Hypoglycemia at night?

[rysmom14]

Ryan's Genetic Dr. wants us to take his blood sugar a couple times in the morning to check that he is not becoming hypoglycemic overnight from a long fast. He eats dinner around 6pm and on days he goes to daycare, he gets up at 5:30 am and when he is at home he sleeps in until 8 or 8:30 am. They are having me check it a couple time when we get up for daycare and then a couple times when he sleeps in. She is concerned that with such a long time between meals he may be running to low and making keytones?

I have noticed that when I check on him 2-3 hours after he goes to bed, sometimes his hair is wet with sweat. He always wants to be covered to go to bed, but I end up uncovering him since he seems hot. I’m now wondering if maybe he is having low sugar then? Any thoughts? in the morning he is not hard to get up and is playful, so I don’t think he shows signs of low sugar.

does anyone else find you can only go so many hours through the night without food or have exceptionally low sugars in the morning.

[colormist]

I'm not sure. I tend to snack right up until a couple hours before bedtime. I know that if I swallow anything (without calories--like water) after waking up, then I get extremely hypoglycemic within minutes and have to eat right away. If I put off drinking or eating, I can make it an hour before I start to get hypoglycemic.

[heatherp]

Yes. For a very long time after diagnosis Wyatt had hypoglycemia every night. We fed him a snack before bed (lactose free milk and basically a meal with it) and then I would check his blood sugar around 2am (because by 3 he would be thrashing about in crib from hypo often times) and wake and give him milk. His blood sugars gradually were higher and higher until he seemed to stay nicely stable. I no longer wake him to feed him milk. I do give him milk and a sizable snack before bed. I also do wake when I feel I need to and check his blood sugar. We see a return to hypo in the middle of the night (fasting intolerance in general) any time he has an accidental exposure, and even a small one at that. It tends to take a week for that to go away from even a small exposure. Also, stomach flu and fever brings about the same response it seems. All this said, my oldest, not hfi, sweats a lot in the middle of the night and his is not blood sugar related. I have found the only way to accurately determine whether a symptom is hypoglycemia related or is not is to test blood glucose. Even in someone like Wyatt, whose blood glucose I track with a fair degree of regularity, I find myself mistaken at times and so when in doubt, I get the meter out. Lastly, his geneticist warned us of a degree of inaccuracy with blood glucose meters of +/- 40!

[rysmom14]

Thanks! we checked Ryan's Sugar this morning after a 9 hour fast overnight and his BS was 89. We are going to take it a couple more times and watch and the then also take it a couple times when he sleeps in. I was able to stick him when he was still asleep so he didnt even know it happened

Heather, How long until you noticed the hypo go away after he was on the HFI diet? what kind of sugars does Wyatt have in the morning when he doesnt eat anything in the middle of the night, just regular dinner and a snack before bed?

[Stefanie (Ziba)]

I am in tears that I have found this forum. Over the past 16 months, so many doctors have had so many incorrect theories about our son's issues. he was born at 33 weeks, severely growth restricted (IUGR). He was anemic but otherwise healthy. Then, at 7 weeks, his liver enzymes became abnormal and he was jaundice.

He was put on Ursodiol/Actigall. Docs wanted liver biopsy but we said no because they admitted they had no idea what they were looking for,...he continued to have nighttime/fasting hypoglycemia. As it turns out, he had been given sucrose in the NICU to calm him for blood draws and the Actigall was in a sucrose solution! Then, once he started solids, he would vomit immediately after eating fruits/veggies. My OBGYN actually mentioned GSD which led me to research and find HFI. HOLY ---! I could not believe that everything (down to his elevated bilirubin and his "lesions" on liver ultrasound) could be explained by HFI.

I am on a six-month wait list to see the geneticist here who knows about HFI and on another wait list to get to Duke's medical Geneticists. Many people have a doctor but no diagnosis. I feel like we have a diagnosis but no doctor!
I find such contradictory information online. My son had his first high fever this weekend and all I had was sugar free Advil. I swear that he is jaundice, pale and not well after taking it (it has sorbitol in it)). So , I begged our pediatrician to call in a compounding Rx for plain ibuprofen (no sugars). No one has even heard of HFI, let alone understands its nuances. My son has had all vaccines but is overdue for MMR (it contains sorbitol).

