HFI and exercise

[kcchater]

Hi all

My son has HFI and has since he was born, he is currently 8years old. He is extremely active and we are having blood sugar issues( dropping below 4) while playing sports. Our metabolic doctor is concerned that because he is so active his muscles don't have enough energy to sustain him while he plays. Does anyone out there have similar issues? If we can't get him to slow down he will no longer be able to play hockey and soccer which he loves. I don't want that to happen so please give me some ideas.

[colormist]

I have a tendency to get hypo during/after exercise. The only advice i can give is to eat before exercise, during if he notices a drop, and after if he notices a drop. Drinking milk would be a good way to hydrate and give your body energy during his activities.

I used to mix dextrose with water as an energy supplement during exercise, but then I noticed that it didn't appear to be pure dextrose (got a reaction from the dextrose), so I stopped doing that. If you can find a source of medical grade dextrose or glucose to give him during exercise, that would probably help his energy levels if they drop--but he'd still need to eat something after his activities. Dextrose only keeps up the energy level for a short period of time.

EDIT! Be sure to talk this over with your doctor to see if it's a good idea. I'm just going on what makes me feel better and that is not based on any medical advice.

[jejns1]

My son 17 years old and he plays high school volleyball, track (100m, 200m, long jump). We make
a home made "Gatorade" and keep Rockets (Smarties in the US) with us. It is unsweetened kool-aid mix,
pinch salt, small pinch baking soda. He is less affected by HFI than is sister, so he is lucky that
way. He had some difficulties last year during track because he was sneaking crappy food and this
was making him more hypoglycemic than usual.
My daughter, 16 years old, plays high school volleyball, javelin, high school phys ed, she tends to lose
energy quicker than her brother. We follow the same thing with "gatorade" and Rockets.
We buy Dextrose from a local wine and beer making store and it does not seem to be causing issues so far.
They also have a good breakfast in the morning with eggs, sugar free bacon, homemade bread (made with dextrose),
milk and cheese.

I am adding Colormist's caveat EDIT! Be sure to talk this over with your doctor to see if it's a good idea. I'm just going on what makes me feel better and that is not based on any medical advice.

[Jc]

11 years old and nearly diagnosed. Active in basketball and cross country. Really struggles with muscle soreness for days after the event. Will start a new vitamin soon and trying glucose water to assist. Is this normal for HFI. We do a recovery program of stretches, roller, and mineral baths.

[colormist]

Would electrolyte-enhanced water help? I drink Smart Water (because I like the bottle design!) and it has added electrolytes (magnesium, potassium, etc).

This article www.huffingtonpost.com/ben-greenfield/exercise-sore_b_1183747.html suggests 20-24oz of water after the workout and eating protein.

The glucose water is really just to abate hypoglycemia and keep the energy levels up. I doubt it would help with muscle soreness.

[JuliaD]

Helpful solution to reduce muscle soreness. Protein shake prior to exercise and dextrose water during exercise. Have trialled water and baking soda 30Min prior to exercise. She is having less episodes.

[ukbill]

Once we have used up all the available glucose in our blood and the initial store of energy in the form of Glycogen from our livers we start to convert body fat back into Glucose.. however a by product is FRUCTOSE!

So physically working hard or exercising Hypos are going to happen and exasperated if we get dehydrated.

A good boost which lasts 8 hours is to have a milkshake before we start.. 30+ min before of milk / plain yogurt 50 /50 mix with added a few desert spoons full of cornflour mixed in.

Its a bit of a powdery drink and do not put too much in or drink a hot drink shortly after.. (NOT A GOOD IDEA)

It is used to stabilize the blood sugar levels of children with Glycogen storage disease. Apparently cornflour is the slowest of the starches to digest.. so maybe potato or wheat starch might give a quicker stronger boost?

Not keen on using Glucose or Dextrose because of contamination issues and because they are too harsh and when they burn out in about 20 min the blood sugar crash can be severe.

[jenn123]

My 10 yr old HFI child is an athlete and works out 18 hours a week. She takes energy breaks to nibble on snacks (homemade beef jerky, crackers, cheese) and drink milk during practices. She also has the small Smarties if needed, and lots of water. I have given all her coaches a flyer with signs of hypoglycemia as well as information on HFI. They watch out for symptoms and send her to take her mini breaks fairly often. She also wears a medical bracelet, just in case needed, plus a good visual reminder for people whose job is to encourage more from her.

[Stefanie (Ziba)]

My 3 year old is a natural athlete and does not stop moving. He has more energy than anybody and is built like a linebacker. Sometimes, he breaks into a cold sweat and that is when I know he is depleted and I give him protein to eat and an amino acid / cornstarch drink. I assume his boundless energy comes from the nearly ketogenic diet and his natural athleticism, and the depletion comes from the lack of stores which is the flip side to the low-carb diet (no crash, but also little in the way of reserves)....

[ukbill]

Yes perhaps but also conversion of body fat back into Glycogen / Glucose also releases some Fructose as a byproduct of the reaction.

This can cause a depression of the blood sugar levels bringing on a Hypo.

It sounds like you are doing everything right for him!

[Stefanie (Ziba)]

Interesting, UK Bill....so many complex chemical processes going on.
Thank you for the support :-)

[brett]

Ziba- Have you continued to have success supplementing with cornstarch? We tried that for awhile and thought it was helping, but like many things in time it seemed it was causing problems. It is very possible that we mis-identified the problem causing agent, though-- so if you have had success we'll try again. What types of servings are you using and what frequency? Our daughter is 10 years old and just over 50lbs. We were sprinkling corn starch on popcorn. (We are waiting on a genetics test that we suspect will confirm HFI)

[rysmom14]

I took a look in my pantry at pedialyte. Its the off brand, but the ingredients are:

Water
Dextrose
Potassium citrate
Sodium chloride
Citric Acid
sodium citrate
zinc gluconate

Would this be a good alternative for a sports drink like Gatorade?

[Stefanie (Ziba)]

Brett-
Yes, we thought he had GSD at first, so we started using cornstarch in the throes of his worst symptoms. I continue to mix it in beverages when he is about to sweat a lot and right before bedtime. I hope you get your answers. We were so sure genetics would reveal HFI as the diagnosis, and our doc still thinks he has a new form of it, but for now, we are doing what is working and that is fructose-free, carnitine supplementation and cornstarch (1 TBSP in about 4oz of liquid is what we do-- our son is 3 yrs old and 39 lbs).

Rysmom-
I have pedialyte in my pantry and a few frozen "popsicles" in the freezer. The few times I ever tried to give it to him, he spit it out. I have tried it. It tastes pretty terrible. I wonder if the drinkable yogurt mixed with it would be more palatable.

[brett]

Thanks Ziba! We went to a rural mountain church yesterday-- 5 mile hike round trip plus a long service and Kristina did very well... We added corn starch and milk powder to some light portable snacks. She had a 15 minute rough patch during the service, but popped up when the snack kicked in. We did better timing the snacks on the way home. We haven't tried this trip in years because she couldn't handle it with the diet we were using.

Thanks for some more tools in the toolbox! You are such a help on this forum!

[antonia]

Just curious if any of you suffer the day after heavy exercise or activity or is it always immediate?

Thanks.

[brett]

Antonia-- Kristina is still waiting on a diagnosis, so take this with a grain of salt. But, the day after a lot of activity is extremely difficult with her.