Toynera,
Hi!

I was going through my old e-mails and realized I haven't heard from you in a
while.

How are you and Annan doing?

DJ is trying out the Low Glycemic Index diet. A mild form of seizures came
back in July. We are still trying to "tweak" this more liberal form of diet
therapy, but are very hopeful he will be seizure free again very soon.

How are your vitamins holding up?

Write back when you can. Warm regards, Thelma

toynera <toynera@...> wrote:
Well, the boy is doing really well with his development. He often
turns around to climb down and off things feet first, can stand
himself up and take a step towards furniture and has discovered the
meaning of mine when it comes to his bottle and his 2 favourite
toys. He is still being tube fed tho. There isn't anything that he
will eat, and the only thing he will drink from his bottle is water
(and his vitamins mixed in-THANKYOU AGAIN:) ). He wont even drink
milk in his bottle. Treats any food or liquid but water like poison
in his mouth. He vomits regularly even with the tube. Reducing his
Lamictal unfortunately didn't help, nor did putting him on 2/3rds
meal amount to make sure he wasn't getting too much food, didn't
seem to make a difference. Am changing neurologists and hospitals,
first appointment is early june. As well as MRI and EEG, my
Paediatrician is requesting a PH probe to test acids for refux. Will
be good to have a second opinion, and will hopefully find what his
physical issue/s with eating are and then try to deal with the
psychological ones too. If they can't work out something for his
anorexia, then we will also be talking then about putting in a PEG-
which sounds very similar to what DJ uses.
So how are you? How is Dj going? Did you have a good easter?

--- In ketokids@yahoogroups.com, Thelma Fosselman <thelma@...> wrote:
>
> Toynera,
> DJ had a mic-key tube surgicaly placed into his stomach right
before he started the ketogenic diet. The tube was placed because
he couldn't take medicine by mouth because he was having so many
seizures and would seize as soon as medication was placed in his
mouth.
>
> The tube looks just like the plug on a beach ball. The best
part about it was that it went directly into his stomach and so no
problems with gag reflex.
>
> I was able to give his medications, oil and anything else he did
not want to eat directly into the tube. No fights!
>
> DJ did develop an adversion to meat and so we switched to
monterey jack cheese. This cheese liquifies readily with a hand
blender and is high in protein and fat and very low in
carbohydrates. I would let DJ eat what he wanted of what was served
and then I would blenderize the left overs and give it through the
tube.
>
> DJ was also on Zantac for gastric reflux. He would throw up
around 2:00 a.m. every morning, this we believed was due to the
Depakote he was taking at that time. The Zantac did help though.
>
> Is there a food that Annan will eat without gagging?
>
> I'll try to think of ways the foods can be eaten by him (of
course fixed ketogenically).
>
> Hang in there, you'll get through this! Your friend, Thelma
>
> toynera <toynera@...> wrote:
> 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
>
>
>
>
>
>
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>






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