Drinking water in the morning

[antonia]

We have finally learned that when my daughter goes hypo the last thing we want to do is give her water. Even though she always seems to want it, she is very thirsty when she wakes up hypo, but if we give it to her before getting her blood sugar up she will vomit.

I've also noticed that if she drinks water in the morning before eating food she will become symptomatic within seconds, even though she seems to feel fine until doing so. I can only theorize that my daughter, even if her blood sugar is not clinically low in the morning/she's not symptomatic, it is low enough that we have to get it up before doing anything else. Difficult since sometimes she does not want to eat right off, but is thirsty and wants to drink. We also started giving her a snack right before bed which seems to help her have better mornings, but obviously not enough. I don't know what else we can do.

Does anyone else experience thirst when they are hypoglycemic and, if so, how does drinking water effect you?

[colormist]

YES! I think the thirst probably has a lot to do with the kidneys trying to clean out the fructose from the liver. I typically drink about 2L of water a day.

If I drink straight water when I first wake up, my blood sugar plummets. I always viewed it as eating something that wasn't providing me energy--or "waking up my stomach without food". If I don't wake up my stomach, then I don't get hypoglycemia. Coffee and tea without cream also does this.

I've read that when you sleep, your body goes into fasting mode. My guess is that it stays in fasting mode until breakfast. For normal humans, their blood sugar is not crazy-low during fasting mode, but not for HFIers.

If she can't have milk, then maybe a glucose tab with her water would prevent the drop?

I made the mistake a few years back during a holiday of taking ibuprofen with water first thing in the morning (I have really bad cramps and they're a larger concern than my blood sugar levels on most days). I then took a shower. When I finished the shower, my blood sugar levels had plummeted so low that I collapsed on the bathroom floor. Eventually I was able to dry off, dress myself, and make it 10 feet into the kitchen. Apparently I looked extremely pale and sweating. My mom (a nurse) realized my blood sugar levels were very low. She made me breakfast (cereal) and told me to eat, but I really couldn't even lift the spoon and the thought of trying to chew was too much. I asked for a glass of milk with a straw (seriously couldn't pick up the glass). In the meantime, my mom took my blood pressure--which was about 20 points below my normal readings. This all happened within 45 minutes. I was perfectly fine an hour later. Had I not taken the ibuprofen before the shower, I'm sure I wouldn't have had the same problems.

This is also one of the reasons why I always keep glucose candies in my car, in my purse, in my jacket while hiking, and in my house.

[antonia]

Thanks Colormist. I'm afraid of contamination with fructose on the dextrose tablets or candies so, no, I've not tried those. I do carry Smarties in my purse in case of an emergency though. Do you know, are any of them more safe than others?

It's such an interesting phenomenon, the gut to brain response. The last time this happened, I told her she had to drink milk before she had any water. So she actually drank a couple ounces of milk, followed by 3 to 4 ounces of water. About a minute later she felt sick, so even with the milk it was too much water too fast. I ran to the fridge and got her a pancake. One bite and it was over. She handed me the puke bowl I had given to her and said, "Well, it's a good thing that pancake made it down to my stomach." Boom, done. Off to play, with her pancake in hand.

Your story about the ibuprofen has me rethinking meds when she's sick. Maybe they do more harm than good. Just more for the liver and kidneys to handle. Fever is also a stress on metabolism so not sure which is worse. I also worry about vitamin and mineral supplements. Started giving her a multivitamin and she seems to feel off the day after I give it to her. I'm not sure her kidneys can handle ridding her body of the excess. So sorry you have to deal with painful cramps. Scary story, glad your mom was there to help!

[colormist]

I'm not sure about the fructose content in smarties. I try to only use them in emergency situations. They do stave off hypoglycemia--if only for a short period of time, so any trace amounts of bad sugar is worth it for me.

Was the milk she drank skim, 2% or whole? I've noticed skim doesn't help as much as 2% or whole milk--then again I think I'd rather have a pancake than a glass of milk first thing in the morning. Maybe the solid foods absorb something in the stomach that is causing the nausea?

And yes, about drugs: ibuprofen is bad for the kidneys and tylenol is bad for the liver. I tend to opt for ibuprofen because I have two kidneys, but I don't take any meds if I'm dealing with fructose in my system.

