Wednesday, November 24, 2010

Hope. What a wonderful word.

Just a note to say Cooper is seeing another specialist on Monday and will be tested to see what he can tolerate now that he is 4. I HOPE that he can be more informative and helpful and at least give us some direction to move forward with all this. We've waited since May. Will post results when we know more.

We went out to dinner last night and we took some risks this week with Coopers food. So we paid the price for that and we were up for hours last night with me cuddling him, rubbing his back and him working through his stomach cramping. With him starting school late next year experimentation will have to be put on hold until school holiday time. He is such a brave little boy. I told him last night how much I loved him over and over again. I told him about the doctor and he just looked at me with a blank stare and didn't say a word. He was probably very tired.


5 comments:

macocha said...

good luck at your appt!

Kathryn said...

I have just stumbled across your blog, and must say I am horrified at how little information you seem to have on FM, and the result this is having on your son. I don't want to come across all preachy, but surely you should have been given better information by now. My son also has FM and is now 3, diagnoased finally a year and a half ago. He is highly sensitive to fructose and can't tolerate any fructose in any form. Your son sounds equally sensitive.
You need to be much stricter in his diet or he simply won't get better. Simple really.
The long term problems of not excluding fructose are serious, with anaemia, failure to grow, tryptophan, folic acid, and zinc deficiencies all leading to other problems. The tryptophan deficiency will lead to sleep problems and mental health imbalances.
My son's current diet excludes ALL fruit, ALL vegetables except spinach and chard, ALL sucrose (commenly called sugar), wheat, spelt, brown rice, honey, vinegar.
As a good sugar alternative dextrose/glucose powder is good for baking, and you can use rice syrup as a honey substitute. Rye flour and all traditionally glutenfree flours are fine. I find the glutenfree section of the supermarket useful, although not everything is fructose free, so double check everything.
I make cakes, biscuits and bread from scratch, my son loves them, and it is possible to make them tasty, as my sons chocolate birthday cake went down a treat at his party. nothing will ever be as sweet as regular baking, but at least you can boast that your son has no cavities ;)
eating out is the biggest problem, and we don't go out much. japanese food is actually the best bet, if you can ensure the sushi rice does not have fructose added, but does have the more tradtional rice equivalents (rice syrup and rice vinegar)
I have to admit that catering for someone with FM is very hard. I had never baked before, I LOVE my veg, and alot of things I had as a child are out of the question but i make a meal for us both everyday, and am always on the look out for recipes I can adapt for him. I may even write a cook book.
If you need any advice, please email me
kitgray@talk21.com

Liz and Cooper said...

Sorry Kathryn, but I disagree with your comment. We have seen many doctors, specialists, natropaths, dieticians etc and they too have little information and basically at the end of the day it's been up to us trial things. Cooper has MULTIPLE intolerances but it has taken a lot of trial and error to diagnose these over the years. He doesn't just have Fructose Malabsorption. IF HE ONLY HAD FRUCTOSE MALABSORPTION IT WOULD BE A WHOLE LOT EASIER TO MANAGE. Even the specialists have said to me Cooper's intolerances are complex. Meaning there isn't much more they can do. Believe me I have worked hard at ensuring he has the best diet one which is low sugar and low fructose void of dairy and void of soy and egg free. I know you probably mean well but I would never harm my son I am his advocate and only ever want what is best for his health and happiness.
Reading labels and making his food from scratch has become part of our everyday life. Maybe I have painted the wrong picture for you.

Rachel said...

I keep checking to see if you have had any answers from your appointment. I hope that it was helpful for you and not just another frustration, which is what I feel most of our dr. appts. are, but you at least have testing and doctors who know about fructose malabsorption. I sometimes wonder if my kids aren't also food chemical intolerant also, have you looked into that? Salicylates and amines? This is such a hard thing to figure out. I feel such a bond with you and Cooper when I read again about the nighttimes we share. I have almost given up that we will ever get to the point where she has no stomach aches. But at least she is healthy and happy for the most part. There are many things to be thankful for. I just feel the need to constantly apologize for my sleep deprived state of functioning. Thanks for listening to my rantings. I hope all is well.

Liz and Cooper said...

Hi Rachel,

so sorry I didn't respond sooner to your comment or even do a post. With a new baby, xmas, work etc life is so busy.
I'm sorry to hear your little one is having tummy aches. What do you think is causing it? How old is she?

I can assure you things will get better. Look after yourself you are your babies strongest advocate. She is lucky to have such a great mum.
I think kids with fructose malabsorption are sent to us because we have the patience and strength to deal with it.