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CMTC

kittycat71263
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Hi My Son also has Cmtc.It is mainly on his left leg. But does have a small amount on other leg, scrotum one tiny place one back and on his eye lid! I am also trying to educate my self. My son was born large he was 10.7.4oz. He had some sort of stomach problems and the Dr said it was probably colic. But it wasn't it only happened at night.So then the said it was most likely related to the cmtc. We have also had a horrible time cutting teeth. And he still don't sleep through the night? He wakes up screaming in pain? And it goes as fast as it comes? Has any one else been through this? He is also real Bow legged is this something to worry about!!

Explore topics in this discussion:

Asthma Surgery Hemangioma GERD Allergies Hemihypertrophy Glaucoma Hernia Pain Diarrhea

15 replies

Sheri07

Nice to have you as a friend. My son is 20 mos. old and has cmtc on left arm, leg, and some on right arm and whole right leg. Also across chest and a little on the back. Do you have an official diagnosis of cmtc on your son? From what I understand, cmtc very rarely travels alone. There is usually some other disorder. We are currently in the process of having our son tested for glaucoma and heart/ chest. I wonder how your son's bones are with the bow leggedness? Just wondering.

My husband and I met in Baton Rouge. Is that close to where you live?

kittycat71263

Hi nice to meet you. Yes we had to go last year and they diagnosed him, he had to have all sorts of test. He has to go to the eye dr evey year. This has been a rough year cause from what I am told there is so many things that can go with this. And most of the Dr we see never evn heard of this. I am worried about his legs and i thing the one is slighty shorter than the other. We life in the North east corner right by the Mississippi line.

ednbec

Since your child has CMTC on his face it is important that an MRI is made to rule out hemangioma's on the brain. Our grand daughter has CMTC markings on her face as well as across her head, she does have the hemangioma's. Other's who have had children with marks on the head and face have also found issues.

It is hard at times to make Doctors understand this is so much more than a birthmark issue. There are several syndromes that can be with CMTC and these should be ruled out by a geneticist. They are trained in locating the markers for these.

The glaucoma screening for your child should be no more than 6 months apart, as this is an issue with CMTC. Has your child be seen by a orthopedic Doctor to rule out any overgrowth syndromes in the bones. Hemihypertrophy often accompanies CMTC which can cause overgrowth in a complete limb or bone structure such as hip or pelvis. This could also account for your sons shorter leg. Isolated Hemihypertrophy can affect one area, Complex Hemi can affect limbs, organs, eyes and brain.

Not to scare you but all these need checked and either ruled out or into the equation. Each CMTC case is unique with what it presents with.

Hope some of this helps,
Grandpa Ed

Ellayna age 4 - Proteus, CMTC, Cross Complex Hemi, Chiari

kittycat71263

Awww Thank you. Last year we went to LSU in Shreveport and they did MRI, ECG, Ultra sound., and sent us to the Optomolagist. I know he needs to see the eye DR regularly? How often does he need other test. The one one his eye is tiny it is on his eye lid. He seems so healthy. Here just recently he was in the hospital for a stomach virus. well both of my kids were, and Becky was fine after she got out. well CJ had diarrhea for a week afterwards and we cant figure out why? all the DR would say is well he must have a real sensitive system. I told you this cause ever time there is anything with him I set and wonder HMMM is this normal or is it to do with his CMTC. He is fixen to have his yearly checks done. And I am gonna talk to them about the Orthapedist. Thank you for the info. It is greatly apprectated.

ednbec

It could be your child is ultra sensitive in his digestive system. Ellayna has ultra sensitivity on parts of her skin, scalp, and her ears. All were contributed to her increased blood flow to these area's. Another child from the CMTC group, Van, has had digestive tract problems too. Maybe his mom Lisa will jump in the conversation when she returns from Van's evaluation in the Netherlands.

We see the Doctors with Ellayna's affected area's about every 6 months, others we see once a year unless something comes up. But with so many Doctors and all in the same hospital it seems like we are there at least once a month. She also gets renal scans every 3 months to check for tumors and AFP blood draws every 6 weeks to check for Wilms tumors, plus blood draws to regulate the Lovenox blood thinners. Ellayna can handle about 4 appointments a day so we limit it to that.

