My little girl....

[kate]

I am joining this forum as the common thread in my 20 month old daughter's reactions seems to be fructose. She has been referred for testing and in the meantime we are working with a very supportive dietician.

She also has cow's milk protein allergy and soya allergy so her diet is frustratingly restricted. That said, finding that fructose is the issue makes life easier as there are less exclamations of "she's reacted to carrots, really, CARROTS (or insert any other number of seemingly innocuous foods which I now know contain fructose)".

Our daughter screamed from the day we brought her home which was due to the cow's milk protein allergy. We didn't realize this until after 3 hospital admissions by the time she was 9 weeks old with 'inconsolable crying' as the medics put it. Weaning was a nightmare with the grumps, poor sleep, a bleeding bottom and rashes with the simplest of foods - pear, apple, carrot, sweet potato, wheat, etc, etc, etc. Baby rice and meat seemed to be the only safe foods.

She is a wonderful little girl and is eager to please and not naughty by nature but she has always had a demanding intensity to her, like a child who is overtired or coming down with a bug. Since removing high fructose foods from her diet she has become happy and content and the intensity is gone. I feel like I am getting to know a completely different child who is a pleasure to be with rather than a challenge. And we've also had no bleeding bottoms and 3 hour naps every day!

[Charlie Arnold]

Hi Kate, welcome to the forum, it sounds like you are well on the way to a clear answer. I'm glad you have a supportive dietitian as that is so important that they can understand what is going on. Ours doesn't have a clue about this diet so can only make general observations so we have had to do all our research by trial and error almost.

This fructose does seem to absolutely wipe the poor kids out and you end up having to handle everything carefully at home, but hopefully between us all we can come up with a safe and suitable but fun diet solution to help them all.

Alot of the recipes we post have milk in them so you may have to adjust some to your safe alternative which makes it even more restrictive and some of the products may be safe in one country but not in another.

Where in the world are you? perhaps you can fill in the location box in your profile then people will be able to tell.

Meanwhile keep up the good work, it sounds like you are doing a good job

Charlie

[kate]

We are halfway through a lactose-free dairy challenge and so far its going well. I'm so excited about potentially having a child with a lactose intolerance rather than a cows milk protein allergy! Cheese, yogurt, milk........wonderful!

[Charlie Arnold]

Hi Kate, good news things are improving.

what are you giving her, I've had Megs on lactaid milk, cheese and cheese spread and I do think she seems to be better on them then regular stuff.

But I have also gone back onto full HFI diet and hardly any potato so not absolutely sure which is working.

[kate]

Hi Charlie,

I bought some "Lactofree" made by Arla in the fresh section of Tesco. Its normal milk with half the sugars removed and then the remaining lactose broken down (into what I'm not sure actually). Is lactaid the same thing? Where do you buy it as I went back to Tesco last night to buy lactose free yogurt or cheese for the next stage of the challenge and they don't stock any.

I'm sorry to hear from your other thread that the hospital lost Megan's blood sample for the gene testing. How frustrating.

[Charlie Arnold]

Yes, we use Arla, she seems to like it. We must be very lucky as our Tesco (large one not express) stocks everything in their range. But on the Sainsbury online site they have everything so you may have more luck there.

Go on their website or arla one: www.arlafoods.co.uk/products/cheese/lactofree/lactofree-hard-cheese/ and you can see where your local stockist may be.

I haven't found any plain yoghurt yet only fruit ones so far. But the cream is great and the cheese, its very mild but Meg prefers it that way.

[kate]

Moved onto Stage 3 of the dairy challenge today = lactose-free cheese (I found some in Asda Charlie). Didn't go well....sigh. Back to the oatmilk for another 3 months.......at least we got a stage further than last time.

[kate]

My daughter's gastro appointment has come through for the end of this month which is much sooner than I was anticipating. Hopefully they will have some experience dealing with fructose issues and will be of help.

We continue to trial foods every few weeks and have made it to the lofty heights of a few blueberries!!! My daughter now tolerates spinach, celery, mushrooms, cauliflower, broccolli, half a banana, half a satsuma, a few blueberries and we're currently trialing peas. A single strawberry was a step too far, but given that blueberries have 90mg/100g of free fructose and strawberries have 450mg/100g that's probably not surprising!

[kate]

We've seen the gastro doc who says that it definately isn't FM as she doesn't get loose stools and one of her main symptoms is a facial rash which would be caused post-absorption and FM is due to a lack of absorption.

Left the appointment feeling like a neurotic mother and tested her with 2 raspberries with breakfast the next morning. The result.....facial rash, burnt sore bottom and no afternoon nap.

