Hypoglycemic episodes

[charlie]

Hi all,
does anyone know the mechanisms behind the low blood sugar problem. Is it due to the reduction in energy foods in the diet or does the body have a problem producing energy? My daughter Megan is having more and more blood sugar lows which seem to send her into a screaming rage which only subsides after having a drink of milk or a sandwich. I'm not sure if they are becoming more frequent because since being diagnosed and on a more or less complete exclusion of fructose she has more energy and therefore is alot more active or am I just getting better at spotting them.
her teacher says she is in the bottom group and thinks last year she was completely zoned out alot of the time, now there are times when she doesn't even try to get through to her and other times when she is really alert.
We are in process of challenging with glucose as I wasn't sure if she was reacting to glucose last year and was violently sick for 24 hours after eating a cake i made for her birthday with glucose syrup.
The other main thing she gets is restless legs at night, she comes through and wakes me up at about 2 to 3 every night and says her legs ache, she then sleeps but kicks me all night.
Any ideas would be gratefully received.

[meaniejean]

Charlie,
From what I have read, the hypoglycemia is a result of the body not being able to access its glycogen reserves in the liver in reaction to the inability to properly break down fructose. If you can't access your glycogen, then you need to eat foods containing glucose in order to raise your blood sugar. My son gets ketonuria as a result of this process because his body starts going for his body fat (of which he is already in short supply). I may have this wrong, but this was my understanding of the hypo. I think it may only happen with fructose ingestion - which could be even very small amounts for some people. I think I have also heard that some on this board are just prone to hypoglycemia in general, so perhaps it also something that often coincides with HFI.

I have suffered from restless legs my whole life, which in recent years has also turned into excruciating leg pain to the point I am sometimes unable to stand for more than a couple of minutes. I was in the process of finally being evaluated for this when we came upon the HFI info. My restless legs and leg pain only manifest now when I have had even small amounts of fructose. I don't know if this is related to the possible HFI (I am not diagnosed - waiting for insurance to say they will cover the testing) or if it is something else entirely. Perhaps Megan is still getting some small amounts that for her are sufficient to be causing symptoms?

I am glad you posted - I have been wondering how you guys were getting along.

[charlie]

Ouch Fred,
have I caught you on a bad day?
We are still SLOWLY turning on the NHS wheel here in rural britain so it takes a long time to get answers here. Yes at first they though she had DFI but after an off the scale breath test and a negative EEG for petit mal and going through her symptoms again they have decided it is more likely HFI and we are awaiting blood test results on liver function etc and utrasound scan findings. Her symptoms became clearer after putting her on the Boston diet and she seems to react to even the tinsiest bit of fructose and over a few days.

Yes one big thing I have learnt is not too worry about what she is missing out on as I would much rather have a healthy happy child on a plain diet - the birthday cake fiasco was a year ago just after we had decided she was having a problem again with fructose and some bright spark suggested glucose.
I have been very frustrated with the diagnostic procedure here. Her GP suggested HFI when she was 18 months old and the pediatricians dismissed it as she was thriving, just throwing up alot and getting bug after bug and tummy pains. To be fair to them it was difficult to know what was going on until she could vocalise more. It wasn;t until she was due to start school and was still incontinent alot of the time that we went down the fructose path. It took the hospital 7 months to refer us as they kept losing us in their system!!!
it seems very little is known about HFI or DFI in this area so now suddenly they are getting very excited about her and we are finally in the albeit slow system. We are due to see the pediatrician again on Thurs so we will follow up the hypoglycemia then. It may well be I haven't spotted something or maybe need to add something to her diet.
I must say our dietician is proving very helpful and hasn't taken the route of everyone else that don't be silly vegetables don't have enough fructose in them to worry about. And her diet chart i had to fill in sent me cross eyed.
we are getting there but it is a very slow process and I am hugely grateful to this board for the advise I have found on it. Not having symtoms myself it is very difficult to know what she is feeling

[meaniejean]

Charlie,
This is certainly a stressful process - no diagnosis, reactions to tiny amounts of fructose and a child in pain. I am taking Colormist's advice given in the "Undiagnosed" thread - stick to meat, dairy and grains. We have tried some veggies and some lemon juice with reactions to all, so we are sticking to the basics and I will worry about "proper" nutrition later. Please feel free to message me any time as it seems we are going through exactly the same situation.
Best wishes,
Sandra

[colormist]

Fred can get feisty, but he doesn't mean any harm. He's just really passionate about the whole ordeal. He also went through a lot to get his diagnosis and has the most experience with HFI, so what he says is true.

I've been wondering what the medical system is like in Britain. I just watched Michael Moore's Docudrama, Sicko, and he gave a brief overview of the health care process in Britain and France. It seemed too good to be true, but then there are issues with any doctors. I guess it just depends on how persistent the parents are and how stubborn the doctors get. I was all prepared for a full-out fisticuffs battle when I was seeking my diagnosis, but everyone seemed to listen to me (or at least played along to amuse me).

