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Friday, July 03, 2009

Awakenings and Weaning Off Depakote

This post is about weaning Ellie off Depakote and has a metaphysical edge to it. So for those of you who are not philosophy fans this post is not for you. Just skip it. I however have my Bachelors degree in philosophy and ever since getting that education can't see the world without it - so bear with me.

I am weaning Ellie off Depakote against doctor's orders.

There it is.

The question that is torturing me is why didn't I do that as soon as it started making her sick? In 2007 when she was four and a half in April she started to have seizures. Small ones. I took her to her Neurologist who put her on Depakote and told me that someone with Ellie's history, I believe the technical term she used was "these kids", if they are gonna develop seizures do so between the ages of 3 and 5. And there Ellie was at age 4 and having these small absent seizures. She did throw up if she was eating and then she would sleep for 40 minutes. You can read about that here.

Within two weeks of medicating her, on Depakote liquid, she refused all food. This was a huge blow. We had worked with her for thousands of hours to get her to eat. No small task with someone with the level of dysphasia that she had out of the gates. And I mean we worked with her right in the NICU. At the point of the seizures she was eating ALL her purees (4 different meals) per day and that was about a cup and a half of pureed food in 15 to 20 minutes with us feeding her. This was a HUGE accomplishment on all our parts and was 4 solid years with over 8 hours a day, 365 days per year, which calculates to roughly 3,000 hours per year for over four years which is about 12,000 hour plus of working with her to get there. That's a lot of effort, heart and soul going into getting her to eat by mouth. Can you feel my pain when it was all swept away in a two week period?!!!

For her to just refuse food was a hideous thing. It had such a huge effect on me that I lost my objectivity and a little of my logical reasoning skills and my energy was deflated. I asked her neurologist about it of course and was told, no Depakote does not affect appetite other than to increase it. (so I must be crazy right?). No you should not try another drug, because Depakote has the least side effects. 

I kept trying to get Ellie to eat for months. And was told, now she has a sensory aversion to food. She is trying to control her environment. It's become behavioral...

Ugh. And all this time I wasn't listening to my inner voice. Actually that is not true, my inner voice was going crazy, shouting "This is wrong! All these explanations are WRONG! Get her off that crap!!"

Now, in 2009, 2+ years later I was told that the Cisipride she WAS on causes seizures. She has been off that since January roughly - see here.   I have recently met a couple of adults who are on Depakote who do report that it makes them dizzy, tired, and nauseous.  Hmmmmm dizzy and nauseous and tired?  Go figure - if I felt all those things at once I wouldn't be eating either.

This realization hit me very hard this week. What the f*&% was I thinking leaving Ellie on the Depakote this long? I should have fought harder with the doctors to get her on a different drug. The Cisipride study showing the link to seizure activity was only made known to my by my Doctor in December of 2008. And back in 2003 when we put her on it Ellie's reflux was really horrible, so not sure I would have taken her off it had I known. Because she used to vomit 30 times or more a day.  But I should have used my logical reasoning better and worked harder to preserve her eating. 

I feel like I lost my mind a little over this one. I feel that if Ellie had NOT had a G-tube all the doctors and everyone else would have been supportive of figuring out a better med for Ellie. I would not have been alone asking these questions, knowing something was very wrong but not sure what.

Now it seems so obvious. Now her eating issues MAY be behavioral.   

She is on half of the Depakote dose she was and she has grown. I am sure that her level is way below therapeutic. I am weaning her very slowly to let her system adjust. She is less tired. She is enthusiastic at the table now and want to touch the food and feed us and she will sometimes actually taste it. She thinks meal time is fun and funny. That is progress and maybe she is feeling less nauseous.  

Regrets are unproductive. There is no question of that. When I work on teams if something goes wrong my approach is always, ok, let's fix it and then figure out what happened so it doesn't happen again. There is no blame. But in the Mama role, I do feel like I let her down and that is a heavy burden. The me of today is like, What were you thinking? to the me of 2007, who was a very different person (that is the metaphysical part, in case you were waiting around for it). 
I know I am on the right path now with Ellie and the Depakote and that it was right to take her off the Cisipride. Her scope 6 months ago was proof of a very healthy esophagus and digestive track which the Cisipride, Slippery Elm, Zantac and Protonix and food combining diet were responsible for.   But man I wish I had figured all that out before now. Eating is one of the things that gives us something in common with everyone else.  Chewing food in the mouth is so important to digestion because there are enzymes in the mouth that are not in the stomach. It's healthy to eat by mouth. 

I am hoping that once she is fully off the Depakote she won't feel so tired or dizzy or nauseous. I look at pictures of her when she was three and see this bright eyed girl with eyes aligned. Then pictures of her after show a blurry eyed Ellie. I want my bright eyed girl back. And for the record I am really sorry that I put her on a med that made her feel so exhausted and sick.  


Anonymous said...

The decisions are such complex ones, typically with no one right answer. You can only do your best, and that you have most certainly done. You are such an amazing advocate for your daughter.

Anonymous said...

Philosophically, I am in agreement with you.


Cheryl said...

