Re: G.I. testing

[Guest guest]

Debbi,

We go through the same problem with Storm,(5 in Aug.)

He eats a few bites then complains of tummy hurting, or

lays belly down on the couch. (Never really thought of

that happening because of the belly hurting. The ped. put

him on Zantac to help this, so far not much help on tummy

aches, but he hasn't been throwing up as much.

Hope this helps!

I say come to the convention any way!

Carmen

[Guest guest]

Hi, Carmen!!

Thanks!! Fortunately Jake doesn't throw up, but I

will ask the G.I. about Zantac (the " burning chest "

thing is new).

Debbi

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[Guest guest]

Debbi,

If you could not guess, I will tell you that we have been there/done that as

far as GI testing goes. If you have any questions, just send them my way.

Chances are, Max has been through whatever you are going to do for Jake.

And, yes, Max has displayed the same symptoms for years. I can safely say

now, however, that he does not have reflux. He has been tested and retested

and there is no indication of it any longer. I think the pains he now feels

are more from this reaction he has to strep. But it used to be because of

reflux and dysmotility (food not moving through his digestive system fast

enough). That is what Allie has now.

Max has a milk allergy - specifically to casseine, a milk protein. I am the

one with the lactose intolerance. It is so bad that I cannot even eat

yogurt, which most people can. The tricky part for me is that sometimes my

stomach WILL tolerate the stuff and at others it won't. I avoid dairy like

the plague because of it. There is not too much more embarassing than being

in a restaurant and suddenly being overcome with stomach pains.

Please feel free to email me either via this site or privately for more

about the GI stuff if you want to. You know I am always ready to help.

Jodi

G.I. testing

> Hi, everyone!!

>

> I'm back receiving the daily emails because our move

> is finally complete and because I want to keep abreast

> of the info everyone provides. BTW--(thanks,

> !), don't worry everyone, I don't even know

> where I packed my herbal remedy books!

>

> I'm glad everyone who went had a great time at the

> convention! Maybe next year we'll go--but I almost

> feel like we wouldn't be welcome because Dr. H. didn't

> think Jake has RSS! Your thoughts?

>

> As most of you know (and there are a lot of new

> people-welcome!), Jake's working dx (from a CHOP

> Geneticist) is RSS. And, we are now going through

> extensive G.I. testing because his eating has pretty

> much slacked off and his weight for the past 8 months

> is just 1 lb. He has grown 2 1/4 inches, however,

> since last August. So, he is having a lactose

> intollerance test next week (Jodi, isn't Max lactose

> intollerant?) and an upper G.I. series (of x-rays)

> within a week or two. He complains of tummy aches

> while eating (and then, much to our dismay, will stop

> eating!). He'll say, " I don't feel so well! " and then

> go lay belly down on the couch. Also, he'll say that

> (certain things) " burn his chest " .

>

> Reflux? Anyone have similar situations with your

> kiddies at age 5? Anyone go through the extensive

> G.I. testing, too? He had blood work done (twice) and

> the metabolic acidosis possibility (that I previously

> mentioned) has been ruled out. Everything else (even

> stool tests) is normal.

>

> Anyway, we see the Endo in a few weeks. So, I think

> at this visit we'll be learning if he recommends gh

> shots for Jake.

>

> Well, thanks have a great day!

>

> Debbi, Jake's mom, 5 yrs., 5 mos, 27 1/2 " , 29 lbs.

>

> __________________________________________________

>

[Guest guest]

Hi Debbi,

You and Jake are DEFINITELY welcome to come to the convention. The MAGIC

Foundation is for families with growth disorders. We have " zillions " of

them. Whether or not Jake has RSS, he does have a growth disorder. That

means you face along with the rest of us physical, medical, and emotional

challenges.

The convention is an opportunity for families to give each other support,

share experiences, and learn about medical options. These are all areas

where your experience and knowledge would be of value to other families and

theirs would be of value to you.

Regarding an RSS diagnosis, I know of several families who are in the RSS

Division and their child does not have RSS. That doesn't matter. We all

understand the challenges we face together and that is what truly defines a

" Division " within MAGIC. Welcome RSS or non-RSS.

You might be interested in hearing that Dr. Harbison wanted to know at the

convention where one of these non-RSS families was this year. She missed

seeing their son and hoped he would be back next year. She considers it her

duty to try to accurately diagnose children. That is one of her role as a

physician. Another role she assumes is to watch the families enjoy

networking and meeting one another. This is more of a personal role for her.

Hope this helps put your worries to rest.

Walbridge

[Guest guest]

Thanks, Jodi!!

I had to put off the lactose test a week due to the

new pediatricians wanting to have a lengthy visit with

me and Jake before they will issue the referrals for

that and the upper g.i. x-rays series. Fortunately,

the specialists we use are affiliated with the same

hospital that the pediatricians are. (I partly chose

the new pediatric practice for that reason). The next

step would be an actual upper g.i. (tube thru the

throat). Is that the test that determined that the

food motility was not normal? I will also be

reminding the G.I. that Jake had reflux as a baby

(altho never threw up per se) and took reglan and

maalox for that. I wonder why he hasn't complained

from the time the dr's told us to stop that medication

(age 9 mo's) until about age 5 when the tummy aches

(and now the chest burning sensation) started. I

wonder if (it is) the reflux went away and is now

starting again---is that possible?

Anyway, I will let you know how we make out.

Also, thanks for the explanation of the IEP process.

When Jake was 3 yrs., I had him tested by the Child

Study Team (having just finished Early Intervention

svc's) and he was not deficient in enough of one area

to be eligible for the " handicapped preschool

program " .

So, now as he is about to start Kindergarten in Sept,

I spoke (about a month ago when I registered the kids

in their new school) to the Child Study Team leader to

see if he thought we need to set up a meeting. We

decided to let him start Kindergarten and see if he

rises to the challenge. As far as I can tell, he

needs help with writing - o.t. He has trouble holding

the pencil, crayon, whatever, by himself for the

purpose of writing letters, numbers, etc. Hence, he

cannot write his name very well by himself

(practically not at all by himself, but can with my

helping him to hold the pencil). He can do other

things (fine motor-wise)--one would not suspect a

problem.

Finally, my question: if the teacher suspects a need

for O.T., does that require the entire process of an

evaluation by the child study team? I am, also,

concerned that he " fades " out quickly when I am

working with him on his letters and numbers and

writing his name. He didn't always and does have a

good attention span with lotsa activities. Maybe it's

because it's me and he will work longer with a

teacher or other person. He also isn't interested

when Hannah tries to play school with him-he's a very

unwilling student!

Anyway, thanks for all the info!

Have a great weekend!

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[Guest guest]

Hi, Jodi!!

Thanks, it is the x-rays every 1/2 hr or so after

drinking the stuff thing that I meant. Only after

that and the lactose int. test would they consider

doing the endoscopy (I couldn't think of that name

before, either) if necessary. I don't think it will

come to that, tho. The nurse practitioner didn't

mention a nasal tube, however. I have to call anyway

tomorrow to see if it's going to be next Monday.

Thanks, again.

Debbi, Jake's mom, 5 yrs., 5 mos., 27 1/2 " and 29 lbs.

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