Just when you think.....

[charlie]

Just when you think you've cracked it you get a set back. As I think I have posted before we still have a question mark over glucose with Megs. As she has been going so well I thought I would try a glucose challenge incase her fructose reactions were altering her glucose metabolism. For a week I thought, yippee she is OK with it, I had bought a different brand and introduced it little by little with absolutely no fructose hiccups and apart from her concentration went more and she had a few more 'blank' moments I thought we were Ok. That is until last night, bad night, restless and tummy ache, felt sick all day and horrible poo accident this pm. Oh well, back to square one.
I was hoping she would be ok with glucose to add more variety and maybe venture into the sweet world occaionally. Also how do I give her energy boosts when she needs it if she can't have glucose, we were doing well with milk as an energy boost but she seems to be going off that. I think maybe the school have ovedone the milk thing as everytime she starts blanking or playing up they post her off to drink some milk so maybe she sees it as a punishment. We will have to rethink strategy somehow I think.
Any ideas for energy boosters gratefully recieved.

[mazian]

I find with Sarisa that she also has these blank periods. It has been really disconcerting. Fortunately we had an IQ test when she was 5 and she was classed as gifted. She was in the 99th percentile. When she was tested at 7 she had dropped to 60th percentile. This meant that the doctors believed me when I was saying that she was having trouble. This is very important. Sometimes I think that they think I am an over protective or over cautious mum, however I have had to revive Sarisa 11 times before the age of 4, so I am cautious of foods, and medicines, she is not anaphalactic. We have worked out that it was always when she was given medicine and had an infection. We believe that the build up of fructose caused the heart failure and build up of lactic acid, it was kind of like a shock. Have you had anything like this happen to you? She has been so much better since we took her off fructose and we have stabalised her IQ. It is not dropping as much anymore. However, we still are not at the bottom of the situation. These kids sound really similar. I am interest to hear if anyone else is having these issues.

[meaniejean]

Mazian,

My 4 year old was developmentally delayed until he stopped eating fructose. He did not talk until he was three, though he had initially started to talk around 9-10 months (momma, daddy, kitty, etc.). Then, nothing - he lost words, would only make "sounds" for words ("grrrr" for skeleton, for example) and used a ton of sign language. When he gets fructose now he grunts and points and won't talk.

His GI doc actually asked us at one point if we had had him evaluated for an autism spectrum disorder - a few months later at a follow up appointment after fructose restriction she couldn't believe the change!

My two boys and I also have the blank periods when we get fructose. It really used to freak me out because sometimes it would happen while I was driving or making dinner - don't really want to crash or burn down the house!

Apparently Megan and Calvin have another "twin" in Australia!!!

Best to you and your little one!
Sandra

[charlie]

Megs certainly hasn't had anything as drastic as that, poor you what a thing to have to deal with. What made them or you think fructose intolerance in the first place.

[meaniejean]

It is so awful that all of the medicines are full of sorbitol and these poor kids get these huge fructose doses at a time when they are most susceptible - when they are already sick from an infection.

I don't know how you have maintained your sanity with having to revive your little one so many times.

Like Charlie, I was also wondering how the fructose connection was made.

Charlie, how did you guys come to test for fructose?

[mazian]

Hi guys,

It is nice that people understand.

Here is some of my story.

They worked out the fructose intolerance which they presumed was the fructose malabsorption after lots of testing for allergies. She was vomiting blood at an early age (4 mths) and the testing went on from there as she also was getting lots of bronchitis and lung infections as well as having bouts of heart failure. They tested for everything including all the things I have read on this site as well as some others. After coming up with nothing and no improvement but a flat line graph for her growth and no weight gain at 18mths the allergist, bless his heart, said that he wanted to dot all the i's and cross all the t's and to have a breath hydrogen test for lactose, surcrose and fructose. He assured me that they would be negative. She had the lactose test which was positive and then they suggested the fructose. Which we had trouble getting her to dring. After 5 trys they decided that she had got enough solution for the test. She was violently ill pretty much within the first 30 minutes and they had never seen such a large graph for the positive result. Thankfully they decided to forgoe the sucrose test.
She was then classed as ultra sensitive and I excluded almost all fructose from her diet. But I was advised that she could still have the low fructose fruit and veg. Now knowing I was hurting her by giving her these foods. If I had only known then what I know now.

