& Katrina

[Guest guest]

I know you posted a while ago but I remembered having the

frustrations you have. My son was diagnosised 1 1/2 years ago. His

first fever was at 6 weeks. He was hospitalized from then on for

high fever, diahrrea, and dehrydration about every 4-5 weeks. His

Pedi was going crazy trying to figured out what was going on. She

sent us to every " ologist " that would see us. I don't know how many

upper and lower GIs and CT scan he had. As a parent I was out of my

mind with worry and wondering how all of these doctors could not

figure out what was going on. A full two years worth. We

had " ologist " appointments at least once a week. Then we were sent

to a Rheumi in Houston at Texas Childrens Hospital because we could

not get in with the Rheumi in Corpus. Within two visits she had it

figured out (2 months). He has been on a battery of meds but less

symtomatic on the meds. He, I understand, is very symtomatic.

Before meds, 20 out of 20 symtoms, now he is down to about 10. He

still has fevers. We still have to deal with a doctor or two that is

clueless. June he was very sick. Our pedi was out of town so we saw

her associate. He told me Clay had an ear infection, while looking

through his 4 inch folder. I told him to call Houston. Within 10

minutes of that conversation we were on our way to the hospital.

Clay gets extremely dehydrated even though we force liquids.

My advice find a doctor who has dealt with Periodic Fevers so they

know the steps. It sounds like maybe this doctor can help you.

Hang in there. As a parent you feel completely out of control. We

comfort them the best we can and get them through it. It has helped

me alot to post on this web site because you are not alone. I would

love someday to have Fran organize a reunion of sort to have people

meet.

Tammy, Mother of Clay 3 (HIDS)