[lucky]

Hello all,

Not sure this answers a bit of the nausea puzzle, but long ago, in one of my son's detailed hospital testing, our specialist confirmed that a certain amount of fructose is naturally converted (or created?) when the body fasts too long and begins to reconvert stored energy back into available/useable energy (in the interim till food is available).

As we can't eat all day and night, our body has a system to bridge the gaps between meals or during exercise etc...

After eating, the liver naturally stores a certain amount of easily accessible / useable energy in it so we can go about living our lives. The rest is put into longterm storage within the body.

While we go about our business (between meals), the energy we need slowly depletes from the liver.

If we have not eaten in the interim, and if the liver's energy storage is depleted or depleting, the body will compensate by re-converting that "longterm" stored energy back into useable energy.

It is here that people with FBPase deficiency can have problems. That reconversion... once liver stores are low... is a main issue to avoid.

Converting into longterm storage is naturally easy, but for those with FBPase deficiency, the reconversion BACK into useable energy is the tricky part (between eating, or fasting too long during sleep, exercise, illness or simply being very young). So, to avoid complications, fasting too long etc and food intake is monitored.

Sorry, I don't know the technical metabolic terms for many of these scenerios, as our specialist was really wonderful to purposely explain everything as simply as possible so we could keep up and absorb as much info as possible. This actually helped tremendously.

I mean, if I really want to be technical I guess I could always go back to google to search for proper names etc, but why... the idea is to understand enough to remember and later explain to others if needed. And when simply said, honestly, I found myself far more able to retain massive amounts of info. I think most would also...

Parents (and other family, friends, teachers) usually just want a general understanding of metabolic issues that's easy to remember and later relate to...

Anyhow...
Ultimately, a very empty stomach (that has fasted a long time, or too long) will naturally need to convert stored energy back into useable energy. If it does, a little fructose is converted in the process. I would assume for an HFI person, especially, this fructose dosing would be felt on some level and a fructose reaction would start to occur. I think.

My son is not HFI, but I tell you... when he was young (and less stable with health) we had to avoid this empty stomach problem, also. According to my son, he could tell an "empty stomach fructose ache" vs a "hunger feeling".

And the *empty stomach "fructose stomach ache" was later considered to most likely be caused by fructose being a byproduct in the reconversion of stored energy back into useable.

In the body's energy storage and retrieval system... it's the retrieval part that can be tricky for fructose dosing.

It took a very long time (as a parent) to initially piece that together. It wasn't until our specialist over heard a concern and then alerted us to what was probably really happening, metabolically.

Our biggest hurdle later was to convince a groggy (possibly hypo) child with wild, unrelenting nausea, to eat. Normally for "regular" people, eating is the last thing you want to try during nausea, but in cases like ours... it's the very best fix to everything, quickly. It literally made sick "days" reduce to hours.

So after a few good correction experiences, our son soon learned not only the feeling of a "fructose conversion" type stomach ache, but to also to go against instinct and eat a little instead.

With wild nausea (like the kind where they are hugging a bucket -just in case-) a cracker will do to start. And then another... and soon the appetite returns for regular food (as nausea quickly subsides) and within an hour, the same child that was too sick to go to school (or move away from his puking bucket) is now unnervingly healthy.

It's crazy how fast things can correct if understood and caught quickly... So I thank our dr for that. It made all the difference.

Essentially, this chaos (at least for my son, but perhaps for others, too) seems to all be about the conversion of stored energy back into useable energy resulting in a little fructose poisoning on a now very empty (no food buffers) and vulnerable system/stomach. Hence, resulting in nausea and potential hypo symptoms if not understood or corrected with food.

We found it best to try and avoid empty stomach extremes, if possible.

[colormist]

I'm wondering, Lucky, since HFIers can't break down fructose in the liver if they're also unable to reconstruct it? If the same enzyme is used to create fructose as is used to deconstruct it (the missing enzyme to deconstruct fructose in the liver is what causes the HFI symptoms), then I can't see how we could create fructose. However, if a different process is used to construct fructose (from say lactose or glucose), then that would explain a whole host of issues (illness during exercise, fasting, sleep, etc).

[lucky]

Hi Colormist,

I'm wondering if someone with a science background might be able to answer that, fully.

