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-   -   Information Requested (http://birthmark.org/board/showthread.php?t=4220)

SamB 12-14-2010 04:21 AM

Information Requested
 
Hello,

My son is now 11 (with CMTC) and God has certainly had his hand in getting him here. He is such an amazing lil man, from birth he has been in and out of hospitals and Dr.s. He was born with the telangictacias and Mongolian blue spots, glaucoma, hypospatious, his right leg and left arm is larger than the others, the left side of his face is a bit bigger, he has no left jugular vein, a narrowing of the splinic artery and the carotid artery, at 2 his right kidney was removed due to complications with the lymph vessel leaving the kidney (his kidney burst due to fluid back up), he has spidering of all vessels with his body (its not an skin condition "rash", its internal as well). He is sooooooo super smart but hyper-focuses on everything, socially he has all kinds of issues (ya know other kids they don't understand and 90% of the time their parents are worse) We reinforce his self esteem constantly because he needs it ohh so much. I am very frustrated with our current situation. He has now as of yesterday had his 6th "TIA" in 4 yrs. As with most of what has gone on with my lil buddy, no one has any answers. If anyone here has any answers it would be great. He presents with full blown stroke symptoms which dissipates after a few hours. We take him to the Childrens Hospital and all they do now is make sure he is stable and we go home. Ugh!!!!!!

missy 12-14-2010 11:47 AM

Hi and welcome!

Your lil man sounds quite strong, bless his heart.

have you visited http://cmtc.nl ? It's a good site, but might not be in English. Visit our CMTC doctor at http://birthmark.org/experts.php Dr. Liang is good for asking questions to.

11 is a tough age for any kid ... my oldest is 11 and he's about to drive me bonkers!!

Missy

missy 12-14-2010 11:51 AM

Sorry. Just read your other post and I bet you see Dr. Liang at Boston anyway. So, my advice on that sucked. Shoulda known! :)

I wonder if there is someone else closer that had some experience and could coordinate care with the Vascular Clinic in Boston?

Lemme ask around. Will get back to you when I hear.

Missy

missy 12-15-2010 11:41 AM

Hi SamB,

Just to let you know... you are still on my list!! I have sent a request out and am waiting to hear back.

Missy

missy 12-15-2010 05:42 PM

The answer you got in your other post is the answer I found too. You can get in touch with Dr Levitin at http://birthmark.org/experts.php and he will help you.

Missy

nickbar 12-20-2010 11:49 PM

SAMB did you receive my email?


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