom agree that it is.
In terms of self esteem and confidence....I really struggled with these things growing up and feel that my parents could have done a better job. I'd say I am okay now....I am definitely a very humble person.
The only advice I can give to parents dealing with CMTC is to 1) focus on building your childs self esteem/confidence and 2) if one side is affected a lot more...to reinforce your children using both hands/ both legs etc. Not as important as #1 but important based on my experience.
For those of you with very young children....from what I know....which isnt a lot (but there isnt a lot to know about CMTC)....the vast majority of those with CMTC turn out to develop normally with few or no brain issues.
In my experience CMTC has made me the person I am today. I looked different, felt different but now I am unique, independent and see everything differently. But I think it is better that way. Kids with CMTC will develop much stronger character, integrity and morals than those without it!
JRB, Seattle, WA.