Pre-diagnosis toddler symptoms

[kate]

My daughter is 19 months old and we have started to realize that the common thread in her food reactions is fructose.

She screamed fairly constantly from the day she was born and was diagnosed with cows milk protein allergy at 9 weeks old following 3 hospital admissions. Her grumpiness and inability to sleep slowly improved (to an extent) after I'd been on a dairy-free diet for around 4-6 weeks (I was breastfeeding). Weaning didn't go well. She developed a face rash and bad (ie bleeding) bottom with the simplest of foods - pear, apple, sweet potato, carrot and became grumpy and slept even less well than before. She has never vomited following eating.

My question is this....what symptoms did you observe in your child when they were young? Are symptoms of HFI severe from the start or do they worsen over time as liver/kidney damage develops? My daughter has always had very little fructose in her diet as we avoid a lot of fruit out of fear of horrific nappy rash and the grumps, she never has anything with sugar in it (mainly due to her milk allergy as biscuits etc all tend to include milk) and she doesn't like honey.

Her symptoms are as follows:

- Around 20 mins after fructose containing food ie raw baby corn, honey-roast ham in sandwich, - often becomes tired, restless, intense, difficult to manage.
- Refuses afternoon nap and struggles to settle at bedtime.
- Frequent stools.
- Burnt painful bottom within around 6 hours, bleeding with pear/apple/grapes
- Grumpy and hard work for around 24 hours.

The dietician says these are signs of DFM and it won't be HFI as the symptoms aren't severe and she's thriving in terms of height and weight, but are symptoms severe from the outset, especially if your child has had a low fructose diet from the start?

Any personal experience would be great as there seems to be so little info available on this condition.

[kate]

I forgot to mention that she is still allergic to dairy and also to all soya. Yes - her diet feels pretty restricted but we're going Japanese (a mainly rice and veg-based diet if you omit the soya) and are learning about all sorts of tasty foods that we can still enjoy as a family (check out www.justbento for ideas).

[Tammy]

Hi Kate
There are so many variations to HFI that there isn't a cut and dried answer to your question. There are several different reactions and reaction times.

Your daughter could very well have HFI - or not. As far as the reasoning being because she isn't severe enough is crap though. Her symptoms are very much like others on here. And it could just be a case of how sensitive she is to fructose.

My daughter is a diagnosed case of HFI. The only symptom she had was an enlarged liver. Now that she is fructose free, she has other signs, but she didn't in the begining.

Your best idea is to go completely fructose free and see how she improves until they find out for sure. It won't hurt her for awhile even if she doesn't have HFI.

If you are trying bits of fruit, etc, how is her liver? That is more likely what the dr will go by. If by 19 months her liver isn't showing any damage and her blood work is fine, then it's more likely DFI, which should still put her on a fructose free diet until she improves.

Just keep your head up. And keep on the doctors. They seem to need pushed to get them in this direction.
Tammy

[charlie]

Hi kate,

yes your daughters symptoms ring alot of bells with us. I used to have to change Megs nappies very quickly after she would do foul smelling runny poos that burnt her skin. She would scream with pain after foods too although the reaction has got less acute as she has got older.

As for the symptoms aren't severe enough - that is rubbish, we had well she would be dead by now if she had it. we aren't confirmed diagnosis yet awaiting gene test results at the moment but she is very reactive to fructose and sugar.
Another thing to think about that has been pointed my way by Lucky is congenital sucrase isomaltase deficiency where a different enzyme is missing and symptoms may show alot faster after food that fructose intolerance. Certainly it rings alot of bells for me, and they nearly looked into it years ago but because her fructose breath test was so positive they never followed it up. On the HFI diet alot of sucrose is eliminated as a result but she is still showing some problems.....
Worth putting on your list to ask......
This is the link to the relevant site:
www.csidinfo.com/



BTW if you are going down the fructose free diet you need to cut out all veg as well as fruit to start with. But as Tammy said, keep fighting, keep asking questions, your daughter obviously has something wrong and needs dealing with.

