Someone New ( Long Post/ Long Winded)

[Guest guest]

Hello To All,

my name is , and my son Easton was recently considered to have

(never really diagnosed) with . For all intents and purposes, we

are going to assume that that is the condition that he has until

something changes. I have been in the medical field for 10+ years

(Medical Technologist degree, radiographer and currently Special

Procedures/ Cardiac Cath technologist), so I know that that is the way

it goes sometimes.

Easton started having high grade fevers at 51 weeks of age. While no

physical symptoms (ear infection, rash, tonsilitis, etc.) appeared, he

would run a fever (103F-106F) at the drop of a hat, and then have a

seizure. After 8-9 seizures and finally a trip to a neurologist

(military takes some time to convince occassionally...) it was deemed

Febrile Seizures. Prescribed Ativan for when fever started. Had tubes

placed in both ears (infections - couldn't hear out of right ear)

about a month before 2nd birthday. Fevers went away. At the 6th month

check-up, they were coming out, which was to be expected. The next

month, Easton was diagnosed with leukemia, after week long fever.

Treatment for 3 yrs and 2 months went pretty well. Hospitalized every

13 months for some thing different each time (blood transfusion

reaction, high fevers, meningitis, high fevers.)

He has been off treatment for 20 months now, but we have been dealing

with high fevers (up to 106F) every 2 -4 weeks for the past year or

so. Always given antibiotics, even though all cultures, both throat

and blood, come back as negative. Fevers pass in 4 -5 days. He has had

his IgG evaluated and given a IgG tranfusion last summer, but before

all this really became noticable as a pattern, we just thought it was

his immune system catching up from the chemotherapy.

In July, he was treated for an ear infection while at Camp Rainbow

(blood cancer camp for kids.) Ear drops prescribed, and did fairly

well. But started another fever over the weekend (July 28-30.) He was

seen by his pediatrician/ Emergency Dept who referred us to an ID

physician.No antibiotics prescribed, yet fever passed. This past

Wednesday we had our appt and after describing what you just read

(much more detail though...sorry, long winded)he brought up . He

printed out a Journal article, which was on the mark for Eastons signs

and symptoms. Prednisone was not a great plan as Easton was on

steroids for over three years during chemotherapy. Tagemet was

mentioned/ suggested. It came out as " this might work " , which we

understand. Seems to be little information on a definative cure. So I

started him on 800mg/ day. He had a low grade fever the night before

he started the Tagemet. Even though he was due a fever this weekend,

the fever never got higher than 100.1F, and lasted one day. Not likely

the result of the Tagemet, but that would be nice.

Finally....I haven't had a chance to sit down and start reading all

that is available on this sight. But from what I have read, there is

so much more testing that others have been through. All sorts of

conditions to rule out. Some going from unknown etiology to ,

then to something else and back to or unknown. We rode through

the leukemia, so this looks easier at the moment. We know the feelings

that some are going through or have gone through. So, all the best.

I will be stopping in to see what is new here as I can. Please don't

be offended if I don't respond to questions/ comments for a few days.

Thanks for your time.

Father of Easton, 7 years old