Thanks for replying, I really didnt think there would be anyone out there so I wasnt even going to post. My DD 16.5mths old hasnt been diagnosed as yet but we suspect she has this so I have reduced the amount of fructose in her diet and we have seen a huge difference. I was wondering if you could share your experience with me, in particular how did Ashton come to be diagnosed with it, how did they test for it, what food does he eat (I realise this can vary from person to person) and anything else you can help me with.
I have a paed appointment this week and I am going to ask them about it. Hopefully we can find out for sure if this is what she has, she is also anemic which I have heard can be a symptom of FM.
Ashton got really sick in April last year, with vomiting and diarrhoea. I had him to 2 GP's by the time my son's 5th birthday party had started one Sunday. One just said it was Gastro but I knew deep down it was more than Gastro.
I had a feeling something wasn't right from the moment he switched to cow's milk at 12mths old. He had maybe only once in his life done a solid poo. He would vomit after eating yoghurt. I said to my GP quite a few times that I had a feeling he was lactose intolerant, but I kept getting fobbed off. I even switched milks myself for a while to prove my own point. It didn't work cause he would still get sick on stuff, that didn't have Lactose in it.
Anyway in April I demanded further testing. Stool samples showed us he had salmonella poisoning. Which was still in his samples 4 weeks later. I demanded a lactose test. We got referred to the Womens & Childrens Hospital for Breath Tests. We had to go every day for 3 days as they did 3 different tests. One test per day. Each test lasted 2 hours. Ashton had to have a sugary drink and then breathe into a test tube every 30mins. With babies they stuck a little tube near their nose and drawed in their breath. Was quite amazing really. After day 2 we got told by the lady we didn't have to go back as they had discovered something.
Went went to the GP for results and I was expecting Lactose Intolerance. We were floored when we got told he had Lactose Intolerance and Fructose Malabsorption. We got referred to our local hospital to see a dietican. But were basically told to change all our milk, butter, etc etc and to not give him apples, bananas, oranges, watermelon or any fruit juices. Everything our kid loved. I got into the car and burst into tears thinking he never be able to eat tasty food again.
We had the dietician appointment not long after who gave us a list of stuff to stay clear from. At the start we basically stayed cleared from everything on the list because we wanted to get his system back on track. We were basically told the only fruit he could eat was berried fruits, strawberries, blackberries etc.
Apples, Banana, Custard Apples, Grapes, Pears and Pomegranates were very high in the fructose range. We also had to get into the habit of reading labels. We had to avoid anything containing fructose, sucrose (sugar, beet sugar, cane sugar), honey, maple syrup, fruit syrup, HFCS (High fructose corn syrup) and invert sugar. We also had to avoid inulin, Erythritol, Sorbitol, Isomalt, Lactitol, Maltitol, mannitol, and xylitol. Also had to avoid fruit juice and anything containing fruit juice like the natural confectionery lollies
It also ruled out a lot of stuff that was artificially sweetened including over the counter medications. So no only did we have to avoid that we also were avoiding all Lactose stuff as well. Milk Fats, Milk Solids etc etc. His diet became very bland and boring.
As the year has progressed we are slowly introducing little bits, and we know if he has had to much stuff during a week as he will get sick. We have found out that Allen's brand snakes he can have. We have also found a Mud Cake in the health aisle of the supermarket he can have. So birthday parties are getting a tad bit easier. He is also now tolerating cordial again providing it isn't to strong.
I have since gone on to buy a book which you can get online. It is called the Low FodMap Diet and it is buy Dr Sue Shepherd who is a dietician in Victoria. It lists supermarket items that they can eat. So I hope that helps you somewhat. That has been our experience so far. We're not sure if he will ever grow out of it, but we're hoping like hell he does LOL.
Last edited by Astrolady; May 25th, 2010 at 02:44 PM.
Astrolady I just wish I could give you a hug you have had such a tough time, thank you so much for that huge and informative reply I really do appreciate it. There is not a huge amount of information out there about it.
We have our paed appointment tomorrow so I am hoping to organise some further tests, I will come back and chat to you more when I know more. I have ordered the sue shepherd book, I didnt really want to do it until I knew for sure that she had FM but seeing how much she improves when we avoid high fructose foods is amazing.
There is a support group on Facebook and also on yahoo if you dont already know about them. If you dont and you are interested let me know and I will point you in the right direction.
Sal xoxox
Goodluck for today Sal. I think I did see the Facebook FM group when he was first diagnosed. You are right there isn't much information out there, and what information there is often conflicts against each other as well.
The fodmap book is good, it does fructose but also has little letters next to each thing so you know if there is lactose (l) or gluten (g) or onion (o) etc.
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Anyone have a child with Fructose Malabsorption??
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