She became so much better but was still having some problems. THe allergist continued to work with us and things started getting worse again. They assured me that she didn't have HFI becuase she would be dead if she did (really assuring). So we continued to add food to her diet with no luck. Finally the allergist said enough was enough as he couldnt explain the reactions she was getting. He thought that it was metabolic and the endochronologist said that there was something else as well as she wasn't really growing to well. So the metabolic people did more tests and they couldn't come up with anything. At this point I was sure that it was HFI and I suggested it to the 6 pedis which were looking at her case. We had got to the point where she was unable to attend school as she was so sick all the time, even on a low fructose restricted diet, she was in a pram (lucky she was small or I would have been house bound) most of the time and couldn't even remember how to spell her name (which she had been doing since she was 3).
At this point I was very upset and the pedi decided to do the IQ test. When this came back, everyone was shocked at the decline in her performance and was even more determined to find out what was happening and they started believing me again. I was classed as a responsible mother again by the medical staff and since then they have diagnosed her with HFI and treating it such until we have result from the IV fructose (which they believe will be positive). They think that she is one of the 25% who are not diagnosed by DNA testing.

Now I am trying to find out even more about HFI and found this web site in the last week. It has been so wonderful to hear other peoples stories and that there are other kids who are having these dificulties as well and it is part of the condition and not just what I am giving her to eat.

Thankyou all for your contribution to this site, it has helped me soooooo much.
Amanda (Mazian)

[charlie]

They assured me that she didn't have HFI becuase she would be dead if she did (really assuring

[charlie]

oops sorry, pressed the wrong button. Oh that sentence, it seems to be the general opinion the world over, we had more or less the same words said to us when she was two and five!!! Yes, she may well be if we hadn't trusted our instincts and known there was something wrong. Hopefully with things like this proboard and finding more sufferers out there more medics may get to know more about this disorder. The problem is it is so rare few people have heard about it.

I was lucky in a way that our GP had heard of it when she was a toddler and seeded it in my head as a possibility otherwise I may well have a much sicker child.
Megs was a perfect baby although she had had to be rescusitated when born as there had been complications at the last minute. I breast fed until 4 months and things seemed fine, it was only when we started weaning the fun and games started. She was very resistant to alot of things and took days to get onto formula which I had to start as I was back to work and was drying up. It took 2 weeks at least to get her to have baby rice and fruit cubes which are the first things they tell you to try. She started projectile vomiting even during a meal, poos were vile, not sleeping, screaming at night in pain, bloating and her height centile dropped but not her weight.
They started on the dairy first so changed to soya which of course made things worse. Then she was off dairy and wheat and still things carried on. she had flu after cold after stomach bug and dropped from the 92nd height centile when she was born to the 25th. Eventually the gp said it may be a sugar problem, the symptoms fitted sucrose or fructose but it was very rare and they rarely thrive!! But maybe worth looking into. I naturally don't have a sweet diet anyway so maybe I wasn't loading her as much as some may have done.
Anyway we decided to do an elimination diet to detox and test her at the same time so we put her on chicken and rice for 4 days, she rice for breakfast, and chicken and rice for the other 2 meals. Amazingly she was quite happy and by day 4 looked better in her skin. Then we gradually every other day added in different things starting with proteins and I logged any changes. I seem to remember we did milk early on and that was OK. Anyway things went fine until I did carrot as the first vegetable and she started runny poos almost immediately and tummy ache, so I stopped those and did 4 days safe things again then tried another veg and the same thing happened. Repeated safe then tried a fruit and hey presto again reacted. Then tried sugar and oh boy the regret!!
At that stage the gp referred her and they still insisted on testing her for celiac which was negative then decided it was a gastritis because of the screaming night pains so treated her for helicobacter pylori which cleared that but not the rest. The paed at that point was still adamant it wasnt HFI because "They assured me that she didn't have HFI becuase she would be dead if she did "........
I kept her off fructose but not veg at that point and symptoms improved but didn't stop. Of course at that stage I didn't realise how much fructose is in some veg as they kept saying that to me. At one stage she went back onto normal diet and all the symptoms started up again with terrible incontinence so I off my own back stopped all fructose but gave her some veg and things improved. At that point I started to jump up and down more and here we are now. I must say things only dramatically improved when I removed all veg as well.
Thats when they did the breath test and oh oops it was very high.
Sorry to bore those that have already had all this info but hopeully it helps new people to realise that you do have to keep pressing for answers but you'll get there in the end.

[mazian]

Thanks for the insight. Sounds so familar.