Will was in the hospital, questions

[Guest guest]

In a message dated 5/6/2005 2:24:33 P.M. Eastern Daylight Time,

ivygirlz@... writes:

Has anyone had anything

similar happen to them?

I have never heard of anything like this. But nothing surprises me with our

kids. Maybe someone on here knows. I just want to say I am sorry for his

pain, poor little guy! Poor mommy too. It's so hard to watch our kids not feel

well and can't help them. I'll pray for your family. Keep us posted.

Janet, Mom to Brittany, CVID, age 14

[Guest guest]

Well, after a LONG few days - we are FINALLY home.

On Wednesday Will started having trouble going to the bathroom -

every time he would try to pee, he would hold his diaper,with one

hand - cover his mouth with the other and cry " Ow Ow Ow, MAMA

MAMA " . So, I brought him to the peds office - they TRIED to cath

him there - but, even tho the tube was " in " (or so they said) no

urine came out....SO they sent us home with a bag on him to catch the

pee. SO, when he FINALLY peed, I brought the specimen back to the

docs (this was at 5:30 now) and left him with my neice and mom (my

mom knew he was at the doctors - but not WHY). When I get home, I

hear him SCREAMING like a madman - so I follow his voice and there he

is in the bathroom naked with my mom - he's jumping up and down and

wailing....my mom says, " I think he's gotta poop and he can't

maybe? " I said, NO - he was having pain when he peed earlier

today.....and she said, " OH, well - he DID grab the front of his

diaper too - I just thought it was poop related, SORRY "

SO, I call the doc - he says urine dip was clean - culture would take

a few days - and to try some cream on the tip of his penis after a

warm bath - so I tried BOTH and gave it a few hours - and he just

kept getting worse and worse....So I called back the doc and he said

to go straight to Boston - and that, with his history and the

complement deficiency, they would be the best avenue for us.

SO, DH was working and Will was beserk with the pain - so bad I

couldn't put him down - so my parents packed up everything and off I

went to Children's. We were there by 9 and admitted by 3 a.m.

His Xray and U/S of the abdomen both looked normal - and they did

ANOTHER catheterization - and THIS time they got urine (unlike his

first cath at the peds). He was wild screaming and holding

himself...it killed me. It was then that I noticed a weird rash on

him.....and as the night went on, it got worse and worse....it looked

like he was scalded with very hot water.

FINALLY, the next day they did labs at like 1 p.m. - they did the

basic CBC with differential and then they tested him for the Parvo

virus (which results are not back yet). The CBC w/diff was

relatively good - white count was normal (but on the low side) the

differential was a little off (lymphocytes, monocytes and neutrophils

were all out of normal limits, but not by much), but nothing earth

shattering.

They said they didn't know what was wrong with him....and they gave

him Peridium to help with the pain while peeing - and he HATED the

taste of it - and wore a lot of it - and it stained him yellow - but,

after a while, he stopped screaming when he peed. He drank

15....yes, you heard that right 15 8 ounce bottles of juice from 9

a.m. to 11 p.m. !!!!!! I was so nervous about this because he NEVER

drinks more than 4 or 5 TOPS! SO, they said that, as long as he was

peeing it out - that it was okay.

They decided that, given Will's history - they would keep him another

night and wait til everything was better with the pain and

such......Last night was rough....the rash got worse, it was

EVERYWHERE horribly -it looked SO painful - but he never really

bothered with it. He didn't sleep that great - he was up at 3:45

a.m. and I got him to go back to sleep for about an hour - and then

he was up for the day at 5 a.m.

Here's where my question is.....

Their thought is that it was a VIRUS that also affected his urinary

tract - which I personally have NEVER heard of - but I am sure it's

possible. They said that, the rash and the pain while peeing - with

no obvious signs of bacterial infection point towards something

viral. Has anyone ever heard of that?

When he woke up this morning, it was " Official " he is SICK

again.....he's congested, coughing a bit, not bad tho, and the rash

is still there.

He was stable, and I asked to go home....and they let us go. They

said to keep a close eye on him and if ANYTHING unusual happens, to

call our doc right away.

Our concern is that these infections (even though they aren't life

threatening) are coming closer and closer together and they are now

much different in nature than before (most were just URI/Sinus/Ear

infections). My heart was SO sad for him, I have NEVER seen him in

such pain....and they wouldn't give him ANYTHING but Tylenol for the

pain because narcotics can cause urinary retention....great, eh?

SO, we (Children's and also DH and I) have spoken with Will's

immunologist and we are seeing him on Monday at 4, as well as seeing

the pediatrician on Moday at 9 a.m.

There has to be a better way to help him than just 'waiting' for him

to get sick again. It just is SO not fair. Does anyone have any

ideas or suggestions on what we can do? Has anyone had anything

similar happen to them?

Thanks,

Stefani