Vascular Birthmarks Foundation Forum

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-   -   Meet Ashley - VBF's CMTC Parent Rep. (http://birthmark.org/board/showthread.php?t=3383)

swsc 04-06-2009 05:47 PM

Meet Ashley - VBF's CMTC Parent Rep.
 
Meet Ashley and her son Gavin.
Ashley is the new VBF parent representative for Cutis Marmorata Telangiectatica Congenita (CMTC). Read "Gavin's Story" to learn more about CMTC and a mother's search for answers.

http://www.birthmark.org/awareness/gavin.php

sheuker 09-09-2009 09:42 PM

My name is Stephanie and I have a 5 week old daughter Macy that was born with a prominent vascular birth mark under her nose to her mouth and under her mouth. The doctors have told me this was a hemangioma, it has not changed shape or grown within the past 5 weeks. She does have 2 hemangiomas close to her spine on her lower back. Macy was also born with the splotchy mottled pattern as well. The doctor also told me that he wasn't for sure but he thought it could be Harlequins and it would go away in a week or so. Well, the mottled pattern appears very prominently when we bathe macy and when she is upset. I have been researching like crazy on a daily basis and driving myself insane with emotion. We finally get to see the Pediatric Dermatologist next week which I feel was torture making us wait 6 weeks too long. I came across your son's pictures and I feel like Macy might also have CMTC because it looks identical to Macy. I feel like our primary pediatrician has neglected us and she was too busy to get Macy in for her 1 month appt. and we have to see the CNP. I am very frustrated because I feel like they should maintain consistence with her care due to there being an issue which is unknown at this time. Well my specialist appt. is next week and my pediatrician has done no tests except the typical blood work. I don't know for sure what is going on but I feel like I have to advocate for my daughter because the pediatricians do not seem to be trying to figure out what is going on. Is there anything that needs to be done test wise ASAP. I am concerned about vision, I don't want her to have deficits because we didn't get treatment in time. How is Gavin doing development wise? Do you recommend any specific physians. I am from Ohio. I am in the medical field and I am an Occupational Therapist. Thank you for your time.

missy 09-10-2009 12:54 AM

Where are you located?

Have you gotten in contact with our cmtc expert?

http://birthmark.org/experts.php

If you believe your child does have CMTC, then you need a specialist.

Missy

sheuker 09-14-2009 09:32 PM

I am from near Lima, Ohio. I contacted the CMTC expert and she recommended i get a for sure diagnosis. I will let you know how Thursday goes with the ped vascular specialist.

missy 09-15-2009 01:31 AM

Do let us know how things go on Thursday!! I do hope you can get a for-sure diagnosis... that would be great!

Missy

sheuker 09-22-2009 08:43 PM

We didn't find out anything at the pediatric dermatologist. She said it was too early to determine whether my daughter has hem. or port wine stains under her nose and on her bottom lip. She said that she could have areticulating birtmark over her entire body or circulation issues-it was too early to determine. My daughter is 6 weeks and they don't want us back for a month. Well that is too long and I'm getting two other opinions because I want to make sure I am doing everything that I can. To me she looks like the pictures of cmtc. Who normally would diagnose that. I live in Wapakoneta, Ohio and have to drive 2 hours for these appointment and want to find out what she has for sure. I'm frustrated because when people ask what is going on- I don't know and I am her mother.

abatie 10-21-2009 03:05 AM

I am a parent of a 3 month old that was diagnosed with CMTC. It was suspected at birth but we were told that at that point they couldn't diagnosis her for sure. I am wondering if there are other people that can tell me what to expect, what doctors we should be in contact with, etc. Many doctors saw her at birth and nobody knew what was going on with her. On a fluck a nurse suggested calling the dermatologist who was the person who actually diagnosed CMTC. My biggest concern at this point is keeping my daughter's body temperature at a normal level. She is not able to regulate temperature at all and even dressing in multiple layers she still struggles. The doctor has suggested that she sleep on a heating pad and has a small portable heater in her bedroom. This has helped dramatically. She is now able to sleep through the night for the first time ever and has now doubled the amount of formula she is taking at a feeding. Does anybody have any suggestions on other things that I can try?

