Hypoglycemia/ cornstartch drink

[kcchater]

Hi everyone,

My son( has HFI and is 2y 9m) has been having problems with his blood sugar levels dropping through out the night. So we've been using a glucometer to test his levels. Well we just told we have to introduce a cornstartch drink at bed time. Have any of you had to take this corn starch drink. You mix 1/2 tbsp with 100ml of milk and build up to 3 tbsp over the next 20 days. Let me know if anyone else has had to do this.

Thanks

[charlie]

This is something they are thinking of for megs. It is something they use for glucose absorbtion problems very successfully but we haven't started it, I met a mum in the hospital who used this. She had a glucose breath test recently which sent her off her rocker for hours, it was as though she was drunk for several hours and sang the 7 year equivalent of pub songs all the way home at full volume which was highly amusing.

they loaded her up with glucose on an empty stomach much the same as the fructose breath test and she had to breath into a tube every 15 minutes, apparently they were testing for bacterial overgrowth. she hasn't been very well since so we shall wait and see.

If we don't get much success we may try the cornstarch, I have looked it up on the internet but no results. Maybe will try these quantities. i did start giving her a bowl of ready brek ( instant porridge) before bed which did well.

[meaniejean]

Charlie,
Wish you could have gotten the singing on video!!! I know that "drunk" behavior SO well. Calvin gets really lovey-dovey, like the kid equivalent of "I love you, man!" slurred by a drunk college guy to his buddies!
Hope all is going well. Colchicine is making a big difference for Calvin. We just need to get Sawyer on it now. And me, I think.
Sawyer is a bear every morning - I'm sure he has low blood sugar, but he refuses to eat. And milk just seems to make it worse in the AM on an empty tummy. I would try the cornstarch, but he is already on Miralax for chronic constipation so I'm afraid of making it worse. Any suggestions?
-Sandra

[ukbill]

I think this might be the effect of Glucose breaking down in the brain (I read somewhere) it produces a feeling euphoria as a result in a massive dose of endorphins being released by the brain burning the Glucose.

It is this effect that I suspect is causing some HFI'ers to get an apparent addiction to Glucose.

Unfortunately the Glucose we can buy over the counter in shops is not the same stuff as used in hospitals..

I get a much milder feeling when I have been low blood sugar for some time then eat a BIG meal with lots of Steak and rice.. OHH! the warm glow that spreads throughout my body and the feeling that all is well in the world, as my glucose level rises is fantastic..

Getting an instant KICK like that would be amazing.

[ukbill]

Back to the original message my Daughter had an "immature" liver when she was born.

As a result of this when she did not have food to digest in her gut she could not convert body fat back into blood sugar quick enough.

So she would slip into a coma and stop breathing.

Eventually I solved the problem with getting her up and giving her an extra feed at around 11pm at night so she had enough to digest to get her through the night.

I remember putting rice starch in the milk to give it a little more "body" and increase the calorific value of the milk for her.

We got to knowing by how much she drank of her late night bottle as to when the apponia monitor would start shouting and I'd have to dive over to her cot and revive her again.

Before the night time bottle it could go off 6 times a night starting from 12 midnight and getting more frequent as the night progressed.

I got Dam good at reviving her.. on reflection what ever I did obviously worked.. she's 21 now

When she was 9 or 10 months old one night she woke up herself (for the first time!) and started shouting for her supper.. It was like that for the next 5 years!

11pm and Jennifer bright wide awake! wanting food and play.. OH how I remember it well

Meanjean, I cannot think that corn starch will make constipation worse but if in doubt ask your medical practitioner.

What is "Colchicine" ?? its a new one on me.

[meaniejean]

ukbill,
Calvin has been diagnosed with Familial Mediterranean Fever. FMF is treated with a medication called colchicine, which is also used to treat gout. I find this interesting since HFI also causes uric acid issues. Kinda makes you wonder how all of these disorders might be related.
FMF is a genetic inflammatory disorder. My understanding at this point is that since fructose and sugar cause inflammation in the body, they exacerbate his FMF. Also, FMF can cause gastrointestinal issues that can cause malabsorption.
This makes more sense for him because he has never had an aversion to sugar. Still waiting to get others in our family tested.
-Sandra

[ukbill]

Sandra my thoughts and best wishes go with you. I hope you find a definitive answer soon.

I would expect HFi with badly damaged livers (as a result of fructose poisoning) to show all sorts of contradictory symptoms as the liver, and other organs loose their ability to do job right before shutting down for good.

So I would not be surprised for sick HFI people to show all sorts of secondary conditions.

[meaniejean]

That's a really great point, ukbill. Thanks! Understanding what is secondary and what is primary is really difficult. For example, I'm dealing with some movement disorder stuff right now. Is this because of inflammation, or is it because I am eating sugar and I have FDPase deficiency. Only a repeat biopsy will tell ...

[Debra]

Sandra,

I have a variant form of HFI and constipation was one of my main symptoms along with hypoglycemia and elevated liver enzymes. My constipation did not improve until I removed all vegetables from my diet. Of course I had removed sugar, fruit and sweet vegetables first. I was stunned that even non-sweet vegetables were causing constipation and elevated liver enzymes.
I don't know your son's status. But as soon as I would eat just rice, meat and dairy my constipation halts within a few hours.
Debra

[anastazya]

Debra,

I do the same thing. When I eat the right foods, I have no constipation problems. But I can't have milk, so I use Lactose free milk.

