Hypoglycemia

[ktfrlnd]

My name is Katie and I am a mother to a 3 year old with HFI. He was diagnosed at 9 months of age by Boston Children's Hospital. I recently read some posts regarding children becoming hypoglycemic when they are sleeping. I was looking for someone who could explain what the signs would be if he were to be hypoglycemic when waking up. My husband and I have decided that we will not push food on him and he can eat when he is hungry instead of forcing times. I am concerned because there have been evenings when all he wants is milk and goes to bed with no dinner. Thank you!

[charlie]

Basically they either seem to sweat alot at night or wake up cold and clammy. Meg used to wake up cold, clammy and grey with really bad tummy ache. She would be very lethargic until she had something to eat. When she was younger I used to give her a milk drink at about 3 am which was when she tended to wake up and then first thing in the morning at wake up time. I never used to get away with lie-ins or late breakfast as she would yo-yo all day if I did. The main problem is the limitation of foods that provide glucose in the diet as this is what converts to glycogen in the liver stored as back up energy. Maybe try a good protein / fat meal at about 4 pm then that may stock him up enough with milk to keep him going. little and often food is better for them at this age to keep the blood sugar maintained, if their blood sugar goes too low then they feel sick and don't want to eat either.
I find custard puddings worked well for maintaining blood sugar (although I have to limit them now for the starch problem she has but not for you). Get some cornflour, use 2 tablespoons to 1 pint of milk, 1 tablespoon glucose powder/ dextrose and flavour with either a little lemon juice or a teaspoon of cocoa powder (pure and unsweetened). Heat most of the milk then mix the powder with the rest of the cold milk and stir in once milk is near boiling point until it is thickened. I make a batch at a time then keep it in the fridge for cold chocolate puddings too. The cornflour will help release starch slowly that may help him through the night better.
Try to stick to set meals if you can though as it will be better to keep him balanced. You have to balance what is HFI and what is being a toddler trying to control the house like all other toddlers.......

[fred]

Hi ktfrind

I'd just like to add to what Charlie has told you about hypoglycemia. Sometimes trembling occurs with the cold and clammy. Ingestion of small amounts of sucrose or fructose can cause the hypoglycemia as the fructose, instead of glucose goes directly into the blood causing a low blood sugar level.

I frequently use a spoonfull of lactose (milk sugar) in a small glass of milk to bring my blood sugar up if I get a bit shaky, a cold sweat and usually weakness, also goes along with it.

Fred

[ukbill]

Also confusion loss of motor reflex (clumsy)difficulty in thinking and following a thought to conclusion or a conversation..

I usually try to get some milk or cheese or high starch content food eaten if I get Hypo. If its as a result of LOT of Fructose then no amount of food helps because there is no Phosphate left free in the blood to metabolize glucose. When that occurs its just a waiting game slowly our blood sugar will recover with time.
Medical intervention is usually more harm than good the Glucose usually available is either contaminated with Fructose (in the manufacturing process) or the IV fluids are "buffered" with Sorbitol which in an IV can be fatal to an HFI (Fructosemia) patent.

Lactose as Fred says is safe Glucose is not safe.

If we get a lot of low dose fructose contamination it seems that mental development is held back and we appear slow at school.
This is caused by low blood sugar and also the poisons left over from ingestion of Fructose causing us "brain Fog" which is what a lot of HFI people describe after eating something that contains fructose. this can in extreme cases last for a few days after ingestion of Fructose.

We also tend to go Hypo quickly if we do not have enough energy from digesting food.

I certainly can go Hypo quickly if I am called upon to expend a lot of energy suddenly or have not eaten for some time and need to use a lot of strength or high emotional state.

I found a research paper at the Boston University which shows that conversion of body fat back into blood sugar also releases Fructose as a side product of the metabolism process.

SO its important with a child to keep meals small and frequent particularly if the child is active (and all 3 year olds should be very active)

One extra point to mention "tolerated" foods are not "safe" foods anything that contains any amount of Fructose is not good. Many food lists include a lot of "tolerated" foods that are quite high in sugar. these should only be fed in VERY small amounts if at all.

Finally some proper research is coming out int eh UK (I.E stuff not funded by the sugar producers industry) which shows that fats specifically animal fats are very good for us and the type of fats used in process foods (hydrogenated) are really bad for everyone!

Contrary to common belief fruit and Vegetables have very little in vitamins and food value. The main advantage in a modern diet is the fact they contain so very few calories and so much fiber which slows down the digestion, makes us feel fuller for longer and reduces the blood sugar spike that occurs when we eat food low in Fibre.

For an HFI digestible fiber is BAD! it is digested into sucrose in the intestine. and leads to bloating and IBS type symptoms.

