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-   -   Just Diagnosed- lots of questions (http://birthmark.org/board/showthread.php?t=4086)

cbasser 09-15-2010 07:13 PM

Just Diagnosed- lots of questions
 
My 2 month old was just diagnosed today with CMTC with my prodding. I was told originally that he had "hemangiomas." This diagnosis comes from his regular pediatrician. He has recommended a renal ultrasound and also a visit to the opthamologist to check for glaucoma. My question is, is this enough or should I ask for him to be seen by a specialist? His CMTC is located on the outside of his L leg from thigh to tiny toes.

missy 09-16-2010 12:08 AM

If you'd like to see a specialist, then ask to do so. Go to our expert page and ask the cmtc expert

http://birthmark.org/experts.php

Where are you located? Probably, you would have to travel to see a specialist.

And welcome to VBF!

Missy

abatie 09-16-2010 11:56 AM

So glad to have another parent on here with a child with CMTC. My daughter is 14 months and was diagnosed at 6 months. She is affected on her leg also from hip to toes. Welcome! I would see the opthomologist. Also, our daughter saw a pediatric dermatologist to be diagnosed. I will tell you that it can be a frustrating road because most doctors are not going to know anything about CMTC - believe me -I just got back from trip 6 to Mayo Clinic!

cbasser 09-16-2010 12:58 PM

I wonder why it was so easy for me to get my diagnosis? I just worry that they will miss something because they don't know what to look for. Basically I told them, "this is what I think he has," and they left the room for 15 minutes to look on the internet and said, "yep, we think you're right." I'm concerned about heart problems. My baby sleeps for hours and hours. Sometimes 16 hours straight, without eating. He's growing well so they aren't concerned. I'm so glad I found this website! Please keep posting on your daughter's progress. I think the hardest part is not knowing how this will affect them as they grow.

abatie 09-16-2010 05:24 PM

I had figured out what Becca had too! I had figured it out prior to our specialist appointment. We have been told that Becca's heart issues aren't related to her CMTC but she does have three holes in her heart that are a significant impact. The sleeping issue is part of CMTC (especially early on and during colder weather). We went through long periods of sleep with Becca. She does sleep with a heated blanket and a special heater during the winter. The summer was great for her. We are now gearing up for another long winter.

cbasser 09-17-2010 12:57 AM

I can't imagine trying to keep him warm in the winter. Luckily, we are in Florida but he still gets very cold. People are constantly asking me why he is wearing long pants and socks. Did you suspect heart issues with Becca or was it just done to make sure everything was fine?

abatie 09-17-2010 02:00 AM

Be glad you are in Florida. We live in South Dakota and it gets really cold for Becca. We didn't suspect heart issues. We aren't really sure why the echo was ordered. The dermatologist may have heard a murmur and ordered it or she may have just done it as a precaution (that is what she told us at the time). The temperature issue does get better as they get older. Becca is already much better at regulating her body temperature. At times last year her temperature fell as low as 89 degrees. Most of the time she stays around 95 degrees now (it was higher in the summer). Becca has also had hearing issues which we have no answers for. They can't even tell us what is going on with her because on hearing tests she comes out just below normal but goes for long stretches of time without responding to sound. The other thing is that Becca had also had limb length/girth differences but these have resolved. She currently gets speech services for communication issues.

cbasser 09-17-2010 01:23 PM

I'm sorry that they are unable to figure out her hearing issues. It can be so frustrating to be told "we don't know" and "wait and see."
In all your travels, have they told you how often CMTC occurs?

abatie 09-17-2010 03:37 PM

Not any numbers on occurance. If you research you will find that it is very rare. I don't know of anyone else with CMTC.

cbasser 09-17-2010 04:46 PM

What tests did her dermatologist order? I just don't want them to miss anything. Thanks for answering my many questions!


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