Remember me?

February 10, 2006

Hey there everyone! I have just spent a few hours reading back

through the last couple of days worth of posts. Things have sure

been busy with you all since I was last able to check out the site.

Our computer died. We have a new one now AND high speed internet so

I am getting back into the swing of things! I see quite a few new

names!

I believe my husband stumbled across the site and posted about Mimi

being in the hospital over Thanksgiving. She got a virus that just

wiped her out. The reason I mention this is because something about

it still confuses me a little. Our Pediatrician was concerned

because even though she was dehydrated when she came in, he said he

has seen kids with worse dehydration in much better shape. She was

so lethargic she couldn't even walk. Her BS was normal and she was

spilling ketones. That's really all the info I have. After a night

on fluids she was much better and allowed to go home. She continued

to have diarrhea for several days after but that was probably

because of the strong antibiotics they pumped her full of. Is this

just normal for SGA/RSS kids to have a sickness affect them so

severely? Our ped says he can only figure that she really had no

reserves to fight the virus with. He kept hoping she would produce

a fever to fight it off but she couldn't. Maybe it's nothing but it

keeps bugging me.

We took the kids to NY to see Dr. H in December. It was a long

visit (5 1/2hrs) but since we traveled from South Carolina we didn't

mind. She said that Mimi looked good and sent us with a long list

of tests to have done before starting her on GHT. She said Crosby

needed to gain some weight. We had tried Periactin several times

before but it gave him diarrhea so we stopped giving it to him.

When she heard this she said something was probably wrong with the

bottle I had and to get another and try it again. It worked! He

has gained almost three pounds since our visit! I can't believe

it! She also refered us to a new endo. I had posted before about

what a joke the endo we saw in ton had been. He really

seemed to know nothing about how to treat sga/rss, at least not the

way dr. H does. Among many other things he said it didn't matter

what or how much my kids ate during the day, what was important was

what they ate right before bed so I should offer them something they

can't refuse such as cookies, icecream, cake, etc. I agree that

calories are important and at certain times we do what we have to do

but this really sent up a red flag with me. He also said that Mimi

was too tall for GH (not true) and he would have already started

Crosby on GH without any testing, bone age, or concern for catch up

growth. When I told Dr. H about this she rolled her eyes and I

could tell she thought he was nuts. I also asked him if he had any

other RSS or SGA patients and he said yes in a way that made me

think he was lying. Are there any members here from South Carolina

besides me? Also, on a side note, while in Toys R Us in Savannah

Ga. recently I saw a little boy who quite obviously had RSS. Is

there anyone from Savannah on here? So Dr. H reccomended another

Endo named Dr. Bolbey. As it turns out she is in the exact same

office as the bad endo (they share exam rooms!). I asked Dr. H if

she thought his feelings would be hurt and she said - " Probably, do

you care? " Good question. I said no. She said good. So we go to

see the new endo on the 24th. Before moving to ton she was

in the same building in NY with Dr. H and knows her personally. She

has not treated RSS/SGA kids before but was fascinated with Dr. H's

work and according to Dr.H is very excited to meet us and be able to

work closely with her. We will go back to NY once a year since that

is all we can afford, but I am comfortable with that. The hotel was

the most expensive part of our stay. We stayed at the guest

residence at the hosp. It was close to Dr. H but far from

everything else. Does anyone have any suggestions about other

places to stay? Also, had anyone else had to work with Dr. Mercado

in Dr. H's office? She saw us before Dr. H came in and took lots of

incorrect measurements and wrote a lot of incorrect notes in the

kids charts. It took Dr. H about an hour and a half to correct it

all.

I have signed both of the kids up for a toddler gymnastics class and

they love it! Crosby is such a little monkey!

Like I said it has been a while since I last posted.(October maybe)

Have I missed anything BIG? I hope everyone is doing well! I hope

my post isn't too all over the place to understand. I'm not exactly

a linear thinker!

Love,

February 10, 2006

wellcome back

glad to have you back.

cara mom to jacob

crosbysmommy wrote: