Friday, January 11, 2013

Closing A Door? Opening A Window?

Ever since Tommy first started having seizures, I've been pretty open with most of it. I've spoken about his tests, our fears, and all that we've gone through. When people have emailed me, I've answered their questions. I've even shared who our doctor is when local people have reached out to me. One thing that I've held close to my chest is how we've treated him. And I suppose that's cowardly of me to not fully disclose everything, but I have and have always had my reasons. If people email me and ask (and they have), I share but I decided a long time ago that I didn't and wouldn't share on my blog (or really outside of my blog, either--this one has been held close to my chest) for a lot of reasons.

But then I decided that I need to share, as his journey--our journey--with epilepsy continues to unfold. I also need to explain why I chose not share because that's important, too. When we first left the hospital so, so many months (goodness, years?) ago with Tommy's initial diagnosis of epilepsy, we also left with a prescription for anti-seizure medication. But you might remember that we had serious issues with the on-call neurologist at our local hospital (oh, my heart at tiny 15 month-old Tommy in that blog post), so there was no way, no chance we were taking her advice and putting him on medication. I tore the prescription up and threw it away. The next morning we went to University of Chicago and the neurologist discussed several options with us, one of which was medication. Yes, she was aware of the ketogenic diet and several of her patients were on it, but Tommy didn't fit much of the criteria for it. Yes, chiropractic adjustments were certainly a good compliment, but probably not going to be a cure. Yes, she understood that I had reservations about putting my 15 month old who had never even been on antibiotics on anti-seizure medication, but she also stressed that he was a child who had three seizures in one week and we needed to be concerned. She was also willing to wait and see, so we left it at that. Then he continued to have seizures and seizure activity, so we had to be realistic. We had to make a choice and we chose to medicate our child.

Here's why I didn't share: when Tommy had his first seizure, the ambulance was just barely out of the driveway when Shane stepped outside with Luke. He went outside with Luke for two reasons. One, to calm Luke down. Two, because there was a crowd of neighbors outside wondering what happened. After explaining what happened, one neighbor said, "Oh, a seizure? Do you vaccinate?" Keep in mind that we just thought our child was going to die and already, someone was passing judgment on why she thought it happened, already giving an armchair diagnosis, when what she should've said was, "How scary, I hope everything is okay."--and honestly, I'm used to that kind of judgment on the internet, but at the end of my DRIVEWAY? To this day, it still bothers me, deeply (and for the record, judgy neighbor lady, vaccines have nothing to do with his epilepsy). Shane brushed it off, but I'm glad that he's the one who handled that comment, because I don't know how I would've reacted. And so, my heart has been too fragile to hear that you (the broad general sweeping blog reading world, hi) would or would not have chosen to medicate your child. Maybe you would. Maybe you wouldn't. I don't know if I would choose to put another child on seizure medication, because I would have to base it on that child. All I know is that this is what we chose to do with Tommy. Two years later, I am certain that we made the right choice. Seizure medicine DOES NOT work for all children. Or all adults. But it worked for Tommy. Tommy went from having several seizures a week to one a month. Then to one every three a month. Then to, by the grace of God, none in OVER A YEAR. There are truly no words that I can use to describe how this feels, this grace to have the kid who gets better.

Still, there's something unsettling in that he's been on seizure medication for longer than he's not been on it. Twice a day since he was 15 months old. It's part of our routine. It tastes like cherries, so he loves it, but it isn't easy to give your child a medication that on the side of the bottle says: "Call the doctor if you experience any unexplained sadness." Also not easy: uncontrolled seizures. Our neurologist has known from the moment that we started him on medication that our eventual goal was to wean him off of it. When we made that difficult decision the first thing I said was, "How long will he need to be on it?" When we made that year mark, we sat through his appointment with held breath, then she smiled at us and said, "We can talk about weaning him off now."

So, here we are. We could've done it in October, but our neurologist was nervous about doing it around the holidays in case we couldn't get ahold of her due to traveling. I was nervous about doing it while he was off schedule with sleep, so we all made the decision to wait, because what was a few more months in the grand scheme of things? This is what it comes down to... this is when we find out if our child has outgrown epilepsy or if he's just really compatible with the medication. When we saw her today, she said that she worries about pushing him into another seizure, but more than that, she doesn't like having a kid on medication when he possibly doesn't need to be. I don't know if this makes sense to anyone, because I've just outlined all the reasons why we medicated him and why I was fine with that, only to turn around and say that we're taking him off the medication. Because I have to know if he can be unmedicated and if he's outgrown it. If he has another seizure, we'll put him back on the medication and simply be thankful that it works so well for him.
It's scary knowing that we could be opening him up to another seizure, after so long without... but somehow, it's scarier not knowing.

21 comments:

keli [at] kidnapped by suburbia said...

I love you and Tommy. You made the RIGHT and BEST decision for your son, and if anyone faults you for that, well, that's their problem. I'm so so happy for the weaning process, and I am so hoping that this is IT. Wow. Man, that would be amazing.

Allyson said...

These are the types of things they don't put in the baby books. No one can make such delicate decisions for you. I hope that he can come off the medication with flying colors. No parents should have to have such worry on their hearts. (((hugs)))

Crooked Eyebrow said...

window open with nice breeze and sunlight...

