Informative Dr. H appt. ~LONG~

[Guest guest]

Hey everyone,

I just wanted to let all of you know that I am soooo behind on

reading the posts, and I plan to get to them at my first

opportunity. In scanning I saw some posts about Ian and

Salem that I need to read, and I am sure there are many I will

respond to. I just wanted to let you all know that we are still

here, but just ever so busy. We had our Dr. H appointment yesterday

and it was an all day thing. We flew from Ohio to New York in a

whole day and it proved to be very tiring on , Mom, and I.

But, you know, is only 3 1/2, and I could not expect any

better behavior from him. He was absolutely wonderful through the

entire trip. And, the poor boy had to get up at 3:30 am and was in

such great spirits and he was so good the whole time. At the very

end of the trip he was so tired and ended up sleeping much of the way

back, but he needed it as he was getting a little slap happy and then

grumpy, but nothing you wouldn't expect from a 3 1/2 year old. He

actually did better than what I would have thought. He never ceases

to amaze me in what he can tolerate.

Okay, so this is becoming too long already, but just to let you know

what Dr. H said about him.....First, he is still way too chunky. She

is further reducing his tube feedings to where he will be fed for

only 12 hours overnight from 8:30 pm-8:30 am. She is putting him on

Zelnorm to hopefully get things moving in his system better. He

still gags every morning and even spits up the majority of the

time. Even on J tube feedings he is doing this! She is hoping the

Zelnorm will keep things moving in his belly a little better and also

aid in constipation since he has been having trouble with that. She

is having us resume his GH and says she is wanting that to slim him

down, but also have a bigger appetite to eat better while he is off

his tube. He only eats baby food right now and she wants him to

start eating other things. has such trouble with chewing

things and we are working with a therapist right now to get him to be

able to manage foods better, but it is a SLOW process. But, we will

try steamed veggies, and hopefully other things. She suggested

tuna. I can't see him eating that, as he can't really even manage a

piece of macaroni (which she also wants him to eat), but we shall

keep trying. She looked at 's labs and they are indeed showing

that he is insulin resistant and GH resistant. I am not clear

exactly what this means for , but I think she said that

slimming him down will help both of these as they are tied to one

another through Leptin levels which is tied to the glucose in your

body. So, I am assuming that if we can get the insulin resistance

under control, that that will help bring down his high IGF and DHEA

levels. I am so confused on all of this and if any of you have a

grasp on these things, feel free to offer advice or

direction!!! ;o) I think my biggest thing right now will be to get

him slimmed down and to stop giving him so much sugar. We will be

seeing her again in April as she says she needs to keep a VERY close

eye on him right now. And, she stressed that as only Dr. H. could,

and when she says these things, you know it is a big deal. So, I

will do exactly what she has told us to do and pray that he starts to

drop all the fat he has on him. Oh my gosh, she pulled up some fat

spots and it is ridiculous how much he has. Her and I discussed what

looked like at our first visit with her. As some of you know,

was severely malnourished at 17 months of age, even though he

was on a feeding tube. She was saying that this tends to be the

case. She says they go from very skinny and over a period of time

she says it is like someone blows them up full of air. You know, it

is such a fine and hard line to manage. For so long, needed

so many extra calories just to gain weight, now he needs to slim down

to keep him on a healthy path. Ugh, it is so frustrating and hard to

know what to do, but that is why I have her managing his case. I

just wouldn't get this from local doctors. They are all saying how

great looks and, blah, blah, blah. No one has ever mentioned

that he is too big or anything!!! Nothing about the blood sugar

issues or anything. It is amazing. Gosh, where would he be if I

wasn't seeing her? Too scary for me to even think about since we are

dealing with such complex issues right now! Oh, she is also having

me add Benefiber to his diet to help with constipation, too. He

isn't getting any fiber from his formula, so she wants to try him on

this. She said no to trying Periactin right now since is

still having trouble managing his tube feedings (Referring to the

gagging and spitting up). She is hopeful the Zelnorm will help.

Does anyone give their kids Zelnorm? I was talking to Earley

this morning and she was saying that she thinks Max Z. is on it?? I

was thinking someone was, but wasn't sure. Anyone with advice on

this and how it effects the kids and if it really works, would be

welcome info!

Well guys, sorry this post got to be so long. I hope you all don't

mind me sharing all of this information with you. I am very worried

about the insulin resistance. I wanted to let you all know that it

is a real potential problem for our kids if they get too big. And,

it is so hard to know when that is for each child, as they are all

different. Dr. H. says that weight for height should be between the

10th and 25th percentile. Well, she gives that window for a reason.

Each child will be different. One may be at the 25% and be fine, but

another may be there and be too big. That would be . The 25%

is too big for him. So, I just wanted to let you all know how very

different each child will be and to know that insulin resistance is a

real issue!

Jodi R.

Mommy to Chunky-butt, as described by Dr. H!!! ;o)