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Go Back   Vascular Birthmarks Foundation Forum > Hemangioma Help > CMTC

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  #11  
Old 09-17-2010, 08:09 PM
abatie abatie is offline
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The echo. for her heart and glaucoma test were the only ordered by the derm. She also had us see a pediatrician at Mayo along with PM&R because Becca was behind in motor and had limb length/girth differences. We will continue with the glaucoma testing. As far as her derm. we don't need to go back unless we have new problems. The first year was the tough one and now we know what to expect/what is normal for Becca. Her heart will continue to be monitored closely. The derm. did help us get the hearing testing done just because we needed someone in the system to order it.
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  #12  
Old 09-17-2010, 08:10 PM
abatie abatie is offline
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If you want to read about what we have went through with Becca check out her CaringBridge-http://www.caringbridge.org/visit/beccabatie It may be interesting to you to see how the winter went and our struggles right after she was diagnosed.
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  #13  
Old 09-17-2010, 08:21 PM
cbasser cbasser is offline
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Thank you for all your help. Please keep us posted on Becca's progress. I visited your sight and she is just precious! In your picture of CMTC it looks like her affected leg is larger than the other. Is this the case? George's affected leg is smaller in length and girth by just a cm at this time.

Last edited by cbasser : 09-17-2010 at 08:28 PM.
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  #14  
Old 09-18-2010, 12:51 AM
abatie abatie is offline
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Actually Becca's affected leg is also smaller (it is probably just the angle of the picture). She goes through times where her affected leg is smaller but it also seems to catch up after she stops growing. Right now it is just a little different but at 6 months it was more than 2 1/2 cm different in girth. The length has varied greatly. I was really worried about the difference early on but you may see the same thing we have and a cm or two isn't as big of a deal when they get bigger (I do remember being really scared at the stage you are at!) I am just glad I can help someone else through this journey because I felt so alone when we started out!
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  #15  
Old 10-01-2010, 04:53 PM
cbasser cbasser is offline
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Well, I asked for a referral to a pediatric dermatologist and was denied by his doctor. Apparently, he and WebMD can handle anything. I'm very frustrated considering it was me that came up with the diagnosis and it's me suggesting tests and a plan of action. It's especially difficult to have a plan of action when I don't know much about CMTC. Is is really too much to ask for him to be diagnosed by a doctor that has actually seen CMTC before?
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  #16  
Old 10-01-2010, 07:24 PM
abatie abatie is offline
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First, that would be the last time that I would use that doctor for anything. Secondly, do you have to have a referral for your insurance? If yes, then I would find a new primary doctor. You do have to have your child seen by someone that actually knows about CMTC. If your child experiences the things Becca went through her first winter it can be scary. Becca has been dismissed from her pediatric derm. at this point but will be seen by her again if we have new problems. We had figured out Becca's CMTC too. We had taken her to a regular derm. who then referred her on to the ped. derm. I know in our case Becca's family practice doctor is very careful with her. If there is a problem and she isn't absolutely sure why it is going on she sends her to a specialist. She always tells us that she would prefer to be safe since she doesn't know about CMTC and because it is so rare.
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  #17  
Old 10-03-2010, 01:26 AM
cbasser cbasser is offline
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Unfortunately, we are military so we don't have much of a say in who we see. I have scheduled his next appointment with a different doctor in the office that has actually referred one of my other children to a dermatologist so we will see how that goes in a couple weeks. It's like a crazy maze to get anything done! Thanks again for all your help. Oh, one more thing, do you know if it is normal for other areas of CMTC to show up after they are older? I recently noticed a larger vein on the side of his chin that was not there when he was born.
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  #18  
Old 10-03-2010, 06:01 PM
abatie abatie is offline
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Sorry to hear about the doctor situation. We have faced some similar things with our insurance. There is a great children's hospital in Sioux Falls, SD that would be much closer to home for us that could at least do some of Becca's care but we can't use them because they are out of network.

I have never heard of it appearing that much later. I have heard of it showing up a few days later.

Becca is having a terrible time the last few days. Her body temperature was so low this morning and her feet felt like they had been in an ice bath. I haven't been able to fill her up today. I am guessing she is burning a ton of calories just trying to maintain her body temperature again. It is much easier this year though because I have been through one winter and I know what to expect. Her poor little leg was so purple. I left her tights on after church today and just put her pants over the top (that is part of how we deal with CMTC in South Dakota during the winter!) Extra socks! Extra layers! Hopefully tonight will be warmer.

Last edited by abatie : 10-03-2010 at 06:07 PM. Reason: posted before I was ready
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  #19  
Old 11-07-2010, 06:06 PM
cbasser cbasser is offline
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Well, we have had our first cold spell and George is constantly moaning. He just seems irritated. He doesn't sleep well unless I wrap him in a thick blanket and put a hat on his head. It makes me nervous, though.
Have you figured out what Becca's spot on her nose is? I hope this winter is not too rough on her.
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  #20  
Old 11-07-2010, 06:40 PM
abatie abatie is offline
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Becca's spot went away- who knows! I will tell you that the cold issues are much better the second year. With Becca we purchased a small heater for her bedroom and also had her sleep on a heated blanket under her crib mattress set really low. The The doctor told us the heated blanket was safer than a bunch of blankets. I know it sounds scary but it made all of the difference for her. We also had to dress her in layers. Being in South Dakota makes it worse. Becca wears tights under her pants during the winter and then wears either thermal underwear or long-sleeved onesies and tights under her pajamas. It all really helps. Last winter Becca did her best sleeping when we would come home from daycare. She would fall asleep in the car on the way home and then I would leave her sleep in her carseat, with her snowsuit on, and the blanket on top!
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