All I know is the basics. And this info came about accidently in a situation where our specialist was thinking things through 'out loud'.

So, unfortunately as testing was being done at the time, it wasn't a complete conversation to determine if it was solely for one or the other condition. Just more of a "the body does this... and a bit of fructose is a byproduct....Hmmmm..."

But I do think it's an interesting situation if so for HFI people too. That re-conversion mechanism should be used by all or else we'd all have to eat almost continuously or at least far more often.

But to an HFI person, regardless of anything, the fructose part is the most important.

One variable of why some may or not feel anything happening may come down to eating and hydrating according to activity or need.

I personally think it has to do with *IF* this longterm energy storage reconversion has to be used and how aware a fructose sensitive person is to what's happening as a byproduct.

Example:

In FBPase deficiency, the main problem seems to be to try an avoid how hard the body has to work at that re-conversion. So, there are ways to manage. Eat smaller amts more often. And stay healthy.

Re-conversion tax is extreme in infancy and early childhood. It can have a high mortality rate if not managed. This is because, at that age, the liver is very small and can't hold that much easily accessible stored energy. So if it can't hold much... but has a hard time reconverting more... then by default, more food has to be given to compensate.

By the time a child reaches 11-ish, the liver naturally grows to more to an adult size.

By adulthood, that fully grown liver -with all its storage space- usually is enough for normal living between regular meals. So all of this is usually no longer a problem (as re-conversion is rarely needed due to the liver's adult sized storage capacity).

So you can live quite well by managing how little that re-conversion has to work. Most of us minimize it's need naturally, anyway, by eating snacks & meals.

In FBPase deficiency, meal intervals seems to do the trick unless there is an extreme (over exertion, illness, fasting waaaay too long). Then, there is a need to compensate with food/drink.

We all do this (or should) regardless.

Larger adult liver size = more accessible energy to store = longer safety times between meals etc.

Regardless of age though, in FBPase deficiency, big meals don't help store more energy (for later use -as it has a hard time reconverting).

Once the liver is "full" of energy, the body puts the rest of the meal's extra energy into longterm storage in the body. (So best is smaller portions but more meals/day depending on age, activity, illness etc).

Normally, for everyone, once the liver stores are depleted, the body starts looking for re-conversion. In FBPase deficiency, this is where the defect lies. It has a hard time doing it.

"Normal" and I thnk(?) HFI individuals have no problem converting.

---
Note:

*With FBPase deficiency kids ++ you "feed the liver". Enough food to fill liver reserves, but not so much that lots goes into longterm storage. Why? Because if you can't reconvert easily, then to compensate, you must eat.

So, every bit of extra excess food (energy), above what the liver can hold, is wasted in longterm storage... eventually leading to weight increase.

The only food needed is what "fills the liver". Hence, more meals and less food load/meal. And always feed according to need (growth, illness, exercise etc).
----

So FBPase deficiency has a hard time re-converting in times of depleted energy stores in the liver.

An HFI individual can also get to needing re-conversion by not eating for a long time or exercising etc. Anyone can, given an extreme. All our livers hold energy and when low, reconvert if we don't have food available (sleeping etc). It's a bridge to hold us out till we eat. But that safety net is just a temporary solution till food is given.

This normal re-conversion process can be discrete (or not needed) if meals are evenly spread out during the day according to energy levels etc. Diabetics eat smaller meals more often for the simple fact of keeping even blood sugar levels and weight/health in check. It is actually far healthier for the general population, too.

It can also be discrete or missed in adulthood. We can store larger amounts of easily accessible energy within our liver for no other reason than it is larger than in childhood. Larger means more storage which equals longer safe time between meals etc.

But exercising...

That would naturally deplete anyone's energy stores faster (and especially a child's). Anything that taxes or uses more energy (like illness, growing, exercise) has a higher likelihood of needing re-conversion if food is not used to compensate at some point.

And with that, re-conversion would happen on a very empty system. Especially after over exertion, over night fasting (while asleep), or illness.

So, if fructose becomes a byproduct of this re-conversion...

I would think that an HFI person, or anyone very sensitive to fructose, might feel some type of effect of being dosed on an empty stomach/system (and no food buffers).

And perhaps those with metabolic issues related to fructose (HFI, FBPase deficiency) are by default more prone to metabolic flux (hypo) (along with nausea/vomiting) as the body inadvertently doses itself with fructose during storage energy re-conversion.

