My newborn has CMTC, now what?

[abatie]

Tammie,
The Facebook group is called CMTC-OVM, Van Lohuizen syndrome. There are a lot of really involved families that are there regularly for advice. If you join that group I can personal message you my e-mail for Jessica. Becca's leg looks different depending on the moment. I just spoke to a child development class last week about our experiences and I showed them pictures that were taken over a group of minutes and they could see differences in the pictures. Becca has done amazingly well considering all obstacles that she has faced and all the support I initially got here (this is where I started my journey) and from all my CMTC family on FB has inspired me to be of whatever help I can be to other families.
Alison

[emclean]

Tammie, Welcome to the group (umm 3 months late!) As you can see I'm not on here much but I am frequently on the facebook page along with a lot of others. Grayson's markings have faded a lot now that he is chunky. I kind of wonder if they will show more when he slims down. Kind of like how it's hard to see veins on a chubby person but easy on a very skinny one? I would love to hear how Emma is doing! Grayson doesn't have any other complications that we know of. I think his calf muscle is effected but that's it. There's this spot that is darker and I can press in on it and there doesn't seem to be much muscle there compared to the surrounding area and his other leg. But we'll see how that plays out. If you or your daughter would like my email I'd be happy to help! Just private message me or find me on facebook.

[lillyyyy]

Hello,

Looks like our 2 month old son's spots are not PWS, but CMTC (though I still feel the stain on the cheek is PWS).
It's on such a large portion of his body. We have an appt for an Opthamologist and Neurologist next month. I pray to god all findings will be negative.
I also hope the coloring on the skin will fade away over time. He is such a good boy. I don't want him to have social difficulties due to the redness of his skin.
I would very much like to be in touch with other ppl familiar with the disease. I want to be as much informed as possible.

Thank you in advance.

[abatie]

Lillyyyy - did you send me an email? Scheduling opthamology and neurology are both good. Also, your child can have different types of marks. Our daughter has CMTC but also had stork bites between her eyes and on the back of her neck that were dark at birth. Sometimes fading occurs and for some children it doesn't. Also, for most of our kids the marbling is much worse when cold, sick, or stressed. Living in a warm climate helps (I don't have that). Keep in touch and best of luck!
Alison

[lillyyyy]

Yes I did send you an email (Efrat) Thank you!