Liver failing?

[danielle]

Hi marleen,

Great to meet somebody who knows this subject from Holland!
Yes I would really appreciate the name of your doctor. I don't seem to get anywhere with mine.

Dies DNA results came back negative for HFI. My doctor said they don,t do the Fructose breath test anymore at this hospital and it sounded like this was all she could do.

In the meantime things have gone bad again with my little one. Because we had flue and lactose introduction going on we were not sure wat was causing him to have reflux problems, throwing up and bad nights agian. I now, 2 weeks later suspect it was actually the transfer from Neocate to Neocate Active for 1+. My dietician assured me that there was no sugar in it. But I googled and found the ingredients (that were not on the box) and it has polisacharides in it. I am not an expert but google tells me that these can also include fructose molecules, for instance inulin. Does anyone know more about this?
The dietician was not aware and the doctor is not available.....
I stopped 5 days a go after which he got diarrea....is this his body getting rid of the sugars? He calmed down over the past few days and last night finally slept well again.

Thanks for all your comments
Danielle

[charlie]

Yippeeee, new computer so can at last post again without the computer crashing half way through. But don't worry folks, doesn't mean I will bore you with longer posts.

Danielle, as you will find not all DNA tests do come back positive as there seem to be variants.

Have they checked for bacterial infection in the bowel at all, Meg had this when she was two, she had helicobacter pylori diagnosed after she used to get the screaming pains at night and projectile vomiting. She had 2 weeks of antibiotics and some other stuff which was horrid but solved that problem, unfortunately they stopped looking into fructose as they thought that was the answer so took several more years to get them to listen.

I assume you are using the unflavoured neocate. The problem with anything manufactured is what may have slipped into the recipe un noticed, then several years down the line it suddenly appears on the ingredients list. Does your child have solids now too, if so and you get a good balanced diet going then you may not need the neocate at all. Meg stopped formula at 12 months as none suited her.

Type us a list of what you feed over several days and we can all scrutinise it for you and see what may be slipping through. Also he may not have HFI but fructose malabsorbtion which causes bowel irritation and pain so the fructose free diet is still essential at this stage if it is that. Yes they diagnose it by breath test but at his age it is very hard to do accurately as they have to blow really hard for it to be accurate so better to do it with an elimination diet.

[charlie]

Inulins are polymers composed mainly of fructose units, and typically have a terminal glucose. The fructose units in inulins are joined by a ƒÀ(2¨1) glycosidic bond. In general, plant inulins contain between 20 and several thousand fructose units. Smaller compounds are called fructooligosaccharides, the simplest being 1-kestose, which has 2 fructose units and 1 glucose unit.

This was off the wikipedia page, which sort of answers your question that maybe that is the problem especially if he has fructose malabsorbtion as they have a problem with the oligofructose poly wotnots. The bowel can apparently absorb simple fructose molecules if it has equal glucose ratio as the glucose pulls the fructose through the bowel wall, but the polysaccarhides are a problem. There is a diet now called FODMAP if you google that it tells you all about it, a dietitian Sue Shepherd in australia has done lot s of research and now it has come over to the UK. I have started Meg on it very cautiously and I am not sure yet, she seems to be having more tantrums especially half an hour after having something with sugar in it but the foul diarrhea hasn't started so maybe it will work. Fructose malabsorbtion has always been put as a less severe condition but I think they are now finding more and more if it starts in infancy it can have a big health affect and the only way to improve it is to stop all irritants for several years and allow the bowel to settle.

The trouble with these kids is they may have several things going on, for years everything was put down to her fructose problem, now they think she has ADD so it may be the episodes I was putting down to fructose where ADD, trouble is sugar can set that off so either way she may have to stay off it!!!!


Anyway, if you need to go more down this route then PM me so we don't block this board with the wrong condition. If you have Yahoo there is a fructose malabsorbtion group, based in australia so some foods are wrong but it is quite helpful. Much harder format to read than this board though!!!