Discussions By Condition: Medical Stories

could he have all three or something different

Posted In: Medical Stories 0 Replies
  • Posted By: rlriley8
  • November 15, 2006
  • 04:35 AM

my son was born with what they call port wine stains all over his body.we were told he would be fine by age 2..he has complained about pain since he started talkin..no doctors can expain they look at me like i want some drugs or something..they never listen to him... since birth he has been diagnosised with 2 other similar disorders..which in the research i've done explains most of his pain..symptoms arms legs growing at different rate,port wine stains over whole body,migraines,dizzy spells,back pain, hip pain,fatiques easily, huge hemiangioma left leg,one growing right shoulder,learning problems, left arm turns blue when explosed to cold-severe pain in arm, has problems using it, just to name a few of his ever growing probs...diagnosis....bornw/Cutis MarmorataTelangiectatica Congenita, at age 9,Klippel-Trenaunay Syndrome, at age 12,Sturge-Weber syndrome...I'm so confused does he have all three ,one both or something else...and if he has these disorders why do the treat us like we are lying or making up new pains and old ones for that matter...please help anyone:eek:

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