Saturday, March 29, 2008

When is enough...enough?

When is enough...enough? This is the question I posed to Ava's neuro this past Thursday.

For the past few weeks, we've noticed the seizures slowly creeping back. For the past 4 or so days, they've been back to 30 per day. Her ketones are staying on the higher side, but not at the optimum level we would like to see. In order for us to reach a deeper ketosis, we would have to change the ratio (more fats..less carbs/protein).

Ava has had 4 major illness since the initiation of the Ketogenic Diet. She has had one major hospitalization, and a status seizure brought on by a fever...due to an illness. In our opinion, this diet has done a number on her immune system.

I put in a call to our dietitian last week, as Ava had been rejecting for a few days straight....and what food she was eating...I know, was not even close to being the ratio or calories it should. I'm not exactly sure what I wanted her to tell me. I already know all the stock answers to this problem......try new foods....don't make a big deal of it....start the bicitra again....make sure she gets plenty of fluids....check your mealtimes.....blah..blah..blah...we've been through weeks of rejection before.

What I needed was some MEGA reassurance, before I jumped ship. I explained how desperate I was for ways to help her upset we all are seeing this many seizures AGAIN....I'm pretty sure I sounded pretty desperate. The seizures are back, she's not eating, we still don't eat in front of her because she cries for our food, so we're ALL in this. Every single person in this house.

She assured me she would make a few calls to some fellow dietitians re: our case, and get back to me.

So long story short......had a major melt down while waiting for the "call back" and left a message for Ava's neuro Thursday morning crying and saying I was going to quit the diet the following day....I just couldn't do it anymore....I'm too discouraged...too tired....too heartbroken. Once again, the Epilepsy had gotten the best of me. I was down for the count.

Our pedi neurologist has been with us since day one. He met Ava when she was only 6 months old....and he's seen us through many, many, hard times, and difficult decisions. He knows my personality so well now, it actually scares me sometimes *LOL* I'm sure he had a pretty good idea of my state of mind, and knew exactly what to say. This is definitely not my first melt down over a failing treatment. We've had many.

So after an hour convo. w/ our neuro, talk of meds, talk of no meds, and lots, and lots of crying and listening to what my heart was telling me..........

I promised the doc we'd give it a full six months....GULP!

I feel good today. I've gotten all those negative feelings and doubts out of my system, and I'm ready to give this my 100%....again *LOL*.

Last but not sister Bethany gave birth to a beautiful (4 wk early!!) baby girl on Wednesday.

Ileana Rose Caro. She is such a beautiful sweet spirited baby, and we all can't get our hands off of her (especially all the germ ridden cousins!)


JSmith5780 said...

You are such a strong Mama... not sure I could ahve agreed to 6 months! I am sending positive thoughts to Ava... wishing for more eating!

What a beautiful baby girl! Congrats!


baby trevor's mommy said...

So now I know why I couldn't get you off my mind this weekend!

I'm so sorry. I'm sorry too that I didn't call you sooner...and that we didn't end up connecting. I was on the phone with my psycho SIL when you called back. :O)

But like Jen said your courage is amazing. I'm so thankful you're sharing your *guts* with other moms out there going through this heartbreaking journey.

We're to Hasbro tomorrow for a genetics consult. I have such a pit in my stomach. It's almost like I'd rather not pursue testing...but I want to know the truth. To prepare.


You're in my prayers...and I would really love to do coffee or something.

Oh and btw...Bayview can mail me the cream! They've been SO wonderful - thanks for the help on that one!


labonte4 said...

Funny enough, the past 2 days have been great. she's eating on schedule, and I only noticed 3 seizures today.

So the diet does work when she actually eats and doesn't drink a gallon of fluid per day.

I probably wouldn't have agreed to stick with the diet if I didn't see that it does work.....better than any med we've tried.

It all depends on her. She's soo rebelious!!! Her fierce personality has been her saving grace so many times, but at the same time is keeping her from becoming seizure free with this diet.

And my poor neuro *LOL*. Ah well, at least he has a good sense of humor. I seem to have attendancy to speak everything on my mind at times, and can get a little crazy when it comes to Ava.

I laugh every time I think of the message I left last week. He must have had to take a few Ativan himself before returning my call the poor thing.

Anonymous said...

It is so hard!!!! We're on the Ketogenic diet as well for my 6 year old son-we've been on it for 6 months now. His hospital stay was a nightmare, he spent 3 days throwing up and refused all his food. We finally stabilized him but I didn't think it was helping him. I cried every day!! A few months ago, we started easing him off the diet (reducing ratio every two weeks)-we didn't tell him we were doing it-we just wanted to see how it would affect him. We saw more seizure activity and reinstated the diet. At least I know it's helping him now!! And that made the difference for me.

Areina said...

Keep on Truckin'!! I love ya! Just hope Ava comes to terms that her "boo boo's" family is cool and she doesnt have to hate us... LOL!!!!!

About Ava

Ava Simone LaBonte was born December 1, 2005, a healthy baby. She was a happy, healthy, normal baby until six months old, when we noticed some odd movements, which we thought were exagerated startles. Ava had her first EEG at 6 months, and it was normal. Six weeks following the EEG, Ava began having head drops....and we knew this time, something would show up.

At 8 months old, Ava was diagnosed with Infantile Spasms, a rare form of epilepsy. She was treated immediately with a 4 week course of ACTH. Ava spent 6 weeks "seizure free". All of Ava's MRI's, CT's, and blood tests have been "normal".

On November 20, 2006, Ava had a grand mal seizure which could not be stopped, and she was put in a drug induced coma. We left the hospital on antiepileptic medication, and have been on medication ever since. Ava is currently diagnosed with Generalized Epilepsy.

So far we've tried the following medications: ACTH, Trileptal, Keppra, B-6, Depakote, Carnitor, and currently on the Ketogenic Diet.