Re: Been a While! Can anyone help a local mom?

[Guest guest]

, Weird -- I just saw your name on the list of Dr. H appts

from this summer (I was looking up someone's email address) and was

wondering how things were going.

Re failure to thrive - MAGIC has a simple pamphlet on it, but since

failure to thrive in and of itself is more typically a GI issue

which can affect height but not a growth disorder itself, no, there

isn't a failure to thrive division. However, there are several

really good failure to thrive listserve groups. One is called

failuretothrive if I recall.

You can find out if the child is SGA by contacting them and finding

out their gestational age and birth weight and length. Write me

more.

I am so sorry your local doc was such a dork. Really sad. I

remember being in your Dr. H appt, and her talking to you and your

mom, and finding out that you were born SGA, and if I recall, maybe

your mom was too????

Write me privately with questions. Katy can also find a local endo

in your state, but glad you are seeing Dr. H in Dec -- maybe she

knows someone too.

Bye for now. Jenn

>

> Hey guys! I know it's been a long time since I've posted. Amelia

> and Crosby are doing well. I learned so much at convention. I'm

so

> glad I went!!!! Dr. H said that Crosby did not have RSS but he

does

> have severe SGA and she mentioned a g-tube but said we should try

> periactin first. So far I haven't noticed a difference witht he

> periactin but it does seem to give him diarrhea. Has anyone else

had

> this problem? When I mentioned that Mimi also had SGA she asked

why

> I didn't bring her too. I was so in the dark. I brought Crosby

> because I thought he had RSS. I knew that both of my kids were SGA

> but I didn't realize that SGA kids need treatment too. My dr's

> (until now of course!) have been very unconcerned with thier lack

of

> weight and growth. We had our first appt. with a ped. endo. soon

> after we got back from convention. He said ALL the wrong things

and

> to top it off, he stuck me with a 500.00 bill for tests that may

have

> been unnecessary. He said not to worry about my kids not eating

> during the day but to make sure and offer them something

they " can't

> refuse " (ie cookies, ice cream, etc.) right before bedtime. So my

> kids should live on junk food? His reasoning was because children

do

> thier growing at night while thier sleeping. That sure sounds

> healthy. He ignored the fact that Crosby was on periactin. When

I

> asked if Mimi should be on it he avoided my question. He said

that

> Mimi would not qualify for GHT and when we came back for our next

> appt. we would start Crosby on GHT. No mention of catch up

growth.

> No concern for hypoglycemia. Not only that but we were treated

very

> rudely and as though we were inconveniencing them. We will not be

> going back. We have an appt. to see dr.H in Dec. After that I

will

> start looking for another ped. endo.

> So, enough about me. I am trying to do some research to help a

local

> mother. She is 26 yrs. old and has four kids. Her youngest is 21

> months old and has been diagnosed with hyperlipidemia,

> hypertrygliceridemia, GERD, and failure to thrive. The

specialists

> that she has seen thoufght that the cure for her not

eating/failure

> to thrive was to fix her GERD so they did a nissen fundoplication

(a

> stomach wrap). It didn't work and now she has a g-tube. Does

this

> sound familiar to anyone? Could Dr.s be missing severe SGA or

RSS.

> You can't really tell from her pictures in the paper. If you want

to

> check out her story go to www.blufftontoday.com and look for the

> cover story for Oct. 18th. We live in a pretty small area and it

> wasn't until I started doing reasearch on my own that I found out

the

> my kids had SGA, so I know the area dr.s, though well meaning,

really

> don't have a clue when it comes to something rare. Any info or

> feedback would be helpful. Also, does MAGIC have a failure to

thrive

> division? and does dr. H treat failure to thrive paitents? Thak

you

> all!! It was so nice to put faces with names at convention!

Love,

>

>