Dietician Notes and Matthew Update

[Steph]

Thanks for the additional diet info information Liz. Every little bit
helps to try make the puzzle easier. I passed along all the
information I had to our dietician and her reply was:

"After reading though the information you sent me I can see that you
have been thorough and I also can understand your frustration. As far
as different fructose diets you are right that the information is
highly variable. I think that is partly because it is still a
relatively new area of dietary changes."

She would like to meet to go over descrepencies and better discuss
things. Here comments about my current diet:

"I would encourage you to try to be less restrictive where you feel it
is possible. As for the undigested food in his stools, this is not
uncommon in young children and usually is not a cause for concern.
Also this time of year there are lots of reasons not related to diet
that someone may get diarrhea."

If I felt it was possible to be less restrictive don't you think I
would be??? Seems sort of an odd thing to say. The undigested foods
she is talking about is the initial reaction Matthew had when we put
him on soy formula. He got a red rashy bum as well as face, loose
stools and whole pieces of food in his stools (just like with milk
except it didn't come on as quickly, strongly or as bad). I agree
that it's a time of year (winter here) where there's lots going on
but it's time fell right in with the soy introduction so I'm quite
positive they are related. I disagree with this being common in
children. Every parent I've discussed this with who have "normal"
children expressed surprise or concern ... I guess when they get to
be a GI Dietician they get so used to these thing they forget what is
truly normal.

We have continued with the soy since it was not as severe as milk with
the hope his system would be able to adjust and settle out. We
introduced it really slowly and tomorrow he will finally be on full
soy formula. I think his system has adjusted, his stools are good
again, no more whole foods, the rash on his bum is better, it's just
his face that's still flaring up ... but with the setting in of winter
it's hard to know whether this could be further irritating by the
weather. I haven't yet been able to see a flare up right after having
soy. I am so thankful that soy seems to be okay ... I was quite
worried when he started to react.

On a postiive note we are trying to decrease his formula intake from
45-50 oz per day down to about 30oz per day. It is going much better
this time then last time we attempted this and even more encouraging
is the fact that he is actually eating something ... not up to par
with his age, but far more then he has ever eaten before. It is so
exciting to see and I sure hope it will be long term. I will not get
truly excited until this happens regularly. 30z is still a lot for
his age ... but for now we're happy to have him settle there and can
take another downwards step in the future.

I continue to remain concerned about the fact that there is sucrose in
his formula. We have switched him over to Alsoy formula because his
previous formula had sucrose as the second ingredient. My web search
showed sucrose as the 4th ingredient in Alsoy, although not happy with
this I figured it would at least decrease the intake and the #1
ingredient is corn maltodextrin, so at least he's getting plenty of
glucose. I guess the website must be US based or something because
the Alsoy I bought has sucrose as the 3rd ingredient.

I realize that he's still getting more glucose then fructose but I
would really rather have his formula completely fructose free so that
I can work with the fructose in his solid diet. Now I am constant
alert to the fact that he is intaking fructose in his formula and
since he drinks a fair amount I have no idea where this puts him on
his daily limit and so I feel very restricted on what I can feed him.
Given we're trying to get him to eat better it would be nice to feel a
bit less restricted. Unfortunately my conversations with the
dietician so far seem to suggest she does not see this as a
concern ... but at the same time I don't really think they get the
whole fructose thing ... so it's like pulling teeth ... you can talk
till your blue but if they don't agree you really don't get very
far.

What I did do to reduce the fructose load a bit more was purchase
unsweetened soy milk which is fortified with vitamins. I did some
calculation to come up with a equation where I could mix the Alsoy
with the Unsweetented Soy in order to make his calorie, fat, carb and
protein similiar to homo (3%) milk ... which is what they recommend
kids his age be drinking. It worked out that 75% of his bottle is
Also and 25% is unsweetened soy ... every little bit counts.

Am I being overparanoid? I really wish the test would indicate the
severity of the case so I know how caution I need to be.

Steph

[Jo-Anne]

Hi Steph,

Its annoying how people think that we are being overly restrictive in
our diets, there not the ones dealing with the children's tummy pains
etc. I'm glad the soy milk is working a little better. Chloe is
completely on soy milk since 18 months.

I'm sorry that the hydrogen breath test only shows a positive or
negative result. Is he also getting tested for sucrose and lactose
malaborption with the hydrogen breath tests?

I hope things are getting better. Chin up.

Jo-Anne