Well room / Sick room at Pediatrician?

May 15, 2002

Dear other parents,

How do your pediatricians' offices handle your immunedeficient children when

well and when sick? On 2/28, we had to wait in the hall for 45 minutes with

beginning of croup while they tried to figure out where to put .

Can't ever be in the sick waiting room, and too sick to be in the well

waiting room. They finally put him in a well room at the end of the day.

If it had been earlier, I don't know what they would have done. Then they

proceeded to give him a non-therapeutic amount of racemic epi, and 4.5 hours

later he had to go by ambulance to the Children's Hospital for severe

respiratory distress.

It was a very scarey for 3 days!!! It took 5 racemic epi treatments until he

started breathing better, in spite of very high fevers that lasted a week.

He was diagnosed with Strep A, Influenza A, Croup and Bronchitis and

possibly asthma attack initially. 4 days later and now a sick mom, we came

home. I'm obviously still traumatized by this last episode.

Anyway, that's the same doctors' office that told me that the swollen

lymphnodes in 's neck for over a year was not a problem. When I went

to the oncologist at the Children's Hospital last October on my own, they

immediately knew there was a problem. So, 2/28 was the last visit to the

old group (which happens to be fairly well respected here), and we switched

to docs referred to me by the Chief Hematologist, and affiliated with

Children's Hospital and it's very competent ER.

The new doc is great, however, one large waiting room with signs saying sick

and well and rude parents with obviously sick kids not occupying one of many

vacant seats in sick side. We've now been told to ring the bell and get

taken straight to a room so we can wait our turn there, which is fine, in

theory. HOWEVER, they don't have separate sick rooms and well rooms. G-d

only knows who had what in the room prior to us being in there. Yes, I've

turned into a germ freak out of necessity, because I don't enjoy seeing my 3

year old struggling just to be able to breathe or hold his temp below 104,

etc.when he gets so ill suddenly. I really dislike going to doctors'

offices with him.

It's frustrating, but 's in very good health this week and growing

very fast ever since IVIG started in November.

We're counting our blessings!!!

IVIG next Tuesday again (every 2 weeks) and then Wed. we'll see Chief GI doc

to try once again to figure out his chronic diarrhea problem (Milk-Soy

Protein Intolerance = MSPI? Celiac? CF test still to be done)

Glad to have people out there who understand all these issues!

, Tired Mommy to (3)CVID/Hypogammaglobulinemia

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May 16, 2002

> How do your pediatricians' offices handle your immunedeficient

> children when

> well and when sick?

Kody always gets taken straight back to a room. Our doctor's office has

certain examining rooms that they use for well child visits and baby

well child check ups. That is where Kody always goes. I've asked and my

office always disinfects after every patient no matter what room your in

anyway. They even took all the toys out of the waiting rooms so that

germs aren't passed that way too. I can honestly say that Kody has

never come home from our doctors office and gotten sick. He has gone to

the grocery store and gotten sick later, and many other places, but not

our doctor's office!

Diane Mom to Kody

May 16, 2002

Our Peds have two offices in two different towns. For the one with one big

room, back when was more vulnerable, they would either send us right to

an exam room, or if none was available we would get to wait in one of the

doctors' private offices (where they do paperwork, no patients are ever in

there).

The other office has separate rooms and when she was too sick to go in the

well room (sick room was not an option), if we couldn't go right back to a

room, I'd stand in the hallway near the front desk (sort of on the way to the

exam rooms). I never asked permission to do this, I just did it because I

could see it was my only option and they made sure to get a room for us ASAP

so we wouldn't be hovering too long!

I cannot believe some of the rudeness some of you have encountered. It's

shameful that people can act that way. I'm so glad that hasn't happened to

us. I think now if I saw a sickie in the well room I'd probably go tell the

desk and make them intervene, as I would figure hearing it from another

parent would have no merit for such a rude person anyway. At least based on

what has happened to some of you!

Oh, and by the way we also NEVER touch the toys, even in the well waiting

room.

(mom to , age 3, polysaccharide antibody def)

May 16, 2002

Our ped doesn't have a sick/well kid waiting room. It is just a giant room

for all peds, internal adult medicine and adult urgent care patients! I,

too, hate going in because I know that Rebekah will get exposed to someone

else's germs.

These are things I've tried. I sit in the internal adult medicine waiting

side and tell the receptionist desk where I am, I make Rebekah and any other

children I'm with wear their mittens in the waiting room and in the exam

room, I ask for a room that hasn't been used that day or in a few hours, I

call to see if it is busy before we do the walk-in clinic, and I've asked to

be taken directly to a safer room when it is clear that the waiting room is

sick with kids with the flu. And, absolutely, the kids never get to touch

the toys in the clinic!

Once, I even came with a less urgent problem (probably ear infection rather

than a full-blown illness), heard the huge number of sick kids at the

walk-in clinic coughing as soon as I walked in, and turned around and walked

out! I decided that Rebekah could use motrin overnight for her ear pain and

we would see the doctor the next morning in regular clinic hours. Once I

even chose to go to the more expensive after-hours urgent care that sees

adults and children because they were less busy and had fewer sick CHILDREN

who leave germs everywhere.

Does all of this help? Yes, Rebekah has gotten fewer doctor office

infections this year than last year. I'm still working with my doctor's

office to arrange for Rebekah to avoid the waiting room thing. I would

start calling when your child is not ill and ask to speak to the doctor or

his nurse of the head of the clinic to discuss how to better protect your

child in the future. They can put notations on your child's chart about how

to handle him/her when he/she needs to come in. Keep pushing them for a