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Old 12-14-2010, 04:21 AM
SamB SamB is offline
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Join Date: Dec 2010
Posts: 2
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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!!!!!!
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