Endoscopies

[Steph]

I think most of you have gone through the endoscopy procedure with
your kids. I have gone through it with James but that was for
different reasons so I'm not really sure what they can all test for.

I was wondering, do they test for fructose, sucrose, glucose
intolerance when they do this, or is this only gaged thru the breath
hydrogen tests. I know they can test for bacterias and celiac and
allergies, but what is your experience on what they test for or what
you want them to test for. Of course I'd love for them to test for
everything, but I know that unless a specific test is order you may
not come across what you are looking for. So I just wonder what are
all the wise things to request them to look at.

Neither of my children at this point are going for endsocopies, but we
are reaching the point where we wonder if this is necessary to get a
better indication. I don't know your system works, but even if I
requested one and convinced them to do one I'm looking at months
before it would get done. It's about a three month wait once you
request it to be booked ... and I first have to get to the GI Doc to
even request it. With Matthew we already are under GI and I have been
communicating with the DIetician and they woudl like to see him again,
so we can discuss this our next visit ...which may be in a couple
weeks, otherwise not until the middle of January. With Rebecca we
have finally given up settling this without GI and asked for a referal
to a GI Doctor, so that will probably take 2-3 months just to get our
first initial consultation.

We're trying the soy formula with Matthew right now ... it's not going
so well. I'm still giving it to him with the hope his system will
settle out ... but I'm getting less hopeful and more discouraged. His
diapers have turned to diarrhea or close to diarrhea with complete
food pieces going through his system. His bum is now red and sore.
Needless to say I am rather discouraged.

So anyways got sidetracked there. If you would be able to give me
lists/ideas of what your children have been tested for so that I can
try my best to discuss all these things if we ever get appointments
and make sure that we cover as much ground as possible.

Thanks
Steph

[sarahlou]

Dear Steph

Henry and Lucy haven't had endoscopys they have had coeliac tests and
other bloods and we have had thoughts about more invasive tests also.
Here is a link to the Yorktest - something else we have thought about
often that may be worth a look.

http://www.yorktest.com/

You do the first step test (£10) that says yes or no to intolerances
(I have had this kit at home for ages but haven't yet managed to do
the finger prick test on Henry!! Tried it in his sleep but this didn't
work!) then if a yes you can pay for the foodscan (I think around
£250).

On one of the other links i posted a really good table of yes foods,
foods to try and foods to avoid - i can repost if you haven't seen.

I know what you are going through - i have good days and bad in terms
of their diet and trying new things and getting despondent when things
don't work - it must be very difficult for you - you are doing really
well ...keep going.

Louise x

[Jo-Anne]

Hi Steph I tried to reply to your message on Friday only to have my
son delete all of it uhh!

It took us 1 month after getting a referal to see the GI doctor and
then it would take 2 weeks to have an endoscopy in the afternoon in a
private hospital or 6 weeks to have it done in the morning in the
Public Women's & Children's hospital as a private patient. We choose
to have it done at the Womens & Childrens Hospital due to fasting
requirements and smaller equipment available.

The endoscopy can see if there is any scaring caused by reflux,
allergys, and other complications. The biopsys can confirm any
microscopic damage or confirm diagnosis of things picked up by the
scope itself. Samples can be taken to measure enzymes like lactose,
sucrose, and starch enzymes but not fructose. The problem with the
enzyme sample is that the sample is the size of a rice grain in a
tennis court. Ethan's lactose came back negative in the endoscopy but
positive in the breath test. He gets a stomach ache just eating a
little cheese (without any outside factors of fructose).

They found out that he had an inlet patch (stomach lining in the
esophagus) which turned out to be nothing but could have been a big
issue if there was more than one finding of inlet patches.

He had candidis of the esophagus which had to be treated (very
expensive treatment) which is normally found in people who have had
their immune system completely crushed.

Hope this helps.

I'm looking at having it done for myself due to fructose and lactose
malaborpsion.

It is hard to see your kid go through anasetic but there is no lasting
damage - a sore throat for a few hours. Ethan quite happily talks
about the needle spot on his hand (that's all he remembers from the
procedure).