Hoping right along with you. Lots of love and prayers for you and Tommy.

Bari said...

Prayers he comes off the meds with flying colors and he's outgrown it.

((hugs))

karin leigh said...

Hoping that this closes the door on this journey but so grateful they work in case it doesn't. Thoughts and prayers for your hearts and Tommy's brain. YOU are an amazing mom - don't ever question that.

Anonymous said...

Screw judgy people. You are handling this with love and caution and consideration. That's all anyone can ask for. Hoping for the best outcome.

Kim said...

Oh love, I understand your reasons for holding this so close to your heart. I have the same reasons for not talking about how Emma died.
I have a good friend whose son has epilepsy. He has been on seizure medication for a few years and is doing brilliantly.
Here is the thing that judgy-mcjudgypants forget - he is YOUR child. YOU have the right to inspiration from God as to what is best for him. You are the one who lives with him, loves him, prays for him, watches him like a hawk, and would die for him. You are the one who can make that decision and shouldn't be worried what anyone thinks.
BUT, I understand what it means to care and what it means to be afraid of the judgement.

You are doing what is best for him, and that is what is most important. Forget your judgey neighbor and anyone else with anything negative to say. Also, if they do? Let me know and I'll deliver a beautiful throat punch.

lislynn said...

This is just called Smart Mothering :) I'm a crunchy-granola-homebirthing-non-circing-delayed-vaxing mama and I still say there is a time and a place to use the medical knowledge we have to the BENEFIT of our kids. And I think only the mother and father of the kid in question can know for sure when that time and place is. Everyone else is just speculating. I hope and pray that he's able to wean off of them-- but I still think you made the right choice!

pcb said...

As a parent, all you can do is make the best call with the information you have and your own instincts. Sounds like you and your husband are doing that, so yay for you and the kids lucky enough to be yours! Either way the weaning goes, it's a win.

Anonymous said...

I just feel like I need to say good work - the decisions you make for your child, are always done with the best interest of your child at heart. There are always complicated choices, and many that leave us parents up at night wondering if they were the right ones or not. You did the best by your child, and that, is the best you can do. Dont listen to the judgmental people, he isnt their son.

Trish said...

No judgements from me. Having four children it has become very obvious that we have to parent each child individually and make decisions personalized to that child. It is obvious that you thought LNG and hard on the decision and did what you thought was best for your son. That is what a good parent does! I'm very happy the medication works for Tommy and I'm hopeful that he has outgrown epilepsy and doesn't need the medication any longer.

erica said...

You have done EVERYTHING RIGHT. The end. I hope the weaning shows him to be ok and seizure free off the meds but if not, I'm so glad it's worked so well for a year. A YEAR! Love you.

The Many Thoughts of a Reader said...

(((((()))))

Stephanie Wilson she/her @babysteph said...

Oh I am hoping for good results. I remember how dark the unknown can appear up ahead but also I remember how amazing the light is when it comes into view. He's done so well, you've got a lot to stand on and to hope for.

If Noah had benefited from meds, I have no doubt we'd have kept him on them. You have to do whatever brings your child healing and/or the best quality of life.

Steph

Julie said...

I'm so happy to read this and know you are finally where you were hoping to be when this started. You also know that I will be thinking about all of you ever day and hoping that weaning off the meds works; and also being happy that, if it doesn't, you have a treatment that is working and letting him be a normal little boy. So much love to all of you!

Kassandra said...

Wow! You are a strong, amazing woman! And a good mom who made the best choice for her child - no one should ever fault you that! Good luck with the weaning process - I'll be praying that it all goes well!

Jo said...

Exactly what Karin said.

"Hoping that this closes the door on this journey but so grateful they work in case it doesn't."

Would it be awesome for you to have a happy, healthy medication-free kiddo from this point forward? Obviously. But if that's not the case, then thank gods for modern medicine and the wonders it can do.

All the love in the world to you guys!

Such The Spot said...

As the a mom who started out as a teen mom and who eventually became the mom of a child with special needs, I've dealt with my fair share of judgments on parenting. I feel for you so much in that. Oh, Erin, but how anyone with half a heart could read this post and have anything but the utmost respect for you is beyond me. Not only do I respect your openness and honesty but so, too, do I admire you for parenting from a heart that is so clearly torn. I've been there, too.

Count mine with the prayers going up tonight for you, Shane and your sweet little rocket man. xo

Mel said...

I've been missing reading blogs and yours was one of the first I came to when I had a minute tonight. I think you are a fabulous mom! I've enjoyed reading your family stories and anybody can tell your boys are your world. I'm glad you put it all out there. Keep doing what your doing girl! Hugs!

Kyley Leger said...

Stupid, judgy people. It's sad that your neighbor felt compelled to pass judgement. Tommy is lucky to have such great parents. Hugs and prayers during the next journey. While it's scary, your doctor sounds amazing!

Kaycee said...

You did what's best for YOUR kiddo, knowing that YOU know him best. Don't let judgy people influence you if you can help it (they are so annoying). We all do the very best we can and I wish that as Mamas we could be more supportive of each other. I really hope that Tommy is able to come off the meds with no problems at all, but I'm also so glad you have something that works so well for him just in case.