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Post by charlie on Oct 20, 2008 16:30:53 GMT -5
Hello everyone, have rejoined board after several years absence as having been told my daughter Megan wasn't possibly fructose intolerant 3 years ago has now been positively diagnosed at last. It took alot of persuasion as she was thriving but in the end they referred us to a paediatrician who showed an interest and her breath test went off their graph after one hour. Oops, red faces all round. We are in England and it doesn't seem to be well heard of here. Anyway since this a few months ago i have taken her off all fruit, vegetables and any sugar source and the difference is amazing. I am very interested in any more info on absent episodes etc as she was also being tested for petit mal epilepsy due to blackouts she was having, all of which seemed to have stopped now unless she has any suspect food.
also has anyone found any problems with urinary incontinence in their children as she wets herself alot - she is nearly 6 now - if she has anything suspect.
Great to see this board is still here, reading various postings has given me such a psychological boost, especially about the blackouts, I was getting really worried about it all.
Regard to all
Charlie and Megan
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Post by Guest on Oct 20, 2008 21:05:01 GMT -5
Hi your words:
I am very interested in any more info on absent episodes etc as she was also being tested for petit mal epilepsy due to blackouts she was having, all of which seemed to have stopped now unless she has any suspect food.
also has anyone found any problems with urinary incontinence in their children as she wets herself alot - she is nearly 6 now - if she has anything suspect.
Our child is 51/2 and has been through the hoop aswell.
we were told it wasn't HFI so we allowed a dietry discreation in a sausage Called T.V.P Textured vegeatable protien, thinking it was onion or spice we allowed it. at the end of 16 weeks with vomiting which only happened once or twice a week we realised to look because the vomits is on day four after ingestion then day 5 its wet the pants and day 6-8 is right frontal lobe siezures at night and absence seizure in the day. It took about 4-5 weeks of build up before the vomits started so we missed the trigger and just now have caught up with ourselves.
In this 16 weeks we decided to present to a&e for every vomit and if the seizure appered at the same time call a ambulance to monitor breathing because it knocks the air levels around, they got so sick of us seeing her vomit and the bloods keep showing it was no a childhood infection cold etc. They in the end ran an eeg. We are now waiting in que for a three day eeg and appoinment with the endocrinologist.
T.V.P as it turns out is a tastless soy filler that is used as bulk in a lot of meats and sweets. It has really highlighted just how sensitive our child is to any thing anti to HFI. On the diet we have it is listed as a no.no.
Please tell me where to read about any links to HFI and seizures, any one please?
Thank for the imput
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Post by colormist on Oct 21, 2008 7:49:46 GMT -5
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Post by charlie on Oct 21, 2008 15:38:38 GMT -5
Megan had an EEG which showed as normal so they are linking it to her fructose problem. I have noticed that if she has any slight miniscule bit of fructose for at least 4 days after ingestion she has wee and poo accidents and will wake up between 2.30 and 3.00am and come into my bed, although she goes back to sleep she is very restless which means I get exhausted.
It is such a shame that we have to batter against the medics to get any results, seeing your child ill and knowing something is wrong is so stressful and emotionally draining. Hopefully it is becoming more understood.
The other thing I am finding really hard, having done the exclusion and seen now how poorly she must have been is allowing her to go to friends and eat food i haven't prepared. She went to tea the other day and had a marmite sandwich and I forgot to stress to check the bread and we had 5 days of poor sleep. I don't want to become obsessed, I want her to have a life and be able to socialise but i also want her to stay well. do reactions become less as they get older?
