[tri-med] Re: Rebecca crying

----- Original Message -----
From: "Glenn Hardy"
> Rebecca is fed regularly, ( g-tube) and her crying is on awakening the
pead
> could not find anything wrong, guess I need to take her back...........

Alex was g-tube fed as well - which was why it was harder to pick up the
hypoglycemia. The first indicators that something was wrong was when we cut
one of his night time boluses. He would wake up tearful, agitated and angry.
He also had frequent seizure like episodes. After I fed him he would be
himself again. It took a long time to convince the doctors that there was
something wrong and that he was not just an obnoxious child.

Of course you know the story of when he was tested - it was done to humour
me because he couldnt possibly be hypoglycemic according to the doctors
because I had never found him comatose. Within 4 hours of a meal during the
testing he was symptomatic low (agitated, tearful etc), and within 7 he was
comatose and having a grand mal seizure. The reason that he had never been
comatose was because he was fed so regularly (every three to four hours even
during the night). When we pulled that night feed his symptoms became
obvious in the morning.

Even putting him on continuous overnight feeds didn't really stop the hypo
episodes because we were giving him plain formula which has a very low GI
index. To solve the problem he had to go on formula with added complex
carbs. Later I switched to pureed foods mainly because of this. (dumping was
also a factor though)

A growth spurt or even simply increasing her tegretol may alter her blood
sugar metabolism enough to make her mildly hypoglycemic on waking - in fact
I just checked my MIMS and tegretol is a glycemic drug, it lowers the
available blood sugar. Can you borrow a glucometer from work and check her
BSL next time she has one of these crying episodes? Just to humour this
neurotic person??? Please......... I still get chills thinking about what
would have happened if we hadn't found Alex's hypoglycemia. Its so so simple
and so easily overlooked, particularly in older kids, and Alex's endo admits
that hypoglycemia may well cause brain injury in our kids even though they
are older and at an age when its usually considered safe.

A rich child often sits in a poor mother's lap.
  -- Danish Proverb

Keep Looking for Rainbows!!!
Karen, Mum to Alex (8, T-18 mosaic)
Sydney, Australia
http://members.optushome.com.au/karens
http://www.trisomyonline.org

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

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