Been a While! Can anyone help a local mom?

[Guest guest]

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,