What sould we try next?

[kate]

I'm looking for suggestions on what to try next with my daughter who is now 13 months and seems very sensitive to fructose, even more so than her big sister.

Her diet currently consists of:

White rice in various forms
Chicken, beef, pork
White fish, tuna
All spice for flavour
Soy protein formula

We have tried and failed with:

Dairy (seperate issue)
Spinach
Broccoli
Cauliflower
Potatoes
Wheat
Banana
Apple
Grapes
Apricots
Root veg
Cinnamon
Calpol (contains maltitol).

I was planning on trying potatoes again, only prepared differently, but am now wondering if there is actually something safer to try as potatoes have a small amount of fructose when you look them up on the database.

Thanks.

[colormist]

Maybe pancakes (if she does okay with eggs)? Do you use bleached-white flour? I use Jiffy Mix for my pancakes/waffles.

You could also try cream of rice or cream of wheat. Might be gross without milk, though.

I think Fred just wrote in another thread about soy. It's really not safe for people with HFI. I had a violent reaction to soy-creamer and soy coffee (this was before I knew what my condition was), but I do okay with soy sauce. I wonder if the soy protein formula might be aggravating her condition (given the large amount of fructose in soy) and making her much more sensitive than she should be.

I've seen rice milk in the beverage aisle, though I haven't tried it myself, it might be an alternative to milk/dairy. Definitely check the ingredients.

[charlie]

Have you tried using rice flour or the doves farm gluten free flour blends.

Another idea is oats? If she ok with them then make a porridge using just water, if you make a nice thick one there are no rules saying it can't be fed with meat....... Just unusual but she isn't to know......

[kate]

Thanks guys. Colormist, she can't do wheat (not sure why that is) and I'm nervous about trying eggs as she had a true allergic reaction to dairy products and eggs are highly allergenic. The rice milk is a good idea though. I know you can't use it as a main drink for under 5's as it contains high level of naturally occuring arsenic, but if we get as far as baking then I could use it in that.

The soy formula isn't causing problems at all. Her reactions are very specific and objective (horrible rash and foul diarrhea and unsettled) and her skin and poo and temperment are perfect on the 40oz of formula she is currently having in a day. Your comment has prompted me to email sma though to ask whether wysoy contains any fructose in any form. I'm assuming that either soy protein isolate is a pure protein isolate and therefore contains no fructose or else fructose isn't the issue, although it is the only common thread I can find at the moment.

Charlie, I'll try oats tomorrow. That's a good idea. No fructose but obviously lots of starch so that could clear up the CSID query too. I've looked up white rice flour on amazon but I can't find any recipes which wouldn't include eggs so may hold off until we've tried egg first.

Thanks so much for you suggestions. Working all this out is really hard work but would be nigh on impossible without you all.

[colormist]

Have you tried corn meal? You might be able to make corn fritters or corn muffins (I'm not sure of the ingredients needed for those recipes). There is also a corn pasta which is pretty yummy. My husband went gluten-free for about a year and I had to get really creative doing fructose- and wheat-free recipes.

[charlie]

Hi kate, have had a busy day experimenting with food ideas for Megs and come up with a few you may want to try.
One question - can you use the formula milk to cook with, if you can then that will open up all sorts of ideas with white sauce which makes any HFI, FM dish more tasty. Megs used to live on white sauces when she was younger.

I can get potato flour from Holland & Barrett, and sometimes in Waitrose, or Tesco. Or try cornflour. For the amount she would need you are looking at relatively low starch if that turns out to be an issue. Just mix it in a little cold water then add to heated formula and simmer until it thickens. You can then add some glucose powder to make a custard for a pudding idea. I use it on meats, fish, pasta, rice etc etc etc.

Noodles, I have found some nice easy rice vermicelli noodles, they are instant so just add boiling water for 3 minutes and serve, reminds me of my "Pot Noodle" experiments way back for Laura, these would be perfect to take on a picnic with a flask of boiled water for an instant hot dish for her. They have rice and tapioca starch in them, I can't remember but I think they were a Holland &Barrett find, must remember to write these things down..... Or maybe Waitrose. Anyway they are made by www.mama-ricenoodles.com. If you are worried about starch then just add a spoonful to her meat and see her tolerance, then gradually increase the amount over a few days.

Flatbread is the other one, there is a recipe I posted on here, will paste link to it. Well I tried it with gluten free flour and it worked really well so will post that one on the FM board as not so relevant here, I used this mornings fried bacon fat to cook them in for some extra flavour and they were extremely tasty if I may say so myself. You can use them as finger food, the extra grease from the bacon fat will be good for her to add some fat to her diet.

hfiinfo.proboards.com/thread/1464/flatbread
So give them a go and let me know what you think.

[kate]

Fantastic ideas Charlie. The white sauce is a great idea, and I was planning on trying her with cornflour next week so that would be a good way to introduce it. We thought she was sensitive to corn when I ate it before she was fully weaned though so I'll go slow with it initially.