We do need fiber but the only type we can safely have is a none digestible type. www.buywholefoodsonline.co.uk/psyllium-husks/?gclid=CPmZppCIwr0CFQjKtAodV10Aug it is avalable form lots of health food shops, is the stuff I take every day (not the powder! only the whole husks) this stuff has been a revelation to me and changed my life, no joke, after 45 odd years of really bad IBS symptoms I am now feeling stronger and healthier than ever before in my life (I'm 58 now).

One or two people will tell you some sweets (smarties) are safe. no they are not safe.

One little boy recently had a long stay in ICU emergency care because his mother was told this, and unfortunately believed it. Yes the small smarties do not contain enough fructose to cause a reaction (I can explain why if you need) however the lad was suffering liver damage as a direct result of eating them on a regular basis and was behind at school. he went to a relatives to visit and they gave him large smarties. well because he was used to eating smarties and therefore had no dislike for sweet tastes he ate a lot of them.. collapsed and ended up in hospital where they continued to make him worse by stuffing him full of contaminated glucose etc.

Finally his mother contacted me (she has my mbl number) and after I told her to stop them trying to help him and let him recover himself he turned the corner and came back to us.

It was a very close call and totally avoidable had she not given him "sweets"

So please I know its hard particularly if you live in a household where a lot of sweets cakes cookies etc are consumed on a constant basis, but feeding sweet flavoured foods to a child with HFI (Fructosemia) is a really very bad idea!

[Tammy]

I just want to also add here that not all HFIer's suffer from hypoglycemia. My daughter Regina is a confirmed case of HFI and she has never had a problem with it. Everyone on here is different. You will have to weigh all the different opinions on here against what works best for your child. If he doesn't want to eat and doesn't have any problems with not eating, then there is nothing to worry about. Bill and I have an ongoing debate about the use of sweetners. We completely disagree and it is your choice of what works best for your child. Like Charlie pointed out, you'll have to learn what is HFI and what is just being a normal kid. It will always be a question of did he get something to eat or did he catch the flu? But with time you'll find what works best for him and your family. Don't let anyone bully you into doing something that doesn't feel right for your situation.

[ukbill]

Sorry but you are very wrong all HFI get Hypoglycemia if Fructose is consumed in sufficient quantity.

It was the ONLY method of diagnosis until genetic testing came in and still remains the one 100% sure proof of HFI that dose not require a liver biopsy.

Tammy if you had ever had an HFI reaction yourself believe me your opinion regarding feeding sweet foods to an HFI child would be completely different!

I do not try to Bully anyone only try to get parents to do what is sensible and most helpful for their child so he or she may grow up and go through life and live it with as few problems as possible and be able to eat out wherever they like and remain safe.

[Tammy]

Bill, Just what is your problem? What part of being confirmed, diagnosed HFI don't you understand? Through a liver biopsy. And she does NOT get hypoglycemic. Again, confirmed, diagnosed does NOT.

AND NO. My opinion would NOT be different. I am not going to debate this again. I have given my many reasons often enough.

This board is supposed to be an open friendly discussion where all opinions can be shared and intelligent, adult parents can weigh their options and make informed decisions for their kids.

THIS IS NOT THE BILL SHOW.

[ukbill]

Check your facts..

If you do not believe me go check the facts for yourself.. I have.

I thank you for aways attacking every post i make that trys to help people, because you make me go back and recheck the information i have read to make sure i am correct.

I do not mind being critisised if i get something wrong.. but not when I'm right!

Tammy I await your proof that anyone with HFI can eat any amount of fructose and not go Hypoglysemic.

If you can find any i will appogise. However there is non.

Quite the opposite all thr metabolic information and sientific proof is that ALL Hfi people will go Hypoglysemic if the eat too much Fructose.

Sorry if factual truth upsets you.

[lucky]

Katie,

*Children's Hospitals often use picture diagrams like this for young children.

*Just explain the meaning of each picture, and your youngster can point to which pictures (if any) match.

*And if your 3yr old is feeling great, he can just flash you an awesome smile and say so.


My recommendation is to make a few copies.
(using this picture -or- google: hypoglycemia cartoon pictures)

1. Keep one in your purse (or car glovebox)
2. One at your son's daycare / preschool
3. One on your fridge

At home, the fridge copy (at your son's eye level) allows (and later reminds) him to learn / identify potential feelings during the day. As a teaching tool, over time, it helps your little-one develop important self awareness, identification, and proper correction skills.

Pictures make for an easy form of quick communication for a preschooler / child.

So, diagrams like the below give a sense of power to a child...which is necessary and rightfully deserved. And with input like this, it is far easier to track health, modify diet, and frequency of meals / snacks to compensate. This is especially important in cases of longer fasting times between meals (as they age), increased activity, illness, minor fructose exposure etc ...all of which have potential to cause blood sugar fluctuations.