kristinagriffing 11-10-2009 07:47 PM

Hello everyone! My daughter is 6 years old right now and my husband and I are her biggest advocates!! It appears we have found the missing puzzle piece here on your website!! Thank You! It appears that our daughter has CMTC. After reading the signs/symptoms I was moved to tears BECAUSE someone FINALLY understands!! No one has listened to us so far and we have been to some top doctors at Children's Hospital of Philadelphia! We actually began researching three weeks ago after our daughter had an adverse reaction to septocaine during her dental work. My gut feeling was that there is some connection to her birthmark. So, here I am, finding out about CMTC. Kaylin has been diagnosed with hemihypertrophy (right side from the hip down), foot abnormalities(big space between 1st and 2nd toes, with alternating big and little toes), and put on the spectrum for autism which comes with its list of learning disabilities, which we have done extensive alternative therapies and biomedical intervention and she is functioning soooo much better. Kaylin has a large marble like birthmark on her back that takes up the majority of her right side and it does cross over her spine and is present on some of her left side. Kaylin's birthmark is so noticable when she is cold or cries. She tells us she "feels better" in the summer when it's warm and she has soooo much more energy and her entire personality is so much happier. As it starts to get cold, Kaylin begins complaining of numbness and tingling in her feet and legs when sitting and lack of energy and endurance. IN the winter, she still takes naps because she just gets so tired. But in the summer, that girl can run circles around me. This is so interesting to me. But no one can explain it, except that its just her personality, etc. She developed two lumps near the bottom of her spine when she was three and a lump in her chest as well that basically, they told us was fat. Hmmm, found that one interesting! Kaylin was born with this birthmark and a very, very small head. But no one had a diagnosis. They just said it was some kind of mark and it was no big deal. By three months of age, Kaylin's growth was off the charts for her head, weight and height. Her head was so big that it raised questions from our friends. But, ped said it was okay. Kaylin has always been bigger than average. We had a tremedously difficult time keeping her warm as a baby. Layers after layers and her hands and feet were still freezing. Kaylin has had what was called silent seizures but they said this was related to the autism. Kaylin also cannot seem to tolerate ANY type of chemical via air, water or food. We have had to change her environment completely. She also has an IBD. I have always felt there may be a liver and oxygen component with Kaylin's body but I'm just the mom listening to my instincts. Kaylin also had a severe reaction to one of her vaccines when she was 5 months old as well as not tolerating general anesthesia well.

I am concerned since she has had the septocaine. She has not been the same. Soes anyone know if this may be related to CMTC? Are there certain meds you can't take? I have read somewhere that you cannot take the birth control pill with CMTC. Just wondering

We just saw a ped cardiologist this morning and that was a big waste of time, except for getting an okay on her EKG and echo. Her heartrate has been as high as 145 beats/minute for some reason and her blood pressure is a bit all over the place and as low as 69/42. I need to find a doctor that can give us a formal diagnosis!! I emailed Dr. Liang about two weeks ago, and I am waiting to hear back from her. I am hoping she can lead me in a direction to get a diagnosis and move on from there. However, I am beginning to think we just need to fly to the Netherlands to have her seen!!

Sorry for such a long post. Six years of unanswered questions, emotions and tears is building up and I just want to talk to someone that will listen, truly listen, help us and not think I am crazy. Every doc we have seen tells me that birthmarks don't change color with crying and temperature! I can't tell you how relieved I was to read that symptom!!

Does anyone have any advice for me? We live in Delaware but are willing to travel. We are inbetween Philly and Baltimore.

EliKyle 11-17-2009 04:11 AM

I'd never heard of CTMC until I stumbled across these postings tonight, but I have a 3-month old boy who has some of the traits described here...at birth - had mottled/marble looking skin, very cold hands/feet that could not get warm despite multiple layers, etc. Most recently, we had a dermatologist evaluate a cluster of broken blood vessels on his cheek, which were diagnosed as a cavernous hemangioma. [The suggestion was to let nature take it's course since it may involute/shrink, but as his Mom, it's difficult to sit back and just watch it grow in the proliferation stage (he has several telangiectatica starting to spread across his cheek :().]

I had a totally normal/healthy pregnancy, but interestingly, I had a vascular issue myself - onset of varicose veins mostly in my right leg. Not sure if there's any connection...

Some other history on my son:
- had a small head at birth (still does have very small head)
- is very strong with his neck/legs
- growth seems to be stunted over the last 2 months...although he was large at birth (8 lbs 10oz), has only put on 1 pound in the last 2 months and seems to be stuck at 12 pounds.
- in addition to hemangioma on L cheek, has a very visible vein on his L eyelid that seems to be getting darker and other visible veins by his forehead/hairline.
- had minor breastfeeding issues since birth - a lazy latch (to this day finds it difficult to finish nursing without excessive gas bubbles)

Again, I've never even heard of CMTC until this evening, but I am wondering what course we should take (if any) if this sounds indicative of any of the cases you've seen. For now, we have an appt with his pediatrician this week, plus a specialist (pediatric dermatologist) to evaluate the enlarging hemangioma-like growth, but I'm not sure if we should be searching further for possible CMTC as well. Thanks!

nickbar 11-17-2009 05:07 PM

Please feel free to email me. I would like to know where you are located and see if I can recommend a specialist nearest you that might be able to give you another opinion on your son's hemangioma, CMTC, other vascular issues.

Large hemangiomas can rob the body of nutrients.... and some children may have failure to thrive as a result. I would recommend having this investigated further.

Please see my email below


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