i’ve wanted to blog about this for a while
but it’s obvious that the time is now.

 

so back at the beginning of the year,
i met with a team to discuss doing something rather drastic…
putting L on a specialized diet
that would potentially stop his seizures.
he’s had so many breakthroughs over the past 15 months,
so it’s clear that the three medications he’s on
are not totally working.

 

the diet is called the ketogenic diet
and some kids respond really well to it
and can be seizure free for the rest of their lives
by only being on it for a few years.
others don’t respond to it at all
and others respond to it but only remain seizure free
while on the diet.

 

to initiate the diet,
L will need to be hospitalized for 4-5 days
for close observation
and i have been given
a long, scary list
of side effects
that can happen when beginning the diet.

 

i decided that having a new baby
and starting this diet
were going to be just too much to handle,
so we tentatively put off starting the diet
until sometime later.
but i was secretly hoping that we wouldn’t have to do it at all
because the entire thing is completely overwhelming to me.

 

L hadn’t had a seizure in 23 days.
i thought he may have been healed
or the medications were finally working
(one of his meds has recently been switched
to a brand-name medication).
and i was secretly rejoicing
because i thought maybe,
just maybe we wouldn’t even need to try the diet.


the diet is 90% fat
with just enough protein to keep him growing.
every single thing he will eat throughout the day
will have to be approved by the dietician
and the ratios of every recipe
will be calculated specifically for L.
we’ll use a gram scale to precisely measure all of the ingredients.
and no cheating will be allowed
as it will throw off the entire thing.

so that means no special treats at school
or for birthdays,
no eating out
and i’ll need to bring his meals with me
if we eat at someone else’s house.
and if he doesn’t complete a meal,
i will need to calculate how much of the meal was unfinished
and give him that percentage of a prescription ensure-type drink.
all within a limited time-period.


prior to the hospitalization,
i need to get his water intake increased by 100 percent
and he needs to cut out drinking milk entirely.

 

some crazy parts of the diet include
baking in silicon trays
as paper cups absorb too much fat,
only putting certain lotions on him
because did you know this,
there are carbs in some lotions?!
and, never giving him liquid tylenol or motrin
as they both contain sugar.

 

this diet wouldn’t be a small change,
in fact, it would completely transform mealtimes
for everyone in our house.

 

but then last night, he had a seizure.
but this one was stronger and longer
than what his seizures have typically been.

there was this brief moment where i thought that maybe
we’d need to use his emergency medication to stop the seizure
(in 3.5 years since being diagnosed with epilepsy,
we have yet to have had to use it).
or i thought that maybe we’d have to take him to the hospital
to have them stop it.
but then the seizure started to slow.
it hung on for a little while after the shaking stopped,
but then the relief came when it was clear
that he was finally out of its power.

 

and right then, in that moment,
i knew that we needed to try the diet.
just to see if maybe L wouldn’t have to be
a prisoner to anti-convulsant medications
for the rest of his life.

 

so, we’re going to try it this summer,
so that we can get it established before the school year begins.
it’s a three month commitment
and so we will commit.

 

And my God will supply every need of yours
according to his riches in glory in Christ Jesus.
Philippians 4:19

 

3651. middle of the night clarity
3652. being able to read while nursing
3653. the way L kisses F on the cheek
3654. the greenest leaves
3655. the way she holds onto my arm when i burp her

close
 

Comments are closed.

Archives