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-   -   My newborn has CMTC, now what? (http://birthmark.org/board/showthread.php?t=5492)

emclean 09-05-2011 07:31 PM

My newborn has CMTC, now what?
 
My baby, Grayson, was born 9 days ago with a large "birth mark" on his left leg. We've seen 4 different pediatricians none of whom had any idea of what to think. We were told it is definitely vascular and one said it may be a hemangioma one said definitely not... you get the idea.

I'm 100% sure it's CMTC. Reading the descriptions and looking at pictures it's classic. Marble appearance, there all the time, has areas where the skin is tight, gets darker when cries or is cold. On his calf by his knee the area is also indented compared to the other leg. It also extends from his sacrum on that side, although on his bottom it's lighter.

My question is what kind of specialists should I be seeing? We are being referred to a pediatric dermatologist but don't know when we will actually get in to see them since there is only one in the area and I'm still waiting on a referral. We live in the Orlando area so there is no shortage of peds specialists for us to see. I want to make sure we get the right treatment and since this seems to be a rare disease I'm counting on having to dig for information. I'm going to attempt to upload some pictures. Any advise is appreciated!



emclean 09-05-2011 07:38 PM

3 Attachment(s)
Here are the pictures, but I believe you should be able to see them now

abatie 09-05-2011 09:56 PM

First take a deep breath and know all will be okay. CMTC is about managing as things come up. First get the referral for the pediatric dermatologist (although I would ask before the appointment if they know what CMTC is). There is nothing more frustrating than doctors who need to be educated. By about six months I would be looking to get a glaucoma test done and I would do that each year (some doctors will tell you it isn't needed if CMTC isn't on the face but the parents I have been in contact with all test yearly). Monitor for temp changes and keep track. Watch for size differences between the affected and unaffected limb. I watched how the specialists measure and I also keep track at home on my own. Also it is important to get a thyroid test. If you would like to e-mail me feel free.
abatie
thebaties@valleytel.net

emclean 09-05-2011 10:37 PM

Thank you so much! I actually signed your guestbook on Becca's website. The board here hasn't been very active lately, so I wasn't sure how often it is checked. I also found the facebook page for CMTC which is awesome. I guess you could say I've been busy today :)

I appreciate all the tips! I feel fortunate that I seem to be headed in the right direction so early on. Reading what other people are going through is helping me feel confident. Thank you again.

abatie 09-06-2011 12:36 AM

Just glad I can be of help to someone. I check in on this board almost everyday but I am probably by far the most active here as far as CMTC. I haven't had a lot new to post or ask questions about lately so that is probably why there hasn't been a lot of activity. Missy also posts a lot and has many good suggestions and she will be around tonight or tomorrow I would guess.

missy 09-06-2011 12:09 PM

Hi all!

I actually check twice per day, but was waiting for abatie to post! Because, by far, she knows much more than I about this, or most anyone else.

Congratulations on your new baby!!! He's beautiful! I know how it is when you find out your baby has something that he will have to deal with his whole life and how that can suck the energy and time right out of you. It just takes your wind away, doesn't it? Make a point to turn the computer off for a while and spend some precious time with Grayson. That's all he really needs right now.

Has your referral come through? And, where, generally, are you located? Perhaps we can find someone who does already have some knowledge about CMTC. You know, someone that abatie has already educated!! LOL!!

Missy

abatie 09-06-2011 01:02 PM

Missy,
Emily is located in Florida. I don't have any knowledge about that part of the country and doctors who may have knowledge.
abatie

Emmas_Aunt 01-20-2012 03:04 AM

Greetings,

My niece's (Jessica) baby girl, Emma, was born with CMTC in June 2011. We live in the Portland, OR area. She was transported to OHSU, since the hospital she was born at had no clue what she had. She spent her first week of life in NICU. We were shocked when we learned how rare this is, but, doing much better about the shock of it al!

We just had an appt today and asked about a support group and were given this web site. There have been so many times that Jessica has wanted to talk to another mother dealing with this!

Emma's left leg is the worst of all of her marks, looks very similar to Emily's son Grayson's leg. There are 4 lesions which break open and bleed, we were told to keep vaseline on them to keep them moist and keep a protective barrier over them. Most seem to have healed but one which is located above her knee. Both of her arms have marks which have faded, but, get darker when she is cold or crying. She has marks on her abdomen, on her back (over her left kidney) and a small one on her head that is fading and being covered by her growing hair.

They said her spine was crooked when she was born, she has one less rib on one side and her left kidney is smaller.

She had a glaucoma test, negative!

Her left leg is 1/4 inch shorter than her right.

But she is beautiful, happy and growing! She is advancing as she should. We are thankful to have found this site!

abatie 01-20-2012 11:23 PM

Welcome to this site! I am a mom of a 2 1/2 yr old with CMTC. I would be more than willing to talk to Jessica about the experiences we have had. I have in the last year seemed to attract new families and have communicated with many. This site is not as active as some. Another option would be to join the group on Facebook which is more active. Also, if Jessica would like to read Becca's story she could go to her CaringBridge -www.caringbridge.org/visit/beccabatie . Again welcome!
Alison

Emmas_Aunt 01-21-2012 03:13 AM

Thank you Alison! My name is Tammie. Jessica would be thrilled to speak to another mother who's child has CMTC!

She doesn't have her own computer and uses her phone, she wasnt sure if she would be able to view everything. But she was very excited that I posted yesterday.

I read Becca's story...she is precious! Her leg looks great! I hope Emma's will fade like that!

an you tell me what FB page it is I found a coupld that had no one on it.

Thank you!!


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