Napping

[rachael]

Hi there, my son (2.5 yrs old) has the worst time waking up from naps. He's miserable, crying (with tears and everything, not just yelling), and inconsolable when he wakes up from naps. This happens whether it's a short nap or a long one and whether he wakes up on his own or we wake him up. That said, he wakes up happy in the morning. I'm wondering if it's related and possibly a blood sugar thing or it it's just a coincidence. Does anyone else with little ones who have HFI have this issue? Or, do any adults with HFI have any ideas if this might be related?

[jenn123]

Looking back, this would happen from time to time with my daughter. We did not get a diagnosis until 9 yrs old so we did not know what was going on at the time, but I think it must have been blood sugar related. It was as if she could not wake up and get out of her nightmare. I remember walking her back and forth in the hallway trying to wake her up enough to calm her down.
I am just guessing but I wonder if there is a cycle of detox while asleep. Nightmares here always seem to happen at the same time each night they occur. Maybe a nap catches it mid cycle ? Maybe try a glass of milk or glass of milk with cornstarch before nap.
Hang in there 😊

[lucky]

Although my son does not have HFI, this was also a common occurrence with him when he was young. Especially at night. His specialists attributed it to hypoglycaemia. Maybe it's similar with your child as well?

[antonia]

We don't have a confirmed diagnosis, but have always dealt with hypoglycemia. It caused all kinds of strange sleep disturbances and my daughter rarely woke happy until her blood sugar was under control.

She's six now so we don't have naps, but she never napped well even when she was suppose to. Had I known about her hypo maybe I could have gotten her to nap better (didn't know about it until she was 5). Other than making sure her fructose load is as low as possible, what has made a world of difference for us, now, is giving her a hefty snack right before bed. Usually a carb source with some dairy: oatmeal, toast, sugar free muffins-pancakes-biscuits with milk, plain yogurt, drinkable yogurt, yogurt popsicle, cottage cheese. And I mean literally right before bed, so this means she gets to bed later than most kids. We have to push her bed time back to make time for it, but I've found it to be well worth it. She sleeps great and wakes happy most the time now. Not sure when you're putting him down in relation to meals/snacks, but maybe if he's an active little guy and he's growing and all that he's burning off most of his food before nap time?

That being said, it's not uncommon for toddlers to get night terrors. I used to get the same kind you describe, with the inconsolable crying that my parents could not wake me from, when I was three-ish and I have no known health conditions. So, could also be totally unrelated to HFI.

[rachael]

Thanks for your ideas! He also has night terrors, but they are getting better. I'll try the big snack and milk ideas when I suspect he's going to nap. Who knows if it's related or not, but those sound like a good starting point if it is!

[rysmom14]

HI Rachael!

I feel like we are 2 momma's walking the same path! we have been dealing with night terrors, and sleep sweats for a while with Ryan (age 3)

He would be sweating almost every night and he would have the night terrors almost 3 times a week. it would always be about an hours after he fell asleep. we had tried taking his blood sugar a couple times when he woke up screaming like that and his sugar was always fine. we tried making sure he had a good snack and milk before bed, and that didn't really change anything.

I can honestly say that in my opinion I think it is because he was still ingesting fructose. I posted about my son's recent blood draw and his liver levels being elevated and the things we have been trying to do over the last 2 months. This last month my son has only had 1 night terror. This is huge for us since he was having them numerous times a week. He still is sweaty at night, but I think he runs hot, and its not as much sweat as before. also, I think that if my son is over tired he is prone to the night terrors. The one he had recently he hadn't napped for 2 days and we had been away from the house for the evening and got home a little later than regular bedtime and I think it was out of sheer exhaustion.

Since his blood work came back elevated, we have made major cuts to his diet, and while it was a little sad taking away his options he is so much happier and sleeps well and not cranky in the mornings or after he comes home from daycare.

He used to wake up screaming or crying from naps and even if he woke up happy in the morning, he would immediately want to drink milk in the morning, and a lot of it! same thing when he would come home from daycare. he would scream and cry on the way home asking for milk and as soon as he would walk in the door he would make a bee line for the fridge.

we took his diet down to the very basics again and have kept it this way for about 4 weeks.

He is only eating the following:

plain meats ( beef, turkey, pork, chicken) from brand that is guaranteed to have no added broth, or anything. and seafood
regular pasta
Cheese ( we have been trying to take out yellow cheese, but I don't think this has proven to be helpful. we were thinking that maybe the annatto in the yellow cheese could be causing his numbers to be off, but I think we found other culprits)
Plain yogurt
milk
Nabisco brand oyster crackers
turkey lunch meat- only 1 brand- applegate. its by the deli in a case
Cheese it's ( in moderation)
Oatmeal
Eggs
regular butter, salt, pepper and parsley

we have tried to cut out anything that isn't "whole" and tried to get ride of as much processed as possible. Now I buy him a pack of chicken, ground turkey, ground beef and freeze them in 1/4 lbs packets and then thaw as I need them. I have gotten pretty creative on how to use the same meats!

it has made such a huge difference and I'm not as anxious about getting his labs checked in another month since I feel like we have finally cut out everything that could have ben causing him problems. I now his diet is very simple and strict, and if his numbers come back better, then we may add in a couple of things slowly while we continue to keep a log.

