's meeting with Dr. H.

[Guest guest]

The first night we arrived in Oak Brook, after we checked

into our hotel room, we went down to the conference

registration table. We discovered there was a large

banquet hall filled with Magic children and their families,

clowns, balloons, face painting, free snacks and drinks,

and information booths set up by numerous drug companies

and other Magic Foundation sponsors. In the midst of all

this fun and commotion, in the corner of the room, there

was a doctor with an examination table, scales, and

various measuring devices, and a small crowd gathered

around. I recognized Walbridge's name on her tag;

she had a clipboard with a signup sheet for free consultations

with Dr. H.! This was a pleasant surprise; we had expected

to hear Dr. H. speak, and perhaps meet with her, but we had

no idea she would be doing this. We put 's name on

the list. We waited around a long time to see her -

we didn't realize she would be doing this during the

entire conference. But we enjoyed chatting with other

RSS families in the meantime, and had fun playing

with the other kids. When we finally got to see Dr. H.

around 10PM, the hall had mostly emptied out, and the

janitors were starting to clear the tables away, but she

was still there working (I don't think she even stopped

for dinner).

We've heard the complaints here about Dr. H.'s " bedside manner " ,

but having been forewarned, we actually appreciated her

straightforward honesty, her obvious concern for the

children, and how she treats them age-appropriately rather

than as little babies. First she measured and weighed

; he actually lost a pound recently (down to 29 pounds),

probably because we took him on a week long camping trip

without his feeding pump. But he's not nearly as skinny as

some of the other RSS kids who don't have feeding tubes or

aren't on periactin. Dr. H. suggested we reduce the amount

of Pediasure we give him at night through his tube (from 4

cans down to 3), and give him more periactin during the day

to encourage him to eat. She said his periactin dosage was

way too small; she wrote down her dosage formula on a

napkin for us to take back to our doctor. She said that

should definitely be on growth hormones; after hearing

the presentations the next day, we're convinced of that, too.

She also noticed that his Mic-key button is too small:

has grown quite a bit since we last saw his GI doctor.

Dr. H. did give us one bit of disconcerting news. After

talking and interacting with for a while, she told us

that she suspects he has ADD. We've seen some signs of that

before, in various social settings, but none of his teachers,

caregivers, therapists or doctors have ever mentioned ADD.

This could be another example of Dr. H.'s " honesty " ;

perhaps all the others have been too timid to raise this with

us. However, this isn't really her field; as Dr. H. suggested,

we'll take to see some child behavior experts at

Stanford.

After the meeting, a nurse took down all of 's vital

information in a notebook computer; apparently they're making

a spreadsheet of RSS patients. Dr. H. also asked us to send

her a copy of 's medical records, and she would consult

with his doctors out here regarding his future treatment.

Wow, that in itself was worth attending the conference: we

now have the country's top RSS expert as part of 's

medical team!

Unfortunately, got sick that weekend: after

swimming in the hotel pool, he came down with an ear

infection. It was a Saturday night, we were a couple

thousand miles from home, and we didn't know any doctors

around there... except one. The Bingo Bash was just

finishing up, and Dr. H. was over in the corner putting

away her equipment, after another evening of consultations.

I timidly approached her ( " I know this isn't what you're

here for... " ), and she very kindly examined 's ears

and prescribed antibiotics for him.

Now we know why so many people on this list rave about this

doctor, and travel such great distances to see her in New

York. We are also thankful to , who obviously did a

lot of work to coordinate not just the conference but

also Dr. H.'s consultations.

- Joe, father to B., age 5.5, 29 pounds, 37 inches,

GTube, periactin, GH soon, possible ADD, starting kindergarten

in 2 weeks!

[Guest guest]

Ditto!!! We had no clue Dr. H would just be seeing everyone possible!

Storm had a lot of fun playing with while waiting in line.

Carmen

[Guest guest]

Joe - What an absolutely wonderful story, and written so compassionately. You

are right - no matter Dr. H's weaknesses (and we all have some), she still is a

dedicated physician and holds strong in her beliefs. Those beliefs may cross

paths with us sometimes, but I would rather have a doctor that is strong-minded

and deal with the clashes than a weak doctor who can't make up their mind.

S.