| Nov. 5, 2009 |
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oh my - Cody just had a 4 minute seizure that required diastat
(or it would have been much longer.)
We had gone 10 days without one that big - man this is so hard.
I met with his gastro dr. tuesday to discuss the backward gift of
the swine flu - 5 seizure free days. I
expected him to write me off, but thankfully, he was very respectful,
curious, and committed to following my theory through.
So here's what I told him: In the hospital, on an empty tummy
(IV fluids only) - Cody began 5 days of seizure freedom.
As we gradually reintroduced him to eating his
formula (via g-tube), his seizures came back. when he was
up to full feeds, the seizures were crazy. We did 2 days of
pedialyte only - to see if eating again was the culprit.
On pedialyte, we saw just 1 or 2 tiny seizures for 2 days.
As we brought the formula back in, seizures went nuts again...
culminating in today which is his first day of 100%
full feeds....and a 4 minute seizure that needed diastat.
I told the dr. that this has happened once before - when
cody was 1.5 years old he had a bad flu and threw up for a
few days. Same thing - on an empty tummy he was seizure free.
The Dr. said the data was hard to ignore. We discussed
that either something in the formula could be triggering
seizures, or simply the energy required to digest took too much
energy away from the brain (creating seizures.) So our
game plan is to 1) change formula to Vivonex TEN which is
a super low fat formula. Neocate one plus (his current formula)
has tons of oils and fats which could be just too hard on his stomach.
Fats are not easy to digest, and perhaps making the formula as low
fat as possible will be less energy-taxing on his tummy. If that
doesn't work, 2) try that formula on a continuous feed - meaning
rather than 4 feeds a day (of 8 oz each), Cody would wear a backpack
(fun! Not!) all day and food would drip into his tummy very slowly
over the course of the day. This would even out the energy used
to digest, would provide perfectly even glycemic index
levels, etc. This option makes me cringe as he is constant
movement and adding a backpack with a pump in it scares me to
death. Typically kids with continuous feeds are less mobile,
often in wheelchairs. If that doesn't work, 3) put him on Pedialyte
only for 2 days to give his tummy a break. Then add in 1 food a
week - measuring seizure reaction. When we come up with a list of
'safe' foods, create a formula out of them. If that doesn't work, 4)
try IV feeding. That would involve putting in a temporary IV site and
feeding him directly into his bloodstream. This is an extreme measure
and risky given the infection rate with IV-only feeding. This is usually
only reserved for people who have to have parts of stomachs or colons
removed, or who have such severe conditions they cannot process food
in any way. This would be a last resort for us.
I left the meeting feeling very validated which is rare in this world for
me. We love our gastro Dr. He even asked me what my 'moms' had to
say about this...he meant the moms in all the online forums I belong to
(mito moms, infantile spasms moms, G-tube moms, etc.) For a Dr. to give
credit to that system (the community of moms helping moms) felt
very good. He admits he's never run into this before - and all we can
do is move through a process of elimination. But he said he was
committed to 'going to the end' with me in trying to get Cody back
o more blissful seizure free days.
I have contended for almost 5 years that Cody's seizures are driven
by his gastro issues. Finally - I have a partner in this Dr. who is willing
to truly pursue this truth.
After this 4 minute seizure today, I couldn't be more ready. Of course
it takes lots of time for the wheels to turn - we have to get a new
prescription for the new formula. It has to be processed, the formula
has to be delivered, which won't happen till probably the end of next week.
Then we trial the Vivonex ten for 5 days. If it's not working, on to plan 2.
Please, if you feel led, partner with us as we pursue these new options.
For me, it will require even more dilligence, creativity, patience, and
data-taking. I felt maxed out before - but I am praying for the mojo
to attack this head-on. Mostly, if you would, pray for Cody's seizures.
Mito disease is progressive - that is true. But it's the seizures that kills us.
If we could even reduce them, our quality of life would shoot through the roof.
Thank you so very much.
On a lighter note, Casey is loving his new 'ride' - I mean bed. Although
he fell out one night which was a little scary for him! He has been
waking up a couple of times a night recently which is new for him.
He was loving his own room, and sleeping fantastic. But lately he wants
the door left open, the light left on, and twice a night he yells for me to
ome in and see him. That, partnered with Cody being up for hours in the
night, makes for a grumpy mommy!
That's it for now. We soldier on....and are grateful for those who stand
shoulder to shoulder with us. God is good...and He is in control. So we
continue to count on Him for peace
and endurance as we battle on for Cody's health.
with love,
Shawna
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