I have a friend who is 50, has epilepsy, TBI, paraplegic, minor depression. So he doesn't have all the spastisity issues that go along w/CP. The only thing that worked for him for his seziures is a combination of depakote and lamictal both in low doses for an adult. His wife said the depakote makes the lamictal more "lamictaley" and the lamictal makes the depakote more "depakotey." I know that he has pretty bad tremors and that is due specifically to the meds mixing and I don't think he would have them otherwise. He also gets double vision and closes the door to his office so he can take naps during the work day. That's the only way he can get the double vision/overwhelming fatigue to go away. It could be from the TBI, not totally sure, but 90% sure it's the meds. He puts up with it b/c it is the ONLY thing that works for him.

Push for Ellie to work on her AAC. Then when she is a teen she can become all oppinionated and argue with Drs and demand that she gets what she wants. It's worked for me, not every time, but a fair amount over the years.

Penny L. Richards said...

For a long time (years), Jake was on a dose of his seizure med that "shouldn't" have worked, it was so small. But it did. (And when he missed a dose, we noticed the difference.) The neuro didn't like it, but he couldn't really argue about it, and couldn't give a good reason for increasing the dose or changing meds. So, if a very low dose works, despite the charts and graphs, maybe that's all she needs.

Trust your instincts on this. You know how there are seizure dogs who can sniff out the chemical changes that precede a seizure? I suspect a mom or dad can have a little of that sensitivity. You know the difference in your kid, even if you can't say why exactly.

Catherine said...

I am thinking about you and Ellie. I certainly hope you have success in weaning her from the meds. It is a tough situation when multiple issues are involved. Treating one thing often exasperates another. Even if this process does not work out, you will know whether this med is truly necessary or not.

Friends of ours have a child with seizures that are intractable without heavy meds, many that are harmful to her. It's been quite a balancing act for them. One thing that they tried that did not work but did work for a number of other children they know is the Johns Hopkins diet. It is a horrible diet (nearly all fat) but has worked for some children.

Again my prayers and wishes are with you.

Mamá Terapeuta said...

Kathryne, I'm with you.

Depakote destroyed my daughter's health, and didn't stop seizures. Doctors just keep on adding meds, and her body kept gettint worst...

So I took her off the meds and started a diet. We are very happy with the results. She is laughing again, she is her self again.

Every child is different. I believe that is this drugs were making Elli sleepy and absent, then they are not helping her.

Wish you the best, you are not alone in this :)

lesley said...

"I did the best I could with what I knew at the time". This is what I tell myself when something like this happens. Forgive yourself. These kiddos are very forgiving and patient with us 'dummy mummys' :) I am betting she will spring back to her original sparkle. And the 'lesson' in all this? Dig deep and move that inner voice to a place of honor. Check in with it frequently. It's all we have got.

PS-I had a chuckle when I read about the mouth enzymes. My Sarah cannot chew but does eat by mouth, so I chew FOR her and then feed it to her. Gross, I know, but now I know why my 'inner voice' is directing me to do so!!! Thankyou.

Katy said...

I say, "why the hell not?" Your child, your discretion. There are a lot of parents on the ABR boards who've quit the medicines and are happy with the results. I think you have to weigh the positives and the negatives and find out what works for your family. Good for you!

terrible Palsy said...

Kathryn, I really feel for you as it is a tough gig. It's hard to go against the doctors. I believe in your instinct.
As for what Lesley has to say, this is how the indigenous aussies feed their babies. My best friend growing up was aboriginal. Ad (my eldest who is now 17 but was only a year or so old at the time) and I spent Christmas dinner with her and her family one year. And this is how they fed Ad. Grossed me out at the time but accepted that it was a cultural thing.

Thinking of you.

Kathryn said...

Thanks everyone for the support and insights. I don't think I will be chewing Ellie's food for her yet. One step at a time! So far so good regarding the weaning. It's almost done and she is brighter!

Mamá Terapeuta said...

Wow! You did it really fast!!! It took us about 10 months to wean her of 10ml of depakote. We are 1ml to go!!!!! And then we'll start with Kepra (does anyone know how weane off kepra??).

I'm glad Ellie is doing great!!! (BTW, I'm one of that ABR mamas... Is true, a lot of ABR mothers stop the epi meds, must be something about gettin used to goi against doctor's advices :D)

abby said...

We always do the best we can at the time, and we always regret it when it turns out we weren't doing the right thing, we weren't doing enough, we couldn't handle more than we were already doing. Right now, I'm kicking myself that I did not fight tooth and nail for an orthopedics referral and for PT for Hallie with all of the so-called experts who said she did not need one. Turns out she needs these things badly and that we're probably cruising for a CP diagnosis (on top of everything else) and bracing any week now. Would fighting have changed the outcome or improved her mobility? Who knows? But I am still kicking myself... So I am right there with you on the metaphysical question.

And I hear you on the eating. Hallie has a very traumatic relationship with food. Like Ellie, she used to vomit between five and twenty times a day, every day. Turned her off of food. Nearly turned me off of food. Once the vomiting was under control (which started about a year ago, and is getting more under control this year, even), the residual hatred of food is still there and so is the behavioral food refusal. She can chew and she's not allergic to nearly as much as she was and the reflux is better, but still it's a chore to feed her and for all the progress we make, we seem to backslide just as much. I've kind of learned to accept, most of the time, that we'll never solve this thing.