Hi

[Jo-Anne]

I think the group has slowly come to an end.

If not, would the adelaide girls like to catch up?

Jo-Anne

[jadey]

Hi Jo -Anne,

I feel guilty I have not responded sooner but I seem to just not get
the time anymore. My kids seem to always get gastro that tends to last
a week at a time. I would love to catch up. The only day I am free now
is on a Friday. The offer still stands for you all to come to my house
if not we can meet somewhere in the middle again.

While I am here I can let u know the results for Jaimee. When she
first had the biopsy the Dr noticed she was red raw on the inside and
just to touch would make her bleed which he said was quite common with
food intollerances & allergies the he called me and told me she was
missing the enzyme lactase but her Sucrose was normal. So I guess that
rules out CSID which is good but still leaves me not knowing. I still
wonder whether or not she has HFI ^& I have an appt with Dr Hammond on
1st April to go through the results properly.

I guess I just feel discouraged at the moment.......

Let me know if Friday is o.k for you and if not I can try another day.
Liz I would love to catch up with you again too :)

[Liz Clifford]

Hi Girls,

I am sorry I have not responded. I am still really keen to catch up, in fact
I have been thinking of you all and the kids a lot wondering how you are
doing. I have more free time at night now. Things are getting better here on
the personal side but getting busier for me with work.

Jade take heart...Cooper has had a real turn around in the last 2 weeks. It
has been unbelievable. I am still in shock how well he is doing. Still not
100% but geez at least he is sleeping better and can tolerate a bit more
food. I went to see Dr Couper again in pure desperation, and he really
didn't offer much more than what I already knew. After that appointment I
walked away broken hearted because I just couldn't believe that nobody could
help. I even needed some rest and ended up giving Cooper a sedative for a
couple of nights, just so I could sleep. After a couple of weeks TCooper
just seemed to begin to tolerate a bit more sugar and fruit. He can even eat
a bit of wheat in a Digestive biscuit.

Don't give up love things will turn around.

Let's catch up on a Friday I am free and happy to meet wherever it's easiest
for all.

Jo-Anne I hope things are good I'll catch up on the emails.

Love Liz

[Jo-Anne]

Hi Girls,

I can't meet up on a Friday as I work that day. I have every second
monday & tuesday off. But if we can't all meet up before, Chloe's
birthday is coming up on April 15 (party will probably be on the
18th). So we could meet up then?

Poor Jaimee's esphogas must be killing her but at least you might be
able to pin point the food she is reacting too or if she has HFI (due
to her reaction to table sugar). Is it possible to see Dr H earlier?
- 1 month is a long time - he wanted to see us to see him after 2
weeks when they were finding out about the candidus.

It's good that Cooper can tolerate more, I know how it feels to have
to sedate your child because they are not sleeping at all - we had to
do that with Chloe when we were finding out about her reflux/milk
protein intol.

Ethan still can't tolerate any fruit - we tried 1 strawberry on
Saturday and he is still gassy from it. But his diet is under control
although we are all finding it boring at the moment. Chloe can handle
a banana, I'm not sure about the strawberry she was up that night but
it could have been her reflux etc. I will try her again. I can
tolerate a strawberry but not 1/2 a banana.
I went gluten free for 2 weeks (my diarreah final stopped) and the
kids wheat free for 2 weeks (the kids only pooed every few days). Dr
Munt ordered us back on a wheat diet due to malnutritian risks. But
when we went back on a "normal" diet the diarreah stayed away and the
kids returned to pooing once a day. There were no changes in attitude
for Ethan still as many tantrums etc.

P.S. I spent the night up with Chloe who was vomiting as well as the
fact that the kids and I are getting over a cold/cough. uhh.

Love,

Jo-Anne

[Jo-Anne]

Praps you girls would like to catch up on a Friday, and I'll catch up
with you another day.

[jadey]

Hi Jo-anne,

I would love to catch up with you on the 18th of April. let me know
where & when & I shall be there. Is she turning 2?

[Jo-Anne]

We are looking at having a Hungry Jacks or MacDonalds birthday party
as it is fairly safe for food allergies/intol but I will email you
the
details closer to the date rather than putting it up on the website.