[charlie]

It is very much a matter of working out what is down to HFI and what may be other issues, they are back on the petit mal epilepsy route as a separate / linked condition on megs now as she is having very clear episodes still whilst on a majorly restricted fructose/ glucose diet but they may do EEG while loaded with glucose to see what is going on, that should be hilarious, will try and catch some on video for entertainment if she goes true to form!!!!
Maybe have to be very discreet or I'll have the social services banging on my door!!!!!

But it is always a conundrum, she reached the grand age of 8 on Saturday but had to cancel party plans as she was sent home from school having been sick the day before (just as I was about to walk into the supermarket to shop for it!!! - at least I hadn't bought the food or been at the till!!!!LOL. ) Anyway, instantly you go through - is there a bug going round, how does it manifest - oh phew for once she has what everyone else has, just 10 times worse due to aftereffects of yoyoing blood sugar!!!

[marleen]

Charlie, a bit late but congratulations with the birthday of Megan.
Is she better now?

I have tried the cornstartch drink twice on Nienke. In the hope she would sleep through a night since she is born. But both times the nights were even worse. She woke up every 1-2 hours screaming and wanting food and comfort. I haven't find out yet what it was that upset her so much, was it the cornstartch or did she had to much fructose that day? Or did she got teeth, etc., etc.

I am curious how this cornstartch drink is working out for the others her. The doctor explained cornstartch is used because it breaks down very slowly in the body.

[charlie]

Hi marleen,
yes megs better now thank you, took a few days. we had a simple birthday tea so at least she did something.

Interesting recent development. She went on a medicine called oxybutinin hydrochloride to help dry her up at night and during the day. They haven't helped the wetting but I thought at the time she started them she started sleeping better, settling earlier and sleeping through the night. before she started them she was finally getting to sleep about 10.30 at night which meant the knock on tiredness the next morning meant she was too tired for school the next day so she would arrive later and later. Within a week of starting them she would settle better, sleep through - hooray - and then be much sharper the next morning. I thought maybe it was coincidence and the family helper thought it was all the routines she had introduced!!!

No - it was the meds. We stopped them 10 days ago as they stop them every so often to see what difference they are making and she is now going to sleep at 11.15 pm and of course too tired in the morning for school. At least I know it wasn't me being a lousy useless mother!!!!!

Haven't tried the cornstarch yetas still trying other things so don't want to confuse the picture.

[marleen]

Sleeping through the nights, sounds like heaven.
I'm having sleep deprivation and when I read your story it going to be a long time until it will change.
Great it has changed for you. Does Megan go on with these meds? Because the don't work for what it supposed to be used for?

Confusing the picture. I often ask myself "Is this the HFI or is there a bug out there? Or is there something else that is going on?" At the moment Nienke has a severe cold, has 3 teeth that are breaking through and I decided to give her less breastmilk. ( We went from 10-12 feedings to 5-6 feedings in 24-hours. I'm so tired of being always availble for her. My discission had also something to do with the fact I have been ill last week.) The last 3 days she has moodswings. She walked like a drunk man more often than before. She is increasing her solid food. And by time she doesn't have any energy, normally she has energy for a whole team. But has this something to do with her bloodsugar or with something else?
If she only could talk and tell me herself what she needs and is feeling.

[meaniejean]

Charlie,
Cal is still wetting as well. Soaks straight through a pull-up and then soaks the bed as well. We have a follow-up with rheumatology tomorrow and I think I'll ask him about the wetting.
-Sandra

[charlie]

They put meg on oxybutinin hydrochloride, or there is another med called desmopressin, it depends what may be causing it, they think her bladder not emptying properly and maybe the night waking is due to bladder irritation as she sleeps so much better whilst on it. They may be brand names so not sure what in them.

Unfortunately we have had to change our latest appointment for follow up as Britain has ground to a halt due to 2 feet of snow!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!?

[meaniejean]

Ugh! I forgot to ask him about the wetting. He increased Cal's colchicine dosage to twice a day instead of once a day, so I guess I'll wait and see what kind of an effect this has. Sawyer has an appointment with the same Doc on Dec. 23, so I'll ask him them.
We should start a "I thought it was HFI but it ended up being ..." thread on here.
Glad to hear Megs is doing better!!!
-Sandra

[marleen]

Yesterday I tried the cornstartch drink for the 3th time. Previously it wasn't succes, and this time it wan't either. She woke op every two hours at the beginning of the night and later every hour. She was crawling and screaming. The next the day she haven't eat much. But she drunk the whole night milk. I can't find anything else in her diet that was strange. But from reading on the board it is unlikely to be the cornstratch. When we are back on the track and not so tired, we give it one more try.

[charlie]

Maybe she can't tolerate corn / maize products, with fructose malabsorbtion it does seem to be a problem. Meg isn't brilliant on maize, I do use cornflour in cooking but that is in small amounts, maybe the cornstarch is a different problem.

Sorry that reads as a load of waffle, just had a hyper meg bouncing off the walls for 2 hours after having homemade chips next door glycemic overload I think and my head is spinning!!!!

[emily123]

Nov 18, 2010 18:17:30 GMT -5 meaniejean said:

ukbill,
Calvin has been diagnosed with Familial Mediterranean Fever. FMF is treated with a medication called colchicine, which is also used to treat gout. I find this interesting since HFI also causes uric acid issues. Kinda makes you wonder how all of these disorders might be related.
FMF is a genetic inflammatory disorder. My understanding at this point is that since fructose and sugar cause inflammation in the body, they exacerbate his FMF. Also, FMF can cause gastrointestinal issues that can cause malabsorption.
This makes more sense for him because he has never had an aversion to sugar. Still waiting to get others in our family tested.
-Sandra

I have a heterozygous SNP for FMF too