Thanks for adding me to your friends list.

kittycat71263

Thank you so much. I feel like you all are the first ones that have listened to me. Sometimes at night he seems like he is in pain, i hold him and try to make it better but nothing helps. we had this same problem at the age of like 2 or 3 months and they said it was colic. I knew they were wrong. Well then when I got upset on the next visit, then he said well it is bowel spasms they gave him medican ( all it did was put him to sleep). It is like when you tell a DR something they look at you like your crazy. Like i started noticing that his bellybutton was starting to stick out. I kept telling the DR and I don't know how many times he said (well he is gonna have an outy.) well this last time I took Cj to the DR he said ( has any one told you that he has an umbilical hernia?) And see I new it way before him. Which it now looks like it is getting better. But any how thank you all so much!!

dcarlo

I know nothing about your son's disease, but I know lots about difficult diagnoses off diseases. Find a Children's Hospital connected to a Medical School. I have had three experiences in my life time where that made all the difference in the world, one was with my son when he was a little tyke. Now he has children of his own,.

Ellasmum

Hi
Our youngest daughter, Eloise, has CMTC. She is 2 1/2 but our oldest daughter Maddy had similar problems as your son in terms of waking up screaming and funny tummy etc. She had reflux and still at the age of 5 has trouble sleeping, reacts strongly to certain foods and even gets the hiccups everytime she laughs. My neighbours child is 9 months old and is perfectly healthy but he keeps waking every night screaming in pain and just wanting to feed. He has just been diagnosed with reflux. My other friends 3 month old sleeps with a breathing monitor because of reflux because she keeps choking on the milk that comes back up and she is an otherwise completely healthy child. It might be worth discussing the possibility of reflux with your doctor. Google it and you will find lists of symptoms. If it is reflux, they can put him on a mild medication to help him sleep and kids tend to grow out of it. Best of luck with the sleep situation and of course the CMTC. Lack of sleep and a screaming baby really can't be helping with what you are already going through. Best of luck and it does get easier!

kittycat71263

Thank you for the info. yes we did check into that. They kept changing his formula and even had him on the special formula. But later the dr said it was not reflux. But I will bring it up again. Thanks!! Cathy

kittycat71263

Hi All, Well we go back to the geneticists on Thursday. Don't know why they are sending us there again? They even called me and said why are you coming back?? I was like ummm Idk. I just do what the pediatrician says. We are still dealing with the stomach issues. i hope soon w can find out what it is. It hurts me so bad to know my baby is in pain and I cant fix it.

LexVanDerHeijden

Have they done an ultrasound of the internal organs? That could reveal maybe something and is not very hard for the child.
Please collect as much info of your child and send this to me so I can take care that the info goes to Dr. Maurice van Steensel in order to prepare himself for the Washington DC meeting on the 18th of July.

kittycat71263

Hi Ok can u send me the address so i can send what i have of the paperwork. We have to go see a orthopedic surgeon. His leg is bigger and his foot is turned in. She said she is thinking they will probably do surgery? He had an MRI, MRA, ultrasound of the belly, and seen the opthamologist. All this was done last year. I have this Dr.s email (the geneticist) and she would like to know if you could send her information on CMTC and how often the test may need to be done. I did tell he that the Dr will probably have to determine that in July. She wants us to come back in 6 months.

dash

My son is almost 5 and I went through some of the same things with him from the time he was an infant. He always had stomach issues. I was breastfeeding and kept thinking it was something I was eating that was upsetting him, when he went on formula I kept switching formula thinking that would help, and finally at 4 his symptoms all started making sense and added up to GERD. The dr. confirmed this diagnosis. He was on medication for awhile and it's now pretty controlled by diet - still has tummy pain off and on though. I think he has CMTC, as he has the blue marbled veins on the back of one leg and up into his groin. I wonder if there is a correlation between CMTC and reflux??

kittycat71263

Wow, thanks that is a good possibilty!!

Joshua0

Hi, I wanted to share with you my experience with my 6 year old son who has CMTC mildly on his right leg and groin. He experienced terrible "colic" as a baby, and at six months he had skin tests for allergies and was found to be allergic to wheat, dairy, eggs, fish and nuts. At around 12 months he began vomiting only at night, every second night or so. It went on so long he began to lose weight and we were all exhausted. After multiple gastro specialist visits and numerous tests (including a false positive blood test for coeliac disease), it was found he had a urinary tract infection which was cured with one round of antibiotics. He was on a strict diet, but is now fine with no food allergies, but does get croup and asthma and is allergic to dust mite and horse hair! All of which, I am aware, may be totally unrelated to his CMTC but I thought worth a mention. We have been seeing the skin specialist since birth, and he is now seen 2 yearly to monitor leg length.

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