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millan
Junior Member
Posts: 79
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Post by millan on Oct 22, 2008 6:35:32 GMT -5
No, reactions won't lessen with age. It's not always fun to be a child with HFI. I've spent a couple of birthday parties with tasteless crackers instead of a good substitute for cake, and a couple of embarrassing moments (being a shy kid sucks) in school when kids I didn't know wanted to know why I was eating something else than the rest of the school.  But it is important that not only you, but your daughter as well, knows exactly what she can and can't eat. For the rest of her life, you will both need to remind/ask any people that hands her anything to put in her mouth that she can't eat sugar. So, please, be obsessed. At least at first, until it's become a way of life. If she learns this from a young age, it doesn't need to become an hindrance in her social life, just something to mention in a friendly manner now and again to people she hangs out with regularly. And to find short and easy to understand explanations for new friends and situations. It's just as if she'd have a severe allergy, only you need to find words to show people it's not an allergy, but still a very dangerous affliction. You might want to start with compiling a list of those friends and relatives that she will likely eat with in the near future. Either give them a call or if you have a chance at a gathering sit down and explain the situation. Something along the lines of: You now have a diagnosis, it's important that she doesn't eat certain things, but you (or your daughter, depending on her age) will be happy to help whenever there's a question or even bringing something along if it's difficult to find something she could eat (at a party for instance). Over time, her closest friends will probably learn what she can and can't eat almost as well as she, and this will not be much of an issue anymore. Well, apart from any time she meets new people.  |
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Post by colormist on Oct 22, 2008 8:28:07 GMT -5
Heck, even explaining things to relatives isn't enough. They'll check most things, but forget to check others. Chicken broth and bread are one of the biggies that slip by unnoticed. It's easier for you, them, and your daughter if you just make the food yourself or bring/suggest a dish that she can eat without issue (macaroni & cheese, butter noodles, rice).
Nowadays I tell people to not worry about feeding me, that I'll eat beforehand (and I usually munch on olives or celery during parties). Or, if we're going out to eat, I let them know of places that I absolutely cannot eat, and they pick from the remaining restaurants.
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Post by charlie on Oct 23, 2008 16:35:12 GMT -5
Hi all, thanks for your words, I am slowly learning how important the diet is, and have finally been referred to a dietitian who was extremely helpful having dealt with a few cases and at no point implied I was being a silly fussy mother, which is the first time this has been the case.
Do you as HFI sufferers have an inbuilt protective mechanism? I am amazed how grown up Megan has been about it, I've never made fuss to her or implied she is missing out but she has never yet complained or worried that others around her are eating cakes or puddings but always just looks to check with me. At a recent party I did notice she was beginning to get a bit stressed as after the 2nd party game she realised all prizes were sweets but she just said I must have them. I must make sure I supply alternative prizes for the party host to give her so she doesn't feel too left out. I have also stressed to the school and family that she musn't feel she is missing out or isn't it a shame she can't eat puddings, sweets etc, it's just a way of life.
I must admit as it is only the two of us at home it is easier to shop and cook the same for both of us and I have noticed I am feeling fitter and losing a bit of weight so its not doing me any harm either. Luckily I home cook alot.
One thing I have whizzed up off the top of my head is sandwich fillings for school lunches. Just use some cooked chicken, some liver if you like it and cream in a liquidizer. Sets overnight and makes a wonderful filler or dip. I do the same with cooked salmon as well.
I discovered the nutrition data website a few weeks ago and boy, what an eye opener!!!
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Post by billiejh on Oct 23, 2008 18:19:34 GMT -5
HI, Charlie, my daughter is 3 and a half, and she also loses control of her urine and stool if she ingests any sugar. She is completely potty trained, and never has accidents unless she ingests small amount of sugar. We couldn't train her until 3 because the doctors had us giving her small amounts of fructose/sucrose off and on over the last couple years, trying to see if the problems were for some othere reason, as they think HFI is rare, and it couldn't be that. When we stopped trying the last bits of sugar( such a s a couple bites of apple a week, doctors orders) within 2 weeks she was trained and even told me herself that she was ready to wear underwear to bed, 13 hours straight of sleep, and she was right, only 3 accidents in six months - one when she had a couple bites of apple, one when she had 5 mini chocolate chips, and one when we let her eat 2 spears of asparagus. I think there is defenitely a connection with the sugars and accidents, even when just small amounts are ingested.
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Post by colormist on Oct 24, 2008 7:52:25 GMT -5
HFIers have an extreme dislike of sugar. For me, being in a room with cake makes me nauseated--especially if everyone is eating it around me. We've pretty much trained our noses to detect sweet smells, but sometimes things slip through. Peer pressure gets a little rough up--especially in the college years--but aside from that, we're pretty good at not eating things that are bad for us.
The reaction to sugar is built up pretty quick--I'd say within the first few attempts at eating sweets. It's really self-correcting.
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