Right now we are keeping a log with everything he is eating and also documented his moods and tracking his night sweats/ terrors.

If I can help in any way I would be glad to! of course I am still working through all of this as well, but I fell like we finally are in a good spot!

Emily

[ukbill]

OK yes I think Diet has a lot to do with it.

The feeling of a reaction from HFI / Fructosemia is really very unpleasant and I can imagine a child not on a safe diet waking up the the pain of a reaction and crying a lot yes.

The thing to remember is its not just a Hypo reaction is a classic poisoning event and as such every part of the body hurts, every cell wants to vomit it is the single most unpleasant feeling I have ever experienced, and I have experienced quite a lot in my now nearly 61 years.

It makes normal food poisoning type events very mild in comparison. I cannot explain to a none HFI / Fructosemia person just how bad it is.

This is why I am so very short tempered and angry when people suggest unsafe foods or unsafe practices ( fake sweet foods containing Aspartame and other artificial sweeteners or Glucose / Dextrose) for potential or known HFI / Fructosemia children in their care.

[antonia]

And therein lies the problem with non-HFI parents trying to figure out when a child is having a reaction, especially with young children who cannot express what they are feeling. This is also a frustration for those of us trying to rule in or rule out a HFI diagnosis (yes, that would most definitely be me). It seems that blood sugar is not a good indicator. Rysmom said she was taking blood sugars and they were within safe range. Yet, upon cleaning up the diet there is symptom resolution. And I have read other accounts on this forum where confirmed HFIers say they begin to "feel hypoglycemic", yet when they take a reading blood sugar is fine. So, obviously it's not that simple. But how do we know?? That is the big question.

[ukbill]

Problem is... what is feeling Hypo and what is the feeling of Fructose poisoning?

We get both sometimes.

From experience a Hypo dose not hurt I just get shaky, cold or hot, confused, Clumsy, ravenously hungry or not wanting to eat, too confused to get food, tired and wanting to sleep etc

Sometimes the hunger can hurt too feeling like my stomach is digesting itself!

The after effects of Fructose poisoning can be nearly the same but lasting for a day or so or upto 6 months if its been a really bad occasion.

Along with this if I have eaten anything contaminated I have varying degrees of discomfort rising through pain up to a point where I would not be safe with a gun, not that I had the strength to pull the trigger anyway but if given an "OFF " button I would press it.

Hard exercise also releases Fructose into the bloodstream as a result of the conversion of body fat back into blood sugar which also releases some Fructose as a by product of the metabolic conversion.

This is particularly an issue with fast growing children who are so full of energy all the time and growing which also makes balancing the diet so very difficult.

So slow digesting Protein foods (meat and yet more meat) are more or less the only solution and frequent safe snacks (NOT SWEETS!)

In the UK Penn State Pretzels seem safe enough in the Salt only version they give a very quick boost to blood sugar from the highly refined starches they are made from.

Eggs (hard boiled) cheese, milk, cooked meats (many are safe in the UK) white bread (again mostly safe in the UK) will provide a mix of fast boost and slow digesting foods that will help.

There is also the fall back of a Milk shake made from Yogurt and Milk and with added corn flour if you have notice of exercise such as a Football match or Rugby, Swimming, Hiking or Rock climbing etc. or a journey when you are not certain that safe food will be available.

Recommend at least 30 min before exercise though to give it a chance to get through the stomach (otherwise it might be wasted...) this should give a boost to blood sugar for about 8 hours as it slowly digests into pure Glucose.

[ukbill]

I am thinking of setting up a YOUTUBE channel to show just how quick and easy it is to make HFI / Fructosemia safe snacks for children (and adults)

What do people think?

Would it be worth while?

[rysmom14]

Antonia, This blood sugar/ HFI thing is so confusing and frustrating. much more so for you because you are still trying to figure what is going on. not sure if this is helpful or not, but my son got the flu a week or so ago and was vomiting. so naturally he wasn't eating all that much or drinking either because he felt so sick. we had always been told to be aware for the low sugars if he were to get sick and not be eating or drinking. the 2nd morning after being sick, he just wouldn't drink anything especially milk. Ihe behavior changes so much in a about an hour. He was spaced out, and kept asking me to hold him. his body was like jello. I checked his sugar then and it was 72. that was the lowest It has ever been for him, so I kinda panicked and forced him to drink milk by giving it to him through a medicine dropper. after I had about 1/2 cup into him he perked up and was normal again. after that he was eating crackers and was back to his regular self. I rechecked his sugar and it was back to the high 80's this happened after his nap that day and so when the evening came, I called the Childrens hospital and spoke to the geneticist on call and asked for some guidance because I didn't want him to drop very low overnight and us not know. When she asked how low his sugar was, she was completely not worried about it being 72. She thought that I was going to say his sugar was 40.