[charlie]

Umm, yes the system is interesting a variable here. yes it is free but as a result it can be slow. it varies alot on your area and who you see. When we lived in a different part of sussex originally when it was first suspected we were under a different hospital and pediatric team, this time round I asked to see a different pediatrician and got taken alot more seriously but it did take alot of persistence to get there. if a test is not positive they don't seem to want to look outside the box if they don't exactly fit into the clinical picture. However I am not moaning cos we got there in the end. The system is you see your GP, probably a number of times with repeat symtoms, they then refer you to your local hospital General Pediatrician, this takes about a month unless of course life threatening when you go to A & E. They then refer you on to the relevant pediatric department which takes at least a further month or more if a long wait list. Unfortunately ours took 7 months and alot of phone calls as we got lost several times in the system. Then of course it takes several more weeks to book in the relevant tests then another month to get your next appointment to be told the results.
I'm a veterinary Osteopath and that is all private, well I tell you what the animals get diagnosed a hell of a lot faster and alot more thoroughly as i have told my doctor a few times - his answer was "well go and see a bloody vet then!!" Luckily we do get on well.
I have noticed a difference in the interest this time round on HFI, i think they are starting to learn more about it but they all say they have either never dealt with it or only seen 2 cases in their career.

Don't worry, didn't take offence at Fred, my comment was tongue in cheek. Without people like him and you and other longterm stalwarts of this board we would still be stuck at first base.

[mazian]

Dear charlie,
Have you got the HFI DNA testing done yet? We also have the leg cramping problem. Someone has told me that it is because of lactic acid buildup which happens with fructose in HFI patients. Has anyone else had this happen? My doctors are treating her as HFI until it is proven differently with a IV Fructose load test. We are having trouble sourcing the IV Fructose, but hopefully we will know in the next few months. This site is new to me and I have read so much of your boards. It is sooooooo goooooooood that I finally found some people going through the same thing. I am so surprised how similar the symptoms are to Sarisa, as some of the symptoms have been dismissed by our doctors until recently. Hopefully you are more on the road of diagnosis.

[meaniejean]

Mazian-
Welcome to the board! This place has been a lifesaver for us!

We also get the cramping. It seems to mostly involve our abdomen - kind of like the kind of cramp you get in your side from exercising - and our legs - for me these cramps feel like I ran a marathon - which I've done before so I know I'm not exaggerating on that one!

With a very fructose restricted diet I do not experience any of the cramping!!! Yippee! For a long time I would have days when I could barely stand or walk without a lot of pain. I also have trouble staightening my torso and standing upright (like I lose my muscle strength in my stomach, hips and back) when I have fructose.

My 4-year-old had the DNA test done and it came back negative. His docs don't believe he could have HFI or that he could be as sensitive as he is to fructose. We haven't had the IV fructose test. The gastroenterologist did a hydrogen breath test with an oral fructose load - but she never had them check his blood sugar or anything else. He was sick for months after the test. I still get mad when I think about what they put him through. From what I have read, the IV test is much safer because it doesn't tear up your intestines, it is a smaller amount of fructose and they can carefully monitor the situation. Good luck with the testing and congratulations on finding a way to bring health to our little one!

Best wishes,
Sandra

[charlie]

They haven't offered the gene test here. She obviously has some sort of problem with fructose and the treatment is no different to what we are doing so I haven't pushed for it. By eliminating fructose it has cleared up some but not all of the problems so she is fed up enough with all the tests to find out what else is going on so we will just stick with that for now.

[mazian]

Sandra, I am glad to hear that fructose has cleared up the leg cramps. We were starting to believe that all her symptoms were not related. I think that after reading this site, she is very similar to others.
Charlie, I understand completely. We kept having to go down the testing route for years and we would get a little better each time or a little worse and go back down the road again. Our turning point was when all her 6 pedi specialists got into a room and talked it out. We did a chart with all her symptoms and test results and important issues with diet etc. I will send you ours to show you what it looked like. I did it because my husband couldn't understand what was going on. This tool is used when we diagnose complex computer system problems. IT worked really well for the doctors to focus on the problems and not dismiss symptoms for what ever reason. We would have one doctor dismiss the leg cramp and another say that that was important, or the diareah etc. It was a nightmare. my e-mail is [e-mail] if you want to e-mail me.

[elilly]

The hypoglycemia coupled with fructose intolerance could be a glycogen storage disease. Just a thought.

[Janice]

Hi,
I have a daughter that we suspect has HFI. Which of the Glycogen Storage Diseases would involve fructose and hypoglycemia?