I am so grateful to have found you all. If you can speak to any of our circumstances, I am all ears. I also welcome knowing which docs have been helpful to those of you on the East Coast in the US.

P.S. We also took glucose and ketone levels. His glucose was 58 after only 4 hours. His ketones were 0.3 We have not been able to get anyone to order the genetic testing yet.

[lucky]

Hi ziba,

My name is lucky. Nice to meet you.

Although my son has not been diagnosed with HFI, he has been down this road of waiting for specialist appts and of testing. Years ago, we also had to wait 6mo for his initial Genetics appt. It was considered a "rush" appt as others had more of 1-1.5yr wait. Truthfully, the only immediate appts often come from emergency room / hospital situations or.... if the Genetics dept has a slow time in appt scheduling... which I don't think ever happens.

In our case, my son's initial Genetics appt had a 6mo wait, his Gastro 1.5yrs. Once we were a part of those depts, follow-up appts were never an issue with time. It's just getting in for your first visit/history that is.

Initially, our son was strongly suspected to have HFI.

So, during that 6mo Genetics wait time, we chose (with our pediatrician) to reduce his food consumption to HFI safe foods.

Because he had a baseline of medical health info, we proceeded slowly to adjust his diet. In our case we wanted to make sure his body didn't get shocked (or get constipated) from a new diet. Very quickly after starting the HFI diet, his body started responding positively and detoxing. His health improved considerably. The only downside that I remember was that constipation eventually became an issue.

So be careful. If you go down this route of diet change while waiting for Genetics, please work with your child's primary health care doctor to watch for potential issues. *Any* issues.

While we waited the 6mo, I documented health/diet changes. I also wrote down his past health issues (from birth) in a timeline to quickly highlight info for the future appt. I also started tracking good vs odd "coincidences" in his health over the 6mo we waited.

As the pieces came together, patterns became more clear. Things like eating, sleeping, energy, growth, weight, appetite, general happiness, health etc were tracked. And all were compared to the type of food given and at what intervals.

For us, it was also important to note how long our son could safely (and happily) go between meals and along with how exercise (energy) changed the feeding timeline.

Food diaries helped a lot with this type of tracking.

So, by the time we met our son's specialist for the first time, we had a quick medical history of odd illnesses (from birth on), and a before and after of diet changes with respect to his health (during the 6mo wait). Plus... I was able to collect & properly ask pinpoint questions concerning issues I could track during the 6mo, but was still unable to understand in reference to overall health or stability.

What we found was that by doing all of this work ahead of our initial appt *under dr supervision* we were FAR more prepared and helpful to the Gentics dept when we arrived for our initial consult.

Lots of clear info was available to the specialist, immediately.

It turned out to be a far more productive of a meeting and decisions (for further testing -genetic, and other) were able to be made immediately.

In our case (as he was already strongly suspected for HFI) being proactive with his diet (again, *under medical supervision*) and documenting data saved us an "after the appt" HFI diet compatibility "wait time" others have.

What we observed during the 6mo, many have to observe (for months) after that initial appt. (to compile their baseline comparison). We just did it ahead of time and got our son to a healthier state, earlier.

But again, please only adjust a diet with proper medical supervision.

* If you already have your child's Genetic specialists' name and are just awaiting your appt, consider calling their dept to ask if an HFI info package can be sent to you (by their metabolic dietician) to use as a guideline while you wait. Our pediatrician gave the ok for it, so the Genetics dept sent it ahead of time so we could slowly transition our sons diet. But only alongside medical supervision. I can't emphasize that enough with young children.

In the end, our son did not have HFI. Along many other tests were cursory tests for GSD, Mitochondrial issues +++. We now have a grab bag full of all things he doesn't have. But not what initially caused him such dramatic issues (other than initially testing positive for Fructose Malabsorption).

