introduction

[Guest guest]

Hi. My name is Whitney and my son is three. He began having

very high fevers >106 every two weeks lasting 5-7 days a little over

a year ago. (july 07) His only complaint/symptom with his fevers is

that the top of his abdomen directly below his ribs hurts. After the

fifth fever in less than two months I was referred to a

hematologist. Sam has the Beta Thalassemia trait so his hemoglobin

stays around 10 (14 is normal for a healthy boy) regularly. However,

the hematologist said that the fevers were coming too closely

together and were too high so they were taking a toll on him. He

dropped to an hgb of 8. Very lethargic, dark circles, pale skin,

sleeping forever. His platelets are elevated, and during the fevers

his white count will be around 14,000.

When you get a puzzled hematologist, you get the " works " in terms of

obscure blood tests. Nothing came back, except positive for Crohns

titers and antibodies for salmonella. So we began loads of

antibiotics and steroids for the next five months. We also saw a ped

GI doc. Sam had an upper GI, meckels scan, colonoscopy, bone marrow

aspirate, spinal, bone survey, and abdominal ultrasounds. He looked

ship shape. In March he had three weeks of Cipro and afterwards he

began itching all over his entire body. He quit sleeping because he

scratched constantly. I thought maybe he had a full body yeast

something from all of the months of antibiotics. No one agreed, but

my pediatrician prescribed diflucan anyway. I also made an

appointment to see an allergist. The diflucan cleared the itching,

but the allergist discovered fifty bagillion food antibodies. They

were all relatively low level 3 and 4. There were so many that the

allergist said it was impossible to try an elimination diet unless we

wanted to do water and chicken for months. I feed him everything and

he's fine.

The problem is that the hematologist now believes that the fevers are

due to some inflammation the allergies are causing--allergies that

the allergist said to not even worry about. While on vacation for a

month visiting my mother, my son got sick twice. I took him to a

pediatrician there and he said that he knew what was wrong with my

son. He said he had two other patients with this disorder and that

it was . He told me to try the single dose of prednisolone.

Sam got a fever yesterday at 3 am. I gave him a dose at 8 am. It

was gone by 6pm. The problem is that my son is psychotic on

steroids. Does anyone else have this problem? NO sleeping, and

emotionally unstable even with one dose.

has never had any throat problems or mouth sores, but he does

have constantly enlarged lymph nodes on his neck and abdominal pain.

What do you know about and children who complain of abdominal

pain? Would an endoscopy uncover anything? Does taking the tonsils

out work for children who never have throat problems, just

abdominal? Also, what does this word inflammation mean? I keep

imagining things red and swelling inside, but my husband tells me

thats not it. What is it in terms of this disorder? Last question,

does anyone else's child ever have the lowered hemoglobin because of

too much strain on the system from the fevers?

I'm relieved to find individuals with stories similar to mine. I've

felt twilight-zone-alone for a year. Its awful for anyone to have a

sick child, let alone a sick child with the words like 'mystery'

and 'unexplained' and 'unknown' attached to it. With fevers that

come like unstoppable trains, there aren't even moments to forget

about it and pretend things are okay.

Whitney (mother of samuel 3 yrs old. Fevers for over a year)

Texas