Well, Annan has been on the diet for 7 months now! Can't believe its
that long already! Annan has always had feeding problems, from not
being able to breast feed, to gagging and vomitting regularly on his
formular bottles, to not ever increasing his texture past mashed, to
trying every trick in the book not to have to eat food or swallow
his medicine, and now to total refusal to eat, and any small amount
I can get in his mouth he gaggs and vomits on. I know he has a lot
of aversions to food due to an overactive gag reflex, vomitting from
food so often, having to take so many, so often and so revolting
medications with or without food and having to eat all his food at
specific times etc, but this has become so extreme! He has been
using a naso gastric tube for a month now and even if I offer him a
small amount of melted sugar free chocolate he cries when he sees
the spoon and soon gaggs and vomits. He is currently taking
phenobarb-75mg/day and in january started on Lamictal. Although
Annan's overall brain activity is less all over the place and has
therefore been able to almost literally take leaps and bounds in his
development, He still has seizures. He currently (although they have
changed from classic 1 second tonic infanile spasms, to longer
tonic, a few tonic clonic, up to 50 myoclonic seizures/day) now has
startle reflex and touch evoked seizures. * could his over
sensitivity or whatever it is that causes him to have a seizure from
being even lightly touched,or even immediately before being touched
be causing his response to food?
Is it psychological or physiological?
Lamictal is a very slow increase dug and his gradual rejection of
food does seem to correllate with the increases of Lamictal.
Lamictal can have side effects of nausea and vomitting. But this
doesn't explain why he would refuse food and drink only formula for
up to 2 weeks sometimes before he was on the diet or on Lamictal, or
his bouts of vomitting. We have reduced the Lamictal to a small dose
and there hasn't been an improvement as yet.
We also increased his calories. Is he having too much and feeling
too full etc? But even If he doesn't eat for 12 hours he doesn't eat
any better.
I've had meetings with my paediatrician, dieticians, speech
pathologist, occupational therapist, early intervention etc, but
they can only offer suggestions that I cant do on the diet, like let
him play with his food(!) or things I've already tried. It was even
suggested that he go off the diet. There was a long pause whilst I
settled myself before replying that the diet is the only reason my
nearly 2year old son isn't still only rolling on the floor and has
now Taken his first step (HURRAH!) is because of the diet and that I
would rather that he was tube fed for the next 2 years than go off
the diet. (note:he has now tried 5 different drugs which have
apparrently had no positive effect)
I'm at a loss! My little easy gag boy now has a tube down his
throat, which I'm sure isn't helping his gagging sensitivity and we
regularly have to replace the tube and or bandages as he often pulls
it out, which makes him scream and cry hysterically.
Any suggestions? Or any opinions? Anyone with experience with tubes
that can make life easier?
Thanx, ToyNera and Annan