See Christian and Lola's ISR video!

Sunday, June 27, 2010

They're back...

They're back. Boo.

They gradually started appearing, unwelcomed. At first, I was unsure. But now I'm sure.

His jerks, that is. His seizures. Actually, I'm not really sure that each and every jerk is a seizure but, for the most part, I can conclude that the once revered Vigabatrin, has failed.

They started making their appearance sporadically before we went to NAPA. I figured it was his body regulating to the medicine. At the onset of the medicine, there were no jerks or spasms. But Christian was completely drugged. There was no tone, no purpose, Christian just checked out.

As the weeks passed, Christian slowly came out of his druggy fog and started doing some things he'd never done before. He started getting his upper half from one side to another, actually purposely reaching for toys. It was then that I realized that seizure control is not something to be flippant about. It is completely necessary for Christian to progress. You don't know something is wrong until it's not wrong anymore.

As Christian came "back" a little more each day, so did the jerks. So did the vomiting. So did the tone. It wasn't ALL bad. I mean, he was finally present again during OT. Prior to going on Vigabatrin we were gaining some headway with tastes and making our first steps in maybe trying foods by mouth. But that came to a halt when we started the new medication because his swallow suddenly became very relaxed.

When the jerks came back, Christian's OT confirmed that she saw it but that he was also more present. That is true. His swallowing is a lot better and stronger now that the Vigabatrin has kind of "worn off."

The jerks got more frequent during our week at NAPA and then when he got his temperature after we got back, I saw activity I'd never seen him do before.

I didn't know what to expect with Vigabatrin so when it seemed to work I was excited. At this point, I just want to move on to the next option...quickly. Other moms who have children with seizures understand that every time you see your child exhibit the slightest bit of seizure activity it's like your puppy dies over and over again, especially after you've had seizure control. I don't know where I got that from, I think it's in a movie, but I can't think of a better way to put it.

Christian is maxed out of Vigabatrin for his weight so this is the end of the road for the big V. The next step is trying the Ketogenic diet. I'm hopeful for this option because it's not a medication! It is a hard diet for those who are fed by mouth but since Christian is fed by g-tube it isn't all that hard because I control everything that goes in. However, it's not a diet you just up and decide to do. It requires hospitalization and very careful monitoring. It is no small feat.

I truly believe that the seizures have stolen some of the progress and development for which Christian is entitled. I also believe that seizures are the villain that has stolen his smile and not allowed it to return.

For that reason alone, I'm willing to do WHATEVER it takes to banish those jerks from Christian's life and run them right out of town.


WhitneyBooze said...

oh Shauna,
I'm so sorry.
I'm sure you are feeling helpless, and sad.
I will pray for seizure control.
FYI - i have 3 friends here in our support group that all love the ketogenic diet, and say it has been a true miracle for their kiddos.

Hugs, and love coming your way - Whitney

HeatherS said...

Shauna I am so very sorry. I hate it when it works for a while and then you slowly see things start to slip back.....such a let down.

Samantha was on the keto diet for three years and it worked great. I even made her own formula. Let me know if you want to talk further.


Alicia said...

Why is there always a trade-off? So not fair! Either he is doped up or he has seizures. Or the med only works for a short amount of time!

I'm praying the new diet will be the answer. Christian deserves it. You deserve it also.


Colton's Journey said...

i have a friend that does the k-diet for her daughter. She swears by it. Let me know if your interested and i'll give you the info! Keep at it. Your doing amazing things with C!! I know your frustrated, but BIG hug for all the hard work!!!!

Jen said...

K Diet has helped us a fair amount.

Toddlers on anti-seizure medications is a tricky game. They are constantly growing and changing, and dosages need to be changed and altered to the ever changing toddler.

We live by if they look like they are starting again we see the doctors asap.

Post a Comment

Popular Posts