Luckily, he has been healthy and well managed for a few years now. So stable, happy and healthy... is good. Very good.

*What you might find after your Genetics appt:

-If a genetic test for HFI comes back negative, but symptoms are still suspicious (especially along with energy storage/retrieval issues)... another Genetic test called:

FBPase deficiency
(Fructose 1,6 Bisphosphatase deficiency)

...may be ordered.
(Our son is still suspected for this one)

Like the HFI genetic test, this is also tested through a blood sample. And if lucky like my son, the hospital might have enough leftover blood (in storage) to not need another sample for testing. Anytime your child does not have to get pricked by a needle for a blood test, the better.

Let me know (here or in this site's private message section) if you have any questions. I'll send you a "Hello" on the private one so you know what and where to look in the future.

Try not to worry.
There are wonderful people on this site for support.

Welcome.

[lucky]

Rysmom14:

With regards to sweating at night:

Along with proper blood glucose monitoring to track potential fluctuations, please consider looking into vitamin D deficiency. Here in Canada it's a simple blood test (free if ordered by a specialist or due to other issues). It can be done alone or added to any blood test. I think it's a $30 charge if not covered.

Our son had a serious vitamin D deficiency and it was missed for a VERY long time as we were giving him the "proper" amt of vitamins. A few years ago, the Canadian guidelines for vitamin D requirements changed. More is needed for everyone. But as always, check with your child's doctor before any changes in diet or supplements are made. Everything always needs to be properly monitored.

Anyhow, turns out, sweating is a classic sign of vitamin D deficiency. Vitamin D deficiency is serious and has some very important issues attached to it (have a look at symptoms so you know). And if it deteriorates you don't want it to tip into Rickets.

In our case, vitamin D was missed as hypoglycemia was always suspected at the time. When truthfully, both were occurring.

Another point...

With all the sweating:

*Be very careful that not too many body liquids are lost. Anytime there is sweating there are risks *very real risks* of dehydration. If too many electrolytes are lost (and consistently at night *especially*) at some point, the body will have a hard time replenishing during the day and staying stable. This happened to our son. A total mess of what was fructose symptoms, hypoglycemia, or other. Eventually only accidental iv's corrected his chaotic issues and quickly calmed everything down. That's what led to a series of medical epiphanies in our son's health. Vitamin D and clinical dehydration to name two.

And on a side note, whatever the reason for the sweating (hypo, vit D or other), if you see white salt stains on your child's pillow (or shirt collar -fading along the edges-) beware. It indicates that actual electrolytes (salts) are now being lost. Lastly, dehydration will also cause blood sugar imbalance. So.... everything seems to always be connected.

[rysmom14]

Thanks Lucky! I will have to go and look at the labs that the Dr's have order for his next round of blood and see if Vit D is listed. I was only thinking about the low blood sugar as a cause for the sweating, but I will look into this as well. Both Ryan and his twin sster Hannah sleep in the same room, it always struck me as odd on how we dress them for bed. Hannah wears the regular sleep wear for the season, long pants and long shirt and she has a blanket that we cover her with and Ryan sleeps in shorts and a t shirt or sometimes just a t shirt and diaper. he wants covered for bed, but I always go in after he falls asleep and take it off of him since he is so hot.

as of now I havent noticed the salt marks on his sheets, but thats something to look out for.

Thanks!

[stefaniebillette]

Remy (19 mos) is often sweaty after falling asleep as well. His hypoglycemia has been so much better since we got on the strict diet. We were putting corn starch in his bottle at night time and I think that helped a bit. I also feed him at 10 o'clock right before he goes to sleep and we wake up at about 2:30 or 3 for him to eat as well. We checked his glucose and ketones while we are transitioning to a fructose free diet and his blood sugar was always in the sixties after just a few hours. His ketones were relatively normal.

