[tri-med] Re: Low blood sugar

----- Original Message ----- 
From: <Bdancho
> My question is related to low blood sugar. The Docs are recommending that 
> we
> stop giving him added sugar because it is probably a function of his liver 
> and
> they think it will eventually fail.

My son Alex (T-18 mosaic) has hypoglycemia (low blood sugar) and has had 
since birth. In Alex's case the cause is ideopathic (that means that they 
don't really know why it has happened) but like your doctor they suspect 
that it is a problem caused by his liver, specifically the failure of the 
liver to produce a specific enzyme that converts stored glycogen to 
available blood glucose.

Alex will be 12 in a few weeks so it certainly hasn't been the "end of the 
road" for him - its just one of many problems that we deal with and its a 
pretty small one on the scale of all his problems.

When Alex was very little we bolstered his food with sugar - (polyjoule - 
actually a non-sweet tatsing sugar additive, and I can't thing of the US 
equivalent off hand - someone refresh my memory please is it polycose?).

As he got older we got better control by adding raw cornstarch to his 
formula. And I am serious - cornstarch, not cooked just spoonfuls of 
cornstarch. Raw cornstarch slows down the bodies absorption of the sugar in 
the formula. The big problem is that cornstarch clogs feeding tubes and you 
constantly have to shake the bottle because the cornstarch "settles' out of 
the formula very quickly.

The big thing to remember is that hypoglycemia gets better as they get 
older. As a baby Alex needed continuous feeds to keep his sugars up, his 
fast time (the time between the last feed and the onset of hypoglycemia was 
2 hours) By the age of 2 he could go 5 hours. By the age of 8 he could go 11 
hours. Alex will always be hypoglycemic but providing he eats small amounts 
regularly then he doesn't show symptoms. If he stops eating then he is in 
trouble (another reason that we have left the g-tube in even though he now 
eats orally)

Low blood sugar usually makes them not hungry so it's a vicious circle.
Once they start eating real food, and you can add more complex starches (low 
glycemic index foods) which slow down the absorption of the sugar into the 
blood stream you will see a big improvement. I didn't know that Alex was 
hypoglycemic as a tiny baby (hospital stuff up) - I just followed my gut 
instinct and started him on solids at 2 months of age (bananas and rice 
cereal) - It made a huge difference.

Alex's calorie requirements as a baby were humungous!!! I was always getting 
into trouble for over-feeding him. BUT his weight and height were always in 
proportion AND he was never obese. So to my rationale he needed it, so I 
gave it to him. Compared to other babies the same age he had about double 
the calories that they did.

For us the first steps in determining the issue was to admit Alex to 
hospital under an endocrinologist. The endo then did a controlled fast.
They drew blood to check his sugar levels and to also check other blood 
chemicals such as insulin.
I fed him and then he went without anything. The nursing staff did a finger 
prick every 15 / 30 minutes and also drew more blood. His urine was also 
collected.
What they were looking for was
a) his sugar levels
b) the level of insulin (some hypoglycemia can be caused by the over 
production of insulin - not so in Alex's case)
c) that when his blood sugars got too low if he started converting stored 
glucose, fat or protein to blood sugar indicated by things like ketones in 
the urine (a sign that they are converting fat to blood sugar)

We use different measurements for blood sugar and I am sorry I have never 
worked out the conversion. But for a child (NOT a baby) here you normally 
try and keep the sugar level at 4 or above, preferably about 5 or 6. Tracey 
can probably give you the BSL ranges for babies - I wasn't as involved when 
he was a teeny baby and all I know is that they tried to keep his BSL above 
2 but at 2 now and he would be in a coma!!!! His lowest as a neonate was 
1.2.

When Alex was formally tested he dropped from 7 to 2.6 in 5 hours and at 2.6 
he was fitting and lost consciousness. After his discharge we started using 
a glucometer to monitor his sugar levels and actively treated his 
hypoglycemia by making sure he ate every 3 hours so that his sugar never had 
a chance to drop. Overnight he was placed on continuous feeds with a bag 
refill every 4 hours just to make sure that it didnt disconnect in his sleep 
and allow his sugars to drop wirthout me knowing.

Essentially Alex is treated as a diabetic as far as diet is concerned - he 
just gets hypo's instead of hyper's. Would it help your doctors to see a 
copy of Alex's hypoglycemic fast results and a picture of the bright and 
happy 12 year old now? It might help convince them that it doesn't have to 
be the end of the road.......... As I said he is still hypoglycemic but 
controlled. The only time we have problems these days is if he stops eating 
for some reason and then I slow drip through his g-tube or else he gets an 
IV with between 5 - 10% dextrose.

He hasnt slipped into a coma because of the low sugars since he was 3 and 
once they get to the age of 5, even if they do get hypo its unlikely to 
cause brain damage.

Hypoglycemia is NOT a common problem amongst triers, but its also not 
unheard of either. I have met 3 or 4 hypoglycemic triers over the years but 
I suspect that there are probably more out there that havent been diagnosed.

Life consists not in holding good cards but in playing those you hold well.
                                            -- Josh Billings

Keep Looking For Rainbows!!
   _--_|\
 /Karen \
 \ _.--._ /
          v Karen, Mum to Alex (11 years, T-18 Mosaic)
http://members.optushome.com.au/karens

                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

Other related posts: