introduction: Amber & Wyatt

[Guest guest]

Hi everyone,

We've been bounced around from doctor to doctor, hospital to

hospital, for 6 months now with our youngest son's illness. We have

been repeatedly diagnosed with an " unknown virus " and told it should

be considered " highly contagious. " However, our baby is the only one

in the family who is ill, and it is very scheduled.

Wyatt, now 14 months old, had his first episode at 8 months (June 1,

2008). Each time, the exact same series occurs. He has a crusty nose

right before the fever begins, followed by a high fever (102-105), a

body rash develops on his torso and/or face, irritability, excessive

crying, and sleeplessness. His soft spot on the top of his head evens

out, so he may be having pressure - he does pull at his hair a lot

and hit his head with his hand.

These episodes occur in cycles, every 18-24 days, lasting 5 full days

before mysterious recovery. And just like a menstrual cycle, I can

tell exactly when he will get sick again. On Sunday, I told my

husband Wyatt would be ill soon, it was time for his cycle. Sure

enough, Sunday night, the fever began. It was 102 Monday, 103 today.

We are taking him into his pediatrician again.

A new symptom appeared last night, he vomitted all over his crib

clear pedialyte all night long, but it is brownish blood tinted. Then

he vomitted this morning on my husband when we tried to feed him. He

also is constipated during each of these episodes, when he is

normally very regular every morning. He is also completely healthy

and happy outside of these episodes and cycle. When the motrin

reduces his fever, he smiles and plays.

I thought it might be environmental, but his last episode occurred in

our 3rd week out of state at my in-laws last month for Thanksgiving.

This episode is just in time to clear on Christmas day hopefully (day

5).

The only vaccine we ever allowed him to have was 1 dose of Dtap at 3

months old, which he developed hives immediately afterwards and we

were told not to worry. He has been extremely sensitive to sounds

since birth and startles very easily.

He started crawling at 9 months, a month earlier than our older son,

but he still isn't walking at 14 months, our oldest walked at 13

months. The doctors do not seemed concerned at this point so I'm

trying to focus on the fact that everyone develops at different rates.

He has been in the ER a few times and checked for strep (pre-test

they were all certain this was it because his throat has a white

coating and is irritated), RSV, & uti - all negative. We have given

him one 10 day round of amoxicillin so please the doctors that it was

not a bacterial infection. It is like pulling teeth to get anyone to

help in diagnosis here as we are on CA state medi-cal (my husband is

a grad student and they make the state cover families).

When I found online, it matches him to a T and it scared me. HE

also has the facial features of the Marshall syndrome, but it may

just be our gene pool because our other son who is almost 3 looks

like that mostly too. I don't know if I am strong enough to do this

for the next 9 years. I'm very happy to have found an online

support group though and I'm hopeful that we will receive a diagnosis

at some point, although I have to say, it looks pretty hopeless since

if this is what it is, there is no cure or acceptable treatment

(prednisone has horrible side effects, my uncle is on it for sinus

problems).

Merry Christmas to you all and if you have any advice or suggestions,

I welcome them! I'm in the frustrated phase of trying to help our

child right now, hopefully there is help out there. If this is what

is ill with him, I'm worried about years to come when he will miss

every 4th week of school....my mind just keeps running.

Amber

Wyatt - born 10-11-2007 (possible )

Sutton - born 2-23-2006 (no illnesses)