[stefaniebillette]

Thank you, Lucky. I have kept a diary since the day he was born. That's how I noticed patterns and researched carbohydrate metabolism defects. I found a GSD expert who then pointed us toward HFI. He is not taking new patients, so our search began for an expert. We live in FL and there are few metabolic specialists. We finally got in with the one we waited 6 mos to see and after looking at my notes and observations, he agreed that HFI is the most likely explanation and he ordered the test. We should have the results in 2 weeks, but I am aware of the false negatives. As I read your story, I was shocked to see that your son doesn't actually have it. As much as I don't want Remy to have this condition, having an answer would be reassuring in some way. He does have significant liver damage and if it's not HFI, it will be a long road to figuring out what the cause of his problems has been since he was a newborn.

[ukbill]

We do have an HFI family already in Florida who should be able to help and be good to share knowledge and experiences with.

I will ask her if its OK to share her details with you.. OK?

[ukbill]

Please be aware that store bought Glucose is not necessarily HFI safe Glucose can legally be upto 40% "other sugars" and legally still be sold as 100% pure!

Let me explain what is going on and why HYPO episodes happen with HFI people when they have not eaten anything with fructose in it for hours or days.

If we are fed foods that contain a low% of fructose we do not always have a "reaction" and go Hypo at the time.

This is because the Glucose in the food, initially, and starches which break down and produce glucose initially. later on the Protein is converted into Glucose over time.

Now the HFI person's blood regulation system will see both the Fructose Phosphate which is stuck in the bloodstream, and the Glucose as valid blood sugar.

However the Fructose Phosphate is stuck and of no use to us. So if we do not have enough Glucose coming from food our systems think there is still enough in the system to be OK and dose not release glycogen (initially) or convert body fat back into glucose (which also releases some Fructose as a byproduct!)

Hence we become Hypo.

Once you get onto a really solid Fructose free diet these problems will largely go away and after a good 6 months the liver in all but the most severe cases should recover and your child will slowly stop showing signs of liver failure and "wake up" to being a normal, cheeky lively child!

MY advice is do not delay and get your child onto a Fructose free diet asap.

I have seen Rice and chicken being advised as good food and yes it is if the rice is unadulterated.. most rice in the USA is treated with vitamins and the vitamins are stuck onto the rice using ... yes you guessed it SUGAR!

So if you are using this type of rice soak in a lot of clean water, then wash it thoroughly, par boil it in a LOT of water, change the water and finish cooking it in clean water. This will remove almost all the sugar.

For vitamins and minerals Fish is very very good (salmon and oily fish in particular) and liver (chicken liver is good occasionally) to provide B vitamins.

Vitamin C is needed but easily sorted L-ascorbic acid is available in most good food and cooking shops.

A little in water makes an excellent refreshing drink and mint tea (made from fresh mint leaves) is also great served both hot or cold. It is almost impossible ( I believe) to overdose dangerously on Vitamin C however because we cannot store it in our bodies a little often is the best idea.

PLEASE do not make food and drinks for your child that are to "your taste" because your tastes will be dangerously sweet for your child.. artificial sweeteners are considered dangerous (by many experts in diet) and are just not helpful to your child at all.

Your child needs to be able to detect sweet flavours to stay safe when out in the world and away from parental control.. a dislike for sweet flavours will provide the most protection.

This is a point of argument between a few of us in the forum here but not one I will concede on "cultural" grounds which is just silly and dangerous to the HFI child.

I hope this helps and I am available to help anytime. message me and I will provide you with my mobile contact details. the same go's for any parent of an HFI child.

Much research and experience as an HFI'er is in my advice but as always please refer to a professional medical practitioner before following any advice from the internet!

[bananafish]

Ukbill It looks like some chefs these days recommend soaking rice and then cooking it in lots and lots of boiled, salted water, just like pasta.

It sounds like your method, and should help with the residual sugar. And supposedly it's far easier to make perfect rice that doesn't burn or clump or get all gummy.

www.kitchenkonfidence.com/2015/03/cook-rice-like-pasta

www.latimes.com/newsletters/topofthetimes/la-fo-calcook-20121027-story.html