Jo-Anne

[Liz Clifford]

Jo-Anne and I share the same Peadatric Gastroenterologist. I have tried to
get a straight explanation of what type of tests they conduct with the
specimen of the small bowel. Let me just say this, he isn't the most
forthcoming doctor. Getting informtion from him is like extracting teeth.
Anyway, he said they test for enzyme levels, Jo-Anne has already written
about this. He also told me they will test for Celiac Sprue, Small Bowel
Overgrowth, Parasites.

With our doctor we had to insist on it and then he finally suggested that we
do the biopsy the last visit purely because of the sucrose positive result
during the breath test.

It has taken probably about 2.5 months and we are also in the private
system. Which is a very long wait when your child is constantly ill with
stomach pain.

I found this link which might be vaguely more informative then he was.

Malabsorption Syndromes (has a list of things that might be tested for).
Some of these things I have never seen before.

http://www.merck.com/mmpe/sec02/ch017/ch017a.html

With this one you can click on the tiny cross hairs to reveal more
navigation.


http://www.merck.com/mmpe/sec02.html

Sorry to hear the soy formula is not going well for Matthew.

[Steph]

We got Rebecca's GI appointment ... June 8th, 2009 ... how does that
sound?????????/
Pathetic I know!!!!!!!!!!!!
I know her condition is not life threatening and is on the bottom of
priority and I know how hard it is to get in when you have a child
with a serious case, but that is just downright ridiculous.
I talked to our pediatrician last week about the date and she was
going to look into having it bumped up and also having her switched to
the same doctor as Matthew ... which to me would have just been common
sense, but I guess they don't think that way when they book.
So anyways ... we won't be getting anywhere with GI for some time ...
but we are looking at other avenues and maybe they will bring results
before we even get to GI.
Steph

[Steph]

I have heard of something similiar here in Canada as well ... can't
recall the name, would have to look it up again. We have also
considered doing this. Considering my husband is a full-time student
and I'm a stay-at-home mom there is the expense aspect to consider
but... sometimes money becomes unimportant when you're dealing with
health issues.

Thanks for the link, I see it says they operate in Canada so I will do
some more reading and compare to the one I have heard of (if I can
find it back) and keep this in mind.

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[jadey]

Great news!!! I have seen Richard Cooper and he is FANTASTIC!!!!!!!!
He spent at least an hour with me(YES! one hour and didn't try and
rush me out) He made me start at the beginning and he listened to
everything and straight away said that she needs further examination
to see what is going on and is sending her to have an endoscopy and
biopsy. I won't get in until Feb but I don't care I found someone that
listens to me. He is going to check all the dissacharides(hope that is
how u spell it - sugars) I think he may suspect CSID but he wouldn't
say. He is going to check her bowels and also see if the reflux has
done any damage. He has put Jaimee back on wheat(this was my
suggestion) to test for celiacs(My husband has just been tested and he
was neg but he is a carrier in his genes for celiacs) He is also
biopsying something else but 'm not quite sure. How sad is this that I
am so excited but I just hope it gives me more answers but then I know
you all have been through it all and still left with no answers so in
saying that I am prepared. I asked him about the hereditary fructose
issue and he seemed to think that if she did have that then at her
breath test she would have been really ill and would have had had to
stay in hospital.

Holiday was fantastic and got home and the mother board on my computer
went so sorry I have not emailed sooner. Hope all the kiddies are
doing well and hope you all have a fantastic xmas xxxxxxxxx

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[Jo-Anne]

Congrats on Jaimee's endoscopy appointment, it will be great to have
matters finally cleared up :), the procedure is pretty painless (a
sore throat) but ask me again in January (I might feel differently
after having it done to myself).

I hope she will be able to enjoy wheat (I remember last time she had a
reaction to it), it will expand her diet a lot (think of all the yummy
food she can try).

I'm glad Dr Cooper is great it is so much better when you see a
proactive doctor :) I noticed the difference a lot between Dr Hammond
(ethan's gastro dr) and Dr Craig (my gastro dr).

It great to hear that your holiday went well. Hubby's home in an hour
so it will be nice to have the family together again (he's been away
on business for a week).

Merry Christmas to all :)