I guess my point is that I don't know if he felt bad because he was sick, not eating, or having low sugar/ hypo symptoms, but I do know that he visibly declined and then perked back up after milk. which made me think that maybe 72 isn't a low blood sugar technically, but maybe he feels symptoms at that number. so hypoglycemia wouldn't be so text book when tying it to HFI or another condition.

[colormist]

This is interesting! A number below 70 is considered "low blood sugar". I wonder if it's because the liver is hoarding the glucose. Technically it's still around, but it's not available for use by any other areas of the body.

My doctor said something similar. That my blood sugar numbers looked okay, but that maybe I noticed the hypoglycemia before it could be noticed using testing methods. She reported my numbers in the 70's too, but I already noticed my hands were shaking.

EDIT: This article is a pretty good summary of the symptoms and also mentions the symptoms present while sleeping. www.webmd.com/a-to-z-guides/tc/symptoms-of-low-blood-sugar-topic-overview

[antonia]

So, maybe it's not hypoglycemia that causes initial symptoms, but some form of metabolic acidosis (ketones or lactate or both)? If the liver is "clogged up" with fructose byproducts then it cannot metabolize glucose either for an acute period? The more fructose ingested the longer that period would be. Metabolic acidosis results in similar symptoms to hypoglycemia (with the addition of belly pain, vomiting, excessive thirst and urination, as far as my googling can tell). Then hypoglycemia comes later if glucose is not replenished in time or the liver is still unable to metabolize it. But surely doctors would understand this if it were true. I've always gotten the impression that the hypo comes first and it, in turn, causes all the other metabolic abnormalities, but could it be the other way around?

Ukbill your words break my heart. No one should ever feel that poorly. It's incredibly disturbing to me. I wish doctors would pay more attention to patients symptoms and experiences rather than only the numbers. I remember when Palmera was at her worst she begged for us to take her to the hospital. That's not normal for a 4 year old with a stomach bug.

[ukbill]

One thing I have not been sure about do the Blood sugar testers detect Fructose Phosphate in the Blood?

If so then they will show far higher levels than the actual available blood sugar that can be used.

Its a question that needs asking of the manufacturers of the testing system they are using.

[colormist]

Reading up on some comments about diabetes and low blood sugar. One person reported cold sweats and shakes with his blood sugar in the 30-40 range. Found another diabetic individual that reported their blood sugar was at 20 when they lost their vision.

I wish I could find a proper chart for symptoms in relation to blood sugar levels. We might be able to chart our equivalents that way (even with Fructose-1 Phosphate in the blood stream). Or at the very least we would know the severity of our symptoms!

I did find additional information online that said hypoglycemia while sleeping can result in an "inability to wake the hypoglycemic person up". So, maybe a 100% fructose-free snack before bed (saltines and milk, maybe?) would be advisable.

[rachael]

I am always learning so much from you all! This is all so confusing. The doctors and nutritionists are well meaning but they understand very little about the condition.

I'm not sure what is different, but my son's night terrors pretty much stopped. The napping hasn't been an issue because he hasn't napped lately, but he is going to start a new daycare that has naps so I will have them try these ideas and see what happens.

Rysmom: I'd love to hear more about what you are cooking for your son. Have you posted it before? My husband and I are both starting new jobs soon and I'd like to start doing a better job of planning my son's meals in advance. It's hard not to get bored, but most toddlers like to eat the same thing all the time anyway, and we should get back to a more "normal" diet so my son can start to see that he can't eat the same things as everyone else.

[colormist]

Speaking of night terrors, I woke up screaming this morning at 7am (45 minutes before my alarm went off). I'm thinking I should ALSO have a snack before bedtime.

[rysmom14]

Colormist, we must have jinxed you!!!

Rachael, I haven't posted anything as far as diet in a while. I used to keep a word document saved on my computer of his "Safe Foods" but honestly after his labs came back high, I have made so many adjustments and need to go back and update them. I will have to sit down and update it and then I would be happy to share

It's mostly the same foods all the time, and I try to change the shape of the meats and call it different names. I feel so bad when he asks for a hamburger and then changes his mind when its made and wants meatballs. It's seriously the same exact thing ( minus the crushed crackers as breadcrumbs) and shaped as a ball, but he doesn't understand that