Friday, January 19, 2018

Our Hard Road

I wish I could say that our hospital days were fruitful.
 
I wish I could say that our little girl is now seizure free.
 
I wish that I could say that the pinching, hitting, angry little girl is a thing of the past.
 
I wish.
 
It's been a brutal few weeks.
 
 
 Our hospital days didn't get us any closer to finding the right drugs to ease Mary's seizures, but it did provide us with a diagnosis.
 
I was there alone when the team of doctors came into the room. I was there alone when they gave me the good news/bad news scenario. Mary has a form of epilepsy that doesn't usually affect cognitive development. That was the good news. Mary has a form of epilepsy that is extremely rare and extremely hard to treat. In other words, expect that she will never be seizure free.
 
 
How do you hear that with a team of doctors standing there watching to see your every reaction? UVA is a great teaching hospital and is the best hospital in Virginia for epilepsy. Mary's neurologist admitted her to UVA, but once you are admitted you are turned over to the team and your regular doctor hangs in the background. I'm grateful for the team of doctors, but at times like those I would have rather had our doctor sitting my husband and me down and having a quiet heart to heart.
 
I didn't cry.
 
I asked intelligent questions and responded with toughness and fortitude.
 
But my heart was bleeding inside.
 
How can I stand there and listen as they tell me that we need to accept that she will probably never be seizure-free?
 
It didn't help that little girl spent her entire time at the hospital taking out all her anger and frustration on me. We were on 24 hour monitoring so everyone in the EEG room got a front row seat as she pinched and screamed and yelled at me.
 
She was a tad better when Papa was there but still on total edge.
 
Having her hooked up to EEG monitoring just made the stress even harder to bear. Each time she had a seizure we had to press a button, tell them over the intercom that she had a seizure and a nurse would come running in the room. It became a bit comical to have the nurse running in and then in again and in again in a matter of a few minutes. After the first night of that crazy, we were able to talk them into just letting us push the button and tell them over the intercom that she was okay.
 
Our time in the hospital was disheartening. We came home with a little girl who was emotionally wrecked. Her behavior tanked there, and we have been struggling to get our sweet little carefree girl back. The medicine she is on has not helped that struggle. We are now in the process of once again changing her meds in hopes of getting rid of the one that has affected her behavior.
 
One of the biggest learning curves we have had on this journey with Mary is that epilepsy medicine is hard core stuff. You can't just change medicine out at will. It is a long process to add a drug or remove a drug. Each dosage change affects our little one in a multitude of ways. Some make her dopey and zombie like. Others make her hyper and unable to focus. She has weeks where she won't eat anything and weeks where she stands and begs for food all day long. The one drug we are backing off on causes rages in some children which we have definitely witnessed.
 
But we have also learned that Mary can't be without seizure medicine. We were ramping down her drugs at one point and watched her seizure level skyrocket. She has a serious form of epilepsy and going drug-free is not an option.
 
Finding the right treatment for Mary is a long-term process. Yes, we are talking seriously about CBD oil. Yes, we are talking seriously about putting her on the Ketogenic or a similar diet.
 
The diet is actually the best treatment for her type of epilepsy.
 
 
It's also the one that causes us the most anxiety.
 
Our little former orphan is typical of most orphans. Food is a HUGE deal to her and when we look at the list of foods she can't eat on any of those diets we just look at each other in total dismay. Those are her happy foods. The foods she rejects at most meals; those are the main foods on the diet.  I honestly have no idea how we will implement a diet with her, but we know that we will eventually have to cross that bridge and wage that war.
 
 
For now we are muddling through our days. We have few moments right now where we get to see Mary smile. Most of the time she is frustrated, angry or whining. We took her sledding which solicited a few giggles amidst her fussing. She's happiest outside so we try to give her as much outside time as we can.
 
 
I wish there were easy answers and quick treatments and fast fixes for our little one.
 
I wish I didn't have to wear a clicker from my belt loop to count her seizures.
 
I wish I wasn't the target of her frustration and anger.
 
I wish I could say that I always react to her with gentle words and great patience.
 
I wish.
 
It's a hard road.
 
We are deep in the trenches with her.
 
 
Our little boys are hanging in there, but it hasn't been easy for them. Aaron has watched us struggle in the trenches before, so he is less bothered. It's a whole new ballgame for John who is used to being the focus of all of our time and energy. He's doing a whole lot of watching and processing. We are hoping that through this he will also do a lot of maturing!


 

It's a hard road.
 