Identification is the first step to prevent potential undiagnosed or unrealized hypo incidences.

But remember, HFI or not, a body's blood sugar level is best stabilized with even eating intervals.



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[ukbill]

Lucky that is spot on!

The main Problem with HFI is not the Hypoglycemia that we get from both eating too much Fructose and exercising without enough food being digested, its the poisoning from the Fructose Phosphate in our blood.

This I believe (not having been poisoned any other way)from what I have read is classic poisoning with all the pain that this entails, added to the Hypoglycemia makes for one very nasty horrible time for any HFI.

Hence all my advice to parents! I would not wish a HFI reaction on (nearly)anyone.

[charlie]

What a great chart Lucky. It took a long time to work out hypoglycemia for Megan and now age 11 she can recognise it herself but to have a chart to point to would certainly have helped identify things earlier.

Bill, yes alot get hypoglycemia with any sugar metabolising problem due to the restricted diet and the chemical reactions that go wrong in the body, but it isn't an absolute. But one must respect other parents observations on their child, the lady asked a question, we do not know if it is hypoglycemia, we have not seen the child so people are only relaying their experiences. As has been said many a time we are not here to diagnose, only to advise from our own experiences. Please don't frighten the poor lady away............

[Tammy]

Great chart Lucky and will be very helpful to parents with small kids. What a great thing to keep on hand.
Bill, I am not going to quote you facts as anyone can find anything they want to "prove" today on the internet. And they all look "professional". The question asked was not about hypoglycemia due to eating fructose, but hypoglycemia due to not eating regular, small meals at set times. This is not mandatory for all HFI people. It is not necessary to force a child to eat if this isn't a problem. My "proof" is my HFI daughter. She does not get hypoglycemic from not eating or from exercise. Some days she may not want to eat all day long. And she is fine until she does want to eat. Same at night. She may or may not want something to eat. And if she doesn't, she wakes up just fine in the morning.

[ukbill]

Tammy I think the information provided by Dr Tollan's and Robert H. Lustig, MD, UCSF Professor of Pediatrics in the Division of Endocrinology, can be trusted!

Thats where the information I am getting is from unless you want to dispute both Specialists data?

A short video on Blood sugar metabolism by Dr Lustig is below.

www.youtube.com/watch?v=dBnniua6-oM

Katie I am sorry if the above spat or disagreements displayed on the site, upsets you, please be aware only some advice can be trusted on this and any other site on the internet.

As with all advice found on the internet it is best to check with your usual medical practitioner before you try anything new.

We (those of us with HFI) do not go dangerously low in Blood sugar unless we have eaten some Fructose even if we have no food to digest.

Low levels of Hypoglycemia happens when we exercise hard with insufficient food being digested to support our blood sugar levels, converting body fat back into blood sugar releases Fructose which also will depress our blood sugar and may make us feel unwell.

This is unlikely to happen while asleep.

This observation is not just from my personal experience but from discussions with many HFI people and all of this can be verified by referring to the documents research results into HFI provided by Dr Tollan and Dr Lustig (possibly the worlds leading expert on sugar metabolism)but as you can see one parent disagrees with all this most likely because its me thats saying it

[ukbill]

ktfrlnd Katie On an aside I have battled with over night low blood sugar with my daughter she was born with an immature liver or at least one part of her liver took some time to kick in so to speak, she is not HFI.

As born she had or showed all the signs of Glycogen storage disease.

In that if she did not have enough to eat before being put down to sleep she would not wake up until her apnea monitor was set off as a result of her slipping into a coma and stopping breathing as a result of her very low blood sugar levels..

We battled with this for 9 to 12 months with me having to get her up and feed her while she was still "asleep" because she had not enough energy to wake up. after she started to digest the milk she would then wake up.

One night I was going up stairs to give her her overnight bottle when I was met by her standing up in her cot waiting for me! This was the first time she had ever woken up in her life as a result of being hungry.

From this time on until she was over 5 years old she would wake up at about midnight and demand her supper and a play!

So I can assure you that HFI Fructosemia is not a known problem by itself for a sleeping child

I have both personal experience of low blood sugar levels and experience from my Daughters problems as a child, as a result of this I have done extensive research and spent very many hours reading complex medical research papers on the subject. I do not just take anything found on the internet as fact.. far from it, and nor should you. There will be no apologies coming from my unless I make a mistake, why should I apologize if I'm right?

As you can see I get a lot of flack because my findings sometimes contradict one or two peoples "ideas" of what is right.

Keep smiling your child will grow into a fine healthy adult