I have one question for people - the burnt bottom my daughter gets looks like its more from the urine than the poo. I know HFI causes elevated uric acid. Would this cause this type of nappy rash, have any of you seen this reaction in your children pre-toilet training and should I be mentioning it to the doctors or am I just being neurotic?

[Charlie Arnold]

This is the problem with diagnosis, unless it fits exactly in the box they think it isn't a fructose problem. BUT, everyone seems to have different reactions and levels of tolerance and yes, the classic symptom is loose stools but not always.

Meg gets a facial rash mainly above her top lip but also odd rashes on the body.

As for the burning, it may be urine or poo, or both causing it, I suspect as a result of metabolic acidosis caused by an inbalance of hydrogen ions from too much fructose in the small intestines. There are various online articles about it and most are highly technical but there is one that lists this quite clearly as a problem with fructose intolerance. I need to do a bit more research to be able to explain quite easily the process but I do wonder if by giving them bicarbonate that this may be neutralised. I may try it next time Meg starts burning....

But yes, list everything, no matter how minute, to the doctors, if necessary take a picture or video of things when at its worse as you can guarantee by the time you get to see them it will have cleared up. I show them a photo of Megs at her worst before I took her off fructose when she was a toddler as they only see the present picture.

And no, never think you are being neurotic, unfortunately you have to be to get the full answers. Sadly, that is a feeling we all get left with after appointments but stick with it and you will get there.

Hugs from all
Charlie

[kate]

Thanks for your reply Charlie. Your knowledge is so helpful as is your reassurance, especially at the moment as I don't have time to research things myself hence my recent absence from this forum - we're due another baby in 5 weeks and its been a long, hard pregnancy and my husband lost his job in June. Thankfully he's now back in employment but this baby couldn't come soon enough.....

[Charlie Arnold]

You are welcome Kate, wow, what a worrying but exciting time for you. Our thoughts are with you. Maybe watch the olympics, the excitement might pop the baby out early!!!!!!!!!!!

[kate]

Well, the baby arrived - Emma Joy. She's 6 weeks now, very lovely, and is unfortunately cows milk protein and soya intolerant like her big sister so no dairy/soya for me for a while.... Hopefully fructose won't be an issue when we come to weaning.

We're waiting on liver function and genetic testing results to rule out HFI in Jyoti. It's unlikely she has it but it will be helpful to know for sure. She hasn't made any progress with her fructose intake and last week was interesting as she ended up on antibiotics for an ear infection which contained sorbitol. I didn't finish the course as none of us could cope with the side effects. What do other people do re antibiotics?

[Charlie Arnold]

Congratulations kate and family. At least you know early what to avoid with her so you can tread carefully from the beginning. I suppose the best thing to do will to be to delay introducing fructose till as late as possible to avoid all the awful reactions just in case.

Good luck with the tests on Jyoti too, lets hope you get some answers. Keep us posted there.

As for antibiotics, we haven't used any yet, they nearly put Meg on some once when we thought she had an infection I think she had a really bad earache then but they held off as we just couldn't find any without sugar or sweeteners. It did clear up on its own. Strangely enough when Meg has a reaction one of the first signs is earache and if she is having a bad reaction her temperature rockets. Normally I give her paracetamol and ride out the symptoms for a few days as it progresses into what seems like a really heavy cold and sores on her upper lip. Eventually I realised it wasn't flu or a cold but a reaction as it always coincided with her cheating on something so this last week she had a bad reaction after I gave her the wrong hot chocolate and I gave her sugar free piriton (chlorphenamine) when her temperature had shot up and she didn't develop the heavy cold etc and her earache went away.
It might be worth trying that if your daughter keeps getting earache, it may be a food reaction. I have posted about earache before and temperature on several board but no one else seems to get it. However that brings us back to CSID as they are prone to upper respiritory infections.

[kate]

Jyoti's liver function and HFI genetic tests came back normal. Thank goodness. My knee jerk reaction was to tell myself that as it wasn't HFI I could surely relax about her diet and should try reintroducing things a bit more proactively. The next day she asked if she could have a grape and I said yes. Here's what happened....

Started pee-ing every 20-30 minutes which continued all afternoon and evening.
Got a burnt bleeding bottom from the pee which was very sore.
Became hyper, hanging off me, throwing herself on the floor, unable to follow simple commands.
Was up for HOURS overnight, crying and unable to settle (not good when you also have a 12 week old baby who feeds every couple hours).

She was back to her normal self by the end of the following day. How and why can a child react like that to one single grape? And why are there no gut symptoms if its FM? If its not HFI or FM then what is it? And how do I fix it? So frustrating....