And for those with FM...well, perhaps this also explains those odd empty stomach "fructose feeling" stomach aches, nausea and vomiting during certain instances.

Perhaps the best trick for all, is to try not let a system go very very low and empty. I know that's hard for a child who is ill (and not wanting or able to eat) or when exercising... but perhaps it's a thought to consider.

Maybe this illusive "ill feeling" (from fructose being a byproduct of reconversion) might especially explain the countless comments of exercise causing a feeling being hypo, and why some may feel it more than others.

Perhaps some may instinctively manage eating and hydrating better so fructose doesn't cause a compounding issue...

If each HFI person is unique to how much (or little) adolase B is working in their system & how radically the body responds when taxed (through fructose consumption) it would also show here, if internally "dosed".

Exercise depletes energy stores. If these get too depleted and fructose becomes a byproduct of longterm storage reconverting (to immediately needed energy), then... BOOM. Fructose on an empty stomach/system.

Best to eat and drink sometime before exercise (some people need longer / less digesting time before exercising), and a little snack along with hydrating during exercise (if strenuous or going on too long).. and then afterward, the same... to replenish.

So basically, before and after. And if needed... during. And that way you burn off what you have available... not having to rely on reserve storage kicking in to compensate.

In some cases, this type of "maintenance" during activity might explain how one person (or child or teen) can overall better handle exercise than another.

Yes, being in shape definitely helps. And yes, if not used to exercise, it is always recommended to slowly increase activity (like walking 5min per day to 10min after a week and very slowly over a month/s increasing in that or to other exercise -if wanted- as exercise stress reduces).

I think it's about finding strategies to help a system cope.

Whether it is from avoiding the ingestion of fructose, or trying to avoid possible residual fructose dosing due to reconversion. Whatever keeps the body happier. For however long it needs...

But, if a body can produce even minimal amounts of fructose as a byproduct of stored energy reconversion (into emergency useable energy), then by default, I would think that might be a hidden missed issue for those with HFI, especially.

I think.

[antonia]

We do drink 2% milk. She seems to do fine if she just sips milk in the morning but drinking milk and water at the same time, no. Must need to give time for the milk sugar to enter the blood stream before drinking any water. I don't know why the pancake helped so immediately. But I do know that when I had nausea from pregnancy that the only thing that kept me from actually getting sick was eating something. I carried around little baggies of crackers or cereal all the time and would force myself to eat it anytime the nausea hit. So when nausea is caused by something that's not really occurring in the gut, somehow the action of swallowing food, giving the gut something to gnaw on, seems to help the brain let go of it for some reason. It took me a while to figure that out though. It's just not intuitive to eat when feeling nauseous.

I'm assuming the process of releasing energy stores from glycogen involves different enzymes than those used to process free sugar in blood. But, that's an interesting question, I really don't know. Managing that delicate balance or preventing one from dipping into energy stores is difficult. Seems like a catch 22. I've noticed if Palmera is eating very safe, fructose free foods she's not as hungry, does not want to eat as much or as often, because she's not going hypo I presume. But that means it's very easy then for the body to dip into stores, and once it happens it's too late. She's developed symptoms before, not from anything she ate, but when she's really engaged in something and doesn't want to stop to eat. It seems I am constantly hounding her to eat. I hate doing that, but it is necessary and not something she's able to manage herself yet. It makes school, any activity away from home difficult and stressful.

It's the same way with the whole drinking water in the morning thing. Palmera keeps asking me why she can't drink water until she's eaten EVERYTHING (I don't tell her she has to eat EVERYTHING, just SOMETHING). She's annoyed by it, I think that's why she keeps asking and exaggerating. So then I'll say, "You tell me why." She knows, she's just annoyed by it. Maybe I should just let her drink it and suffer the consequences. It may be the only way for her to learn how to take responsibility for her own well being.

[antonia]

On the subject of drugs and pain killers, it still astonishes me that even those with confirmed HFI diagnosis don't have access to some form of medical or pharmaceutical grade dextrose. That seems like the best medicine ever for a HFIer, especially when you have to take other meds that are taxing on the liver and/or kidneys. You shouldn't have to be walking around with Smarties as your only emergency form of dextrose.