Guest guest Posted September 13, 2002 Report Share Posted September 13, 2002 Hi Debby..... I know I am days late in getting to the email from you about migraines and Vasculitis.... Ty has suffered with migraines since he was about 7....infact little did we know that that was that start of everything....We had very busy weekend lives with our 2 older kids..and Ty went to everything with us...chalking up busy days and late nights...it was always on a sunday night that he would not feel well...would throw up and go to bed with a headache....would wake up in the am feeling fine and go to school...these would happen maybe 2xs a month....my husband really feels it when he is over tired so we just thought he was like his dad...no other symptoms...the rest of the time he was fine... Then he would occassionally get these weird rashes...legs and arms...bright red ...covering the entire area...swelling....skin would get really hot...Ty does have sensitive skin like me so we started changing laundry soap...softner....body soap..everything under the sun to figure this all out....and it always got betteron it own....had to give him benadryl one time because we were away and thought the sheets in the motel might have caused it...this was the worst he ever got...at that time.... Then came the diagnosis of Crohns...I let them know about these occassional headaches....just happen to be coming in for checkup when he had one of these...the doctor took one look at him....we had the lights out ...the door closed and he was curled up on the examining table....asked him a couple of questions and said he has a migraine...off to the Neurologists office...more tests...and yes ...Migraines...he takes meds every night to help prevent them...and fiorenol when he gets one...it knocks him out for about 2 hours and wakes up fine....he can go months without one at all....and then he can get clusters of them 3-4 days in a row for months....never know ...although we do feel the fall and winter are his worst months for them... As far as the rash...it came with a vengence the fall of his freshman yr...thought it was an allergic reaction to the new band uniform...either the material...dry cleaning chemicals....or something....but it would not go away....and the rash was terrible...swelling so bad that it was very painful to put shoes on... His GI doctor saw the rash...nothing that was related to IBD so we were sent to the RA doctor.....Ty was then diagnosed with RA and Vasculitis...2 for one...lucky guy..... The rash got so bad that he was not able to walk....anthing against his skin was extremely painful...missed 7 months of his freshman yr because he couldn't walk...his legs were huge...the RA doctor tried all different things....some didn't work at all...some for a very short time...that is when he was started on cyclosporine...which is an anti-rejection med....this is the one med that has helped him the most.... We also see that his rash gets worse when his Remicade infusions are spread out.... at one point he was doing well so they decided to lower his cyclosporine....within days the rash was back....bad...so back on the higher dose... I wish I new of a way to stop these auto-immune diseases to stop adding up....Ty is only 19 and has over 7 of them....I remember asking his doctor yrs ago...what else could the immune system attack....shows how naive I was....now I know that it can attack anything and everything....so we make sure that all doctor appointments are kept...take the meds that they want him to take and report anything to them... soooo take care of yourself....pay attention to what you body is telling you.... I am so sorry that this is sooo long.. hope this gives you some info to go by... take care and talk soon Luanne Ty's mom Quote Link to comment Share on other sites More sharing options...
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