[dzhura]

Kate,
My daughter is 5, she has confirmed diagnosis HFI through gene tests, but since she is compound heterozygote her symptoms are not as severe as in homozygotes. When she was your daughter's age, I could not give her any fruits or anything sweet - she would spit them up or vomit afterwords. She never ate any fruits, anything sweet and most of the vegetables. Her liver is damaged and her transaminase are 2-3 times higher than normal. Our doctors did not believe she could have HFI as she was developing normally, but I insisted on gene tests. I wanted a confirmation before I could force her eat fruits and vegetables as are healthy for people. We had 2 tests done - one for most common mutations, and the other one a complete screen of ALDOB), and they were both positive, indicating what particular mutations she has.
I've read that most children with HFI don't have a taste for fruits and sweets, they pick up a safe diet from young childhood. It's true with HFI that the longer you eat fructose, the more damage to the liver/kidney it does. If the gene test is not too expensive for you, I'd recommend you to do it, and better full screen of ALDOB, not most common mutations.
And since you notice all those symptoms after your daughter eats fructose, keep fructose-free diet, at least for some time

[ukbill]

Dzhura you are so right about the diet .. however the protective defense your child is trying to learn, to avoid anything sweet, can be broken by feeding a child with artificial sweeteners and Glucose / dextrose type foods which then destroy the child's natural protective aversion to sweet tasting foods.

This is a life long problem thereafter.

Many of the Adult HFI'ers on the site who eat Glucose etc. seem to be reporting a far lower level of health than those of us who avoid all sweet tasting foods.

I understand that parents feel that they HAVE to feed their children sweets and candy so they will "fit in" and be "normal".. this is a common misconception.. an HFI child is DIFFERENT and will never be "normal" in their eating so do not destroy the one defense a child has to stay well and healthy by feeding them so called "safe" sweets.

There is nothing "safe" about sweet tasting foods for an HFI child.

[kate]

Thanks for all your posts. We saw the paediatric allergy consultant yesterday who has referred us to paediatric gastro for fructose tolerance testing "and to rule out more serious congenital metabolic conditions" by which I'm assuming he means HFI. I have been very impressed by the attitudes and approach of both the dietician and consultant.

I'm thinking it is more likely to be simple dietary fructose malabsorption as my daughter can tolerate more veg than many of you report on this site. She had a small amount of red pepper yesterday with no reaction, other than a possible increase in the rash on her face which appears on its own with moderate fructose such as wheat and berries, plus in conjunction with other symptoms with high fructose foods. Do any of you/your children get rashes from fructose containing foods? It seems to be a very odd reaction?

ANOTHER QUESTION: My daughter has become a lot more content and happy since cutting out high fructose foods. She's like a different child! Even other mums are commenting on it. The dietician has told me to keep moderate fructose foods which just cause a facial rash in her diet. What do people think of this? I would tend to agree. I'm very reluctant to remove all fructose as she seems to tolerate some fine and I would be worried that her intolerance would get worse if I removed it all. She recently had no fruit at all for about 10 days and then had a banana on the weekend (which she is usually fine with) although this time it caused a bleeding bottom within 6 hours. Was this because I had not given her any for a short while and would this happen with other foods if I cut them out and then tried to reintroduce them at a later date? I would hate to make her food problems worse.

[kate]

Also, my daughter enjoys sweet stuff such as fruit. She LOVES savory stuff like meat and green veg, but she'd gobble down fruit if she was hungry. That suggests its not HFI too, right?

[charlie]

Hi Kate, I would wait to see what results the doctors come up with before deciding absolutely which one she has.

However, if she is showing clear signs of reacting to fructose in some way you are better to completely remove all fructose as much is possible for at least a few weeks, if not months then very slowly and carefully add things in over a period of time charting any signs of a reaction, otherwise you may never build up a clear pattern of what is causing what, especially as sometimes it takes a few days to kick in.

Also if it may be FM rather than HFI, and bananas are apparently ok for that then you also need to clear her system first to then build up a clear pattern of tolerance. if you havent already have a look on www.fructosemalabsorb.proboards.com that I started when they started Meg on the FM diet.

In answer to your last question, although they mainly have a natural aversion it isn't as cut and dried as all that so no, don't use that as an indicator.

[ukbill]

Kate children will try and eat anything particularly if they are hungry..

IT is a problem to stop babies putting things like garden worms in their mouths.. soil grass sand everything gets in there! even when they are not hungry!

However a straight answer to your question is yes if we are hungry enough we will eat sweet foods. we may vomit scream and things like that after but if hungry enough it will go down, at least for a short time.

You do not mention your daughter going weak and floppy (childhood signs of Hypoglycaemia) after eating Fructose containing food.. so I would not expect her to be HFI but anything is possible..

As others have said keep pushing the doctors and turn over every stone.. you are already doing this by finding this forum well done!

Keep smiling

Reegards

Bill A.

[kate]

Thanks for all your posts. I've headed over to the FM proboard as I'm assuming that's what it is until proven otherwise!