Also, HOORAY FOR OATS!!!!!!! Emma had a taste on Tuesday, 2 tablespoons Wednesday and 4 Tablespoons this morning and has been fine!!! I could leap with excitement, which my local friends don't really understand but I'm sure you and others on this forum will appreciate! I found a recipe for porridge pancakes which you make in the microwave - 2T rolled oats and 2T milk (I used formula) mixed in a small bottomed bowl. Heat at 800W for 2 mins and leave to cool. It comes out like a scotch pancake. I added allspice to them and she really enjoyed them. I've also found a recipe for oatcakes which use just rolled oats, oil and water which I'm yet to try.

Is tapioca completely fructose free? If so I'll try the noodles. Emma definately reacts to potatoes so may steer clear of the potato flour. But didn't Med used to react to potatoes too? The Dove Farm gluten free flour has quite a few different flours in it so I think I should probably work my way through them one at a time before using it. I'm not sure about the potato or buckwheat flours in it.

I emailed sma and they have confirmed that wysoy is completely fructose free. I'm sure I read somewhere that there are now regulations which state that formula isn't allowed to contain fructose which is one of the reasons why HFI is less less acutely dangerous in infancy. Many formulas in the UK used to have fructose as the main energy source and now there's none. I think in other countries, such as in Eastern Europe (I think) some formulas still do.

Thanks again for the wonderful ideas and for the oats suggestion. I'll let you know how we get on.

[charlie]

That's great Kate,

Yes we all know about the jumping for joy when you find the tiniest thing they can eat and enjoy.........like you say others look at you like you come off a different planet.......

Yes I am sure Meg reacted to potato which is what set me thinking about the starch being a problem but never sure with the flour as you only need a little bit but maybe start with rice flour, I think I got a big bag from tesco in their aisle that does like Asian food, will look on their website. The trouble is it tends to be made from brown flour so will be higher in fructose possibly.
I think Bill has said he is ok with tapioca, I think it is low fructose but it is higher starch so again like me you will be left thinking which is it.......
Keep experimenting but very slowly, don't try too much at once or you just end up confused as you have to take in the accumulated effect........

[nicoleh]

I'm a little confused about the CSID thing here. Rice is really high in starch - so wouldn't the fact that someone tolerates rice be a key indicator that they couldn't have CSID? or is there something weird about rice that makes it tolerable for CSID patients?
TIA

Oh and to answer your original question kate - I would be trying eggs if it was me. There's no suggestion of cross-reactivity between eggs and dairy, and she already tolerates some 'allergenic foods' like soy protein and fish, so I would see egg as no increased risk and it would really add nutrition and flexibility to what you cook. I would recommend you get eggs from someone's backyard chooks if possible, or organic, or free range at least though. I know a number of people who have serious reactions to eggs that are regular cage or barn eggs, but do fine on organic or free range. weird, but true. If you're worried about a reaction, try a very small quantity of yolk only, and do it on a day when there are doctors on duty nearby and at a low-traffic time of day, just in case you have to dash. (but very unlikely)

[charlie]

Nicole, to answer your starch query, no not necessarily, All csid cases seem to have different tolerance levels of starch, some have absolutely no tolerance others are ok on it. There are 4 different mutations. See www.csidinfo.com. Also it may vary on variety of rice and how you cook it, if you rinse it you can decrease the starch level slightly.

Kate, if you try eggs, maybe just try the white or the yolk separately. I think the general consensus on here is that any fructose is likely to be in the yolk.... Can someone who was in on those conversations correct me if I am wrong here, and we are talking low fructose too.

[kate]

We're seeing the allergy team tomorrow so I'll ask about eggs then. I know with my eldest that they told me to wait with eggs until she was 2 because of other allergies. I didn't realise they had any fructose in them. If somewhere could confirm where it is then that would be great.

Nicoleh - yes, the rice thing is a confusion for me when it comes to csid. Some databases place it as having much less starch than other things though. The csidinfo database for example. But I know that my eldest reacts to potato starch and my youngest reacts to potatoes which seems unusual for fructose related problems. So it makes me cautious with other starch related foods.

I'm hoping that the medical team tomorrow can shed some light on the situation so that we can move forward with a bit of direction. This weekend my youngest reacted to black pepper which my mum used to season her chicken with. I've learnt from the csid people that black pepper is half sucrose so that's a quater fructose. Whether it's the sucrose or the fructose it still seems ridiculously sensitive. There's definitely something very not right, I just wish I knew what it was. So frustrating.....

[charlie]

Good luck tomorrow Kate, let's hope you get some answers.....

The trouble is with the little ones, they are soooooo sensitive you can go cross eyed looking at things. Was it the pepper, or just gut irritation, or was it a budget chicken. I stopped using them when Meg seemed to be reacting to more things when I saw a tv report that they inject sugar water into cheap chicken to increase the bulk........ I only used to get meat from a trusted butcher for a long time, but now Meg is bigger her system can cope with more things.