She'll be turning 2

[Liz Clifford]

Hi Girls,

Sorry for the drop in communication. Cooper got bad again...but now I think
I've worked out what it is...rice milk. It's got brown rice in it. Which is
no good for fructose mals. He was drinking it by the bucketful. Now i have
taken him off of it.
He is improving...but now I don't know what else to give him in the way of
milk. Running out of options.

Anyway Jo-Anne if it's still ok we would love to see Chloe on her birthday.

I hope your kids are all fine.

This thing is all about Ups and downs.

Love Liz xx

-----Original Message-----
From: fructose_s...@googlegroups.com
[mailto:fructose_s...@googlegroups.com] On Behalf Of Jo-Anne
Sent: Sunday, 8 March 2009 7:12 PM
To: Children's Fructose, Sucrose or Lactose Malabsorption Group

[Jo-Anne]

Sorry to hear that Cooper is not well again, is he up all night with
tummy pains again or diarreah?

I'm still organising Chloe's birthday and you are still all welcome to
come.

We have seen Dr Tao, he's an allergist, and he has helped us try to
introduce things back into our diet. We tried a tiny bit of cheese (I
mean really tiny) in a form of a 1/4 of toasted cheese sandwich with
Ethan, Chloe and I. Chloe refused to eat it. Ethan had tummy aches
after a few hours, diareah that night, and then pooed 5 times before
lunch, etc. etc. I managed not to have anything drastic happen to
me. Ethan has now been diagnosed with milk protein intol (because of
his reaction).

We have also tried 5mls of pinapple juice with 60 mls of water and
sugar added, Chloe refused, Ethan said he had a tummy ache but nothing
else happened. It might be worthwhile trying that again in a smaller
dose.

Dr Tao is worried about out vitamin c in take that is why we are
trying to make a bit more of an effort trying some introduction of
fruit. The kids take a vitamin supplement. We are all finding it
hard to recover from cold etc (chloe might have asthma). PS Dr Tao
bulk bills.

[Liz Clifford]

Hi Jo-Anne,

Cooper has had tummy pains again. I'm so sick of it happening.

Dr Tao sounds helpful...I might get the details from you and see if we can
get in to see him.

That is terrible about the cheese (dairy) and such a tiny amount. Poor
little Ethan. Did the Doc diagnose Ethan's Milk Protein intolerance? Ethan
can still tolerate soy protein?
Maybe Chole sensed it wasn't going to make her feel good. Good to hear you
didn't suffer from the cheese.

Interesting result with the pineapple juice watered down and added sugar.
Do you know if prune juice is high fructose? As I want to give Cooper a bit
watered down.

Anyway we would love to see you all on Chole's birthday.

I will give you a call next week when you are not at work for a chat.

-----Original Message-----
From: fructose_s...@googlegroups.com
[mailto:fructose_s...@googlegroups.com] On Behalf Of Jo-Anne
Sent: Monday, 23 March 2009 10:30 PM
To: Children's Fructose, Sucrose or Lactose Malabsorption Group
Subject: [ ] Re: Hi

[Jo-Anne]

I know how you feel with the tummy pains, having an upset child who
needs to be carried a lot because of tummy pains is not fun (ethan is
a lot heavier almost 16 kg now).
Hugs.

Give me a call any time.

Prune juice would be higher in fructose but if you try Pulp free or
concentrate it is supposed to be free of sucrose. I wouldn't try
anymore than 5mls though diulted in water.

There is a section on fructose/sorbitol/sucrose ratio of fruit juice
in this link.
http://postharvest.ucdavis.edu/datastorefiles/234-270.pdf

Ethan can eat all the soy he wants. He said it will take a lot longer
to recover from the milk protein intol than the lactose intol. He is
suggesting we try again in 3 months.

As Cooper is milk protein intol but not lactose intol is it worth
while asking a dietician/doctor about A2 milk (praps heating it up
first to breakdown the milk protein a bit more)? There are two types
of milk protein A1 and A2 you can be intolerant to A1 & A2 or just
A1. I would only try a small dose (20ml or less) if they think it is
do able.

Jo-Anne