[meaniejean]

Amanda,

When we started the fructose restriction I had no idea that so many of our medical issues would disappear! It was an extremely pleasant surprise to say the least. My leg cramping, dizzy spells and heart palpitations had been getting worse and worse, but I never thought they were related to my GI troubles. My littlest guy was losing weight, vomiting and his kidney function was abnormal because they had us giving him juice for constipation and an antibiotic with sorbitol in it to try to speed up his GI motility. He is now a huge chunky monkey with restriction and is sensitive to the taste of "sugar" in food. He calls it "apple sugar" now because he got a sip of his cousins apple juice a month ago and got sick. So now when he gets sick he says he had "apple sugar."

It sounds like it has been a long journey for you. I am so glad you have found this site and that your little on is on the road to recovery.

Sandra

[meaniejean]

Janice,

I'm not sure about other types, but Glycogen Storage Disease Type 1a and 1b are characterized by fasting hypoglycemia and treatment includes restriction of fructose.

Also, GSD Type 0 can involve fasting hypoglycemia and then post-meal HYPERglycemia with lactic acid build-up in the blood. I have read that large doses of fructose such as in an oral fructose tolerance test can cause lactic acidosis which can provoke symptoms similar to those seen in HFI - abdominal pain, vomiting, etc. With this disorder people can be sensitive to monosaccharides in general - glucose, galactose and fructose. The hypoglycemia in this condition is not usually as bad as it is in other GSDs.

Hope that helps! Check out emedicine for a more complete description. I'm certainly not an expert on these - just stuff that I came across when I was looking for some answers.

Sandra

[mazian]

Dear Charlie, check with your doctors as my daughter was tested for these conditions there are quite a few actually, and fortunately (or unfortunately) she was not positive for any of these. I think that you guys have had as many tests as we have and it is very frustrating. My daughter can't have any dextrose or any form of sugar at the moment, she is just eating basmati rice, meat (only fresh), and egg white. We can't really get much less and they are having trouble with vitamins, since she is on such a restricted diet. However, she is much better on this diet, she just wants to eat other food. Oh well, hopefully they will work out what is wrong with Meg and you can sleep a little better at night. Keep us posted. I will do the same. Just went to the hospital this week again.

[charlie]

I will do, thanks, you have to do it very politely here in England, suggestions aren't always taken the right way!! Going to start chasing results on Monday. We are back to very basic foods again, we went on holiday last week and had planned camping but our horsebox broke down so we ended up in B & B and no cooking facilities so ended up having to risk a few meals out, megs lived on fish in batter and chips which I suspect had some sugar somewhere, we are back to no energy at all and screaming and shouting at each other, a sure sign she is reacting. I try not to get frustrated with it and react but I am only human!!

She does sleep better on no dextrose, glucose and very restricted fructose but she still has no energy and that is what I'm still trying to address. We are going to try the seravit incase the vitamin, mineral boost helps.

[mazian]

Sandra,
The restriction of fructose has truly changed our lives. Unfortunately, we are trying to find some antibiotics and anti-histamines which are safe for her. What do you guys do when you need these types of medication?
Amanda

[meaniejean]

Amanda,

Calvin recently had an ear infection and needed antibiotics. He had to use the regular antibiotic capsules as that was the only thing that would not have sorbitol or glycerin. If your little one is not sensitive to glycerin, then the pharmacist can probably make a solution using the antibiotic powder and glycerin. Calvin just turned four, but he manages to swallow pills quite well. I would suggest that route if possible. If Sawyer gets an infection, I don't know what we will do because he can't swallow the pills yet.

The antihistamine we use is Benadryl quick dissolve tablets for children. They contain sucralose so we only use them for big allergic reactions.

Best to you! If you find out about other meds, please let me know.

Sincerely,
Sandra

[billiejh]

Amanda, how old is your child? Our 4 year old swallows half of a 10mg tablet of reactine, 5mg is the amount for her age and weight. We have had to teach her for the last year and half, but now she does it easily. She has immune deficiencies and is allergic to much, so when she was smaller we would give her benadryl liquid that was sugar free and dye free, but she seemed to be having some sort of reaction to it, then we realized it had sorbitol in it. That's when we had to switch to reactine. But as Sandra mentioned, if the reaction is big, sometimes you need to get it into them regardless.

[mazian]

Dear Sandra,
My daughter can take tablets really easy, however we are finding that even a small amount of sorbital, surcrose or lactose in these tablets are making a difference with her.
I got the listing for each of the antihistamines. Some have maize starch which I am trying to find out if that has any fructanes or fructose in it. If not, then she might be able to tolerate telfast as it uses sodium saccharin instead of the other nasties.

Billiejh, my daughter is 8 years old, but cannot take any liquids. Last time we gave her demazin she had another "turn blue and stop breathing" episode, so we now stay really clear of all liquids.

The antibiotic we are using is rulide D which is a general new antibiotic which has natural strawberry and licorice flavours. There is no other sugar except the saccharin and glycerin.

Unfortunately, she is reacting and making life difficult, however, what options are there? She needs the antibiotics.

Good luck.