 
We are grateful that we have a neurologist who does care and who is actively involved in helping us find answers to Mary's epilepsy. He has not written her off and has made it clear that his goal is seizure free.
 
That's our goal too.
 
Seizure-free for our littlest!
 
 

 
 

18 comments:

  1. Hey, sweet tired mama friend. You're doing a really good job. You've learned faster than a med student and are balancing all the things and learning all the things. You're amazing.
    As you look into the Keto diet... I'm just brainstorming here... how does she do with soups? I have a lot of new keto-tubie mom friends who make blends for feeding their kids through a feeding tube. Some of them might actually taste yummy as a soup. If she doesn't like soup, then that's no help, though!

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    1. Oh I wished she loved soups. She HATES them! Like Aaron before her ... she wants nothing to do with soup or most breads because that was her staple for too many years. It took Aaron 5 years before he would eat soup. Now he loves them.

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  2. Oh, Julia, this is heart-breaking, but at least now it's clearer what's going on. Great news about cognition, too.

    Would surgery be possible, to take out the damaged areas? At Mary's age, recovery would likely be swift and complete...though I'd hate to put her through the experience, the outcome might make it the right choice - if it's an option, at all, that is.

    Hugs and prayers all around for everyone. I'm glad Mary is enjoying the outdoors - that's a blessing for everyone.

    Susan in Kentucky

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  3. Hello again,

    I just typed a comment regarding a great trauma support group for dealing with all the issues *besides* epilepsy.
    https://www.facebook.com/groups/parentingwithconnection/

    I hope this helps!

    Big hug!!

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  4. ...and with the epilepsy, now that you have at least a name for this rare form:

    Reach out to the support networks/facebook groups for epilepsy out there on the web and social media and see if you can find others around the world who suffer from the same form. Maybe some of these can share what has worked for them...
    Prayers!

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  5. Oh, Julia. I'm so sorry. You are doing such good work. Sue Berres

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  6. Thinking of you Julia.

    Sue H.

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  7. Gently, I know all are under stress but teach Mary to direct that stress on something inanimate. Pinching you should not be acceptable. You are in my prayers.

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  8. Julia,
    I have been checking your blog for an update. I'm sorry you all are facing this. I know the Lord was right beside you when the team of doctors brought the news. He will never leave you, nor forsake you, or Mary, or any of the beloved Nalles! May He give you strength to persevere and cling to Him, and see the joy. I will keep praying!!!!! Much love- Kelly

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  9. Our ministry is involved in supporting orphans in one of the Ukrainian orphanages in Shpola on a constant basis. However, we also need support. Find out how you can help and support the orphans in Ukraine on the link https://hopenowusa.org

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  10. Julia, I am crying with you right now. So much love and prayer for you...

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  11. I have a friend who led the fight, and won, here in PA to legalize medical CBD oil. Her daughter has intractible epilepsy and was truly just the shell of a child after medications and diets. After seeing her results from using the oil, I am a believer. The transformation has been incredible, and nothing short of a miracle. It sounds like Mary has a different diagnosis, since you mentioned it shouldn't affect her cognitively, but I just wanted to let you know that I have seen with my own eyes the amazing effects of CBD oil and offer you a small bit of encouragement. I know you don't know me, and I don't know you other than reading your blog since shortly after you brought Aaron home. My heartfelt prayers to your whole family...

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  12. Prayers Momma. Sometimes there are no words but prayers for you and your family.

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  13. There are no suggestions, directions, or recommendations I will give as I'm certain you are doing the very best for all of your beloved children! Prayers for you all as you process, and help each other process the day to day (moment to moment) changes. 💓

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  14. I am praying for you, Julia. I think of you and your family often. God is with you 💗

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  15. Julia, I have a friend who works in a medical marijuana dispensary and she has been sharing some incredible pictures of a child who was having multiple seizures an hour but is now seizure-free. You can see the before/after photos of the child here: https://www.facebook.com/sweetsupernova/posts/1594065237351480?pnref=story
    Here is the page: https://www.facebook.com/sweetsupernova/?hc_ref=ARSGZcNVCI1VZ58upcsO7g_NmvdSiutBWlOtohv6M70kYWl5YkWACjJjLsOnfwCre-Q&fref=nf
    She has had one regression, they think because of an infection, but is now seizure-free again.

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  16. praying tonight for peace to reign in little miss marys heart so you can find a path out of the trenches.(or at least an oasis in the middle of them!)

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  17. Thought you might like this: http://elizabethaquino.blogspot.com/

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