Archives for posts with tag: EEG

IMG_5585I am looking forward to summer.

I want lemonade, fresh fruit, berry crisp, miniature golfing, and the feeling of the sun and heat soaking in.

I want less responsibility. Fewer things to juggle. A break.

To get to summer we’ve had to get past the last few weeks.

Grace had surgery last week in Minnesota to revise her mitrofanoff. We are hoping that will be her only surgery for the foreseeable future! She’s recovering well.

While we were in Minnesota Grace got all hooked up for an EEG. We were disappointed to discover that Grace’s EEG (a study of her brain activity) hasn’t shown any improvement since fall.   Her brain continues to experience a lot of back ground noise. We’d really thought it would be better after the addition of a new medication. In the last few months, we’ve seen better focus and more emotion. We’ve had her smile at us more. Her looks and eye contact have been so much fun. Her doctor reminded us that she’s not her EEG- if we are happy with what we are seeing that’s what counts.

Amid the highly scheduled past few weeks, we were alerted that there’s potential concern for her sodium levels so we are following up with some additional testing.

It’s easy to get trapped in the thought that Grace is all the things about her that we monitor and watch so carefully.   We have to remember she is none of those things. She’s a girl who loves to swing, loves music, loves to play, digs sparkle, and has a stubborn streak.

I saw that girl after her surgery. All snuggled under a blanket.

Before surgery I found myself overwhelmed with all the things about Grace. Her scars. Her medicine. Her past experience with anesthesia, etc. There is a crazy amount of information to pass on to the team of people we are entrusting with her care for an hour and a half.

I want a summer for Grace too. She deserves a break. We’ll never be rid of all the things about her. She’ll never drink lemonade or enjoy berry crisp. But she loves flowers, swinging, getting wet (as long as the water isn’t too cold) and being outside on a beautiful day.  We’ll work to spend the summer letting those things be the focus. I look forward to it.

Joy

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EEG at NightA few weekends ago Netflix recommended that Grace watch “High School Musical”.

I was introduced to the movie when Grace was one. She was hospitalized for something like fifteen days as she began the ketogenic diet. The keto diet is a high fat diet that changes how things work in your brain because your body is getting its energy from fat.

It didn’t go well. It threw Grace’s body off. I was with her by myself for a lot of it because Kevin had started a new job. I watched the movie a zillion times it felt like. It was oddly comforting. The words to some songs really got me.

“This is not what I want, this is not what I planned and I just got to say I do not understand. Something is really not right. Something is really wrong and we’ve got to get things back where they belong”

“This is the start of something new”

And the ending song “We are all in this together.” I cried a few times listening to that one.

It wasn’t just the songs. The whole concept that you don’t have to be defined by any one thing is in there.

That movie takes me back to that time in a powerful way. My love for a little Grace, the desperation to do whatever we could, all the cuts on her feet to check blood sugars, my panic that this would be an option that would fail, the absolute wonder I felt when it turned out that if we added 1/16th of a teaspoon of Morton Lite Salt to the formula that she would be able to do it. That’s not much salt – but it had a huge impact. I remember how tired I was from fighting my own emotions. I spent so much time holding her on a hard plastic couch watching that movie where a happy ending was shared by all. It helped me keep going in some way.

We were back on the epilepsy unit this week with Grace. They’ve built a new unit since we’ve been there last. It’s beautiful. There are pictures of dancing all around. In our mind it is the place to be if you’ve got a tough kind of epilepsy. Things for Grace didn’t go as well as we’d hoped. Almost nine years after that keto diet visit I found myself again thinking…this is not what I want, this is not what I planned, and I just got to say I do not understand.

There is so much about Grace’s brain that is complicated. It’s easy to get caught up in that especially when things aren’t going the way that you want. It’s easy to feel like we are helpless and only able to guess at what may work because there are no answers.   Unlike the movie this won’t be quickly resolved, but we have a plan.

We won’t let her be defined by one thing. Kevin, I, her doctor, her nurse, her team at school, we are in this together. And there is a whole team of people who make sure there is music and dancing in her life. It’s not exactly a Disney movie, but it’s our story.

Joy

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It’s epilepsy awareness month. I wish I was organized enough to come up with a thought for each day to share – instead I’ve made this list of 20 thoughts I’d like to share. My list isn’t super-scientific, and it’s filled with my own opinion. I hope it can be a conversation starter if anyone reading this wants to know more about our experience with epilepsy.

1. Epilepsy is random. Seizures happen, and most of the time there is no way to predict it. We know that Grace has more seizures when she is waking up (it’s a big transition the brain makes when going from sleeping to waking, so more can go wrong), when she is tired, when she is sick, and when she is stressed. The thing is that when a seizure comes, we just have to wait for it to stop before we can move on. Sometimes we are late. Sometimes dinner gets cold. (Sometimes I want a sign when I walk in late to places that says “Grace had a seizure and we were delayed.”)
2. People can have seizures but not have epilepsy. You are diagnosed with epilepsy when the seizures are recurrent and non-provoked.
3. For some people with epilepsy a helmet to protect your head is a must! For us, we never know when a seizure will happen, and we know her head can go crashing towards the floor at great speeds. So, Grace wears a helmet. Seizure helmets don’t however have to be brown. Grace’s first helmet was an ugly brown color. The man who ordered it didn’t give us a choice. In my opinion if you have to wear a helmet you might as well have a little fun with it. That is why Grace’s helmet is pink.
4. Epilepsy is a central nervous system disorder.
5. Infantile spasms (which was Grace’s original epilepsy diagnosis) is a rare form of epilepsy. It is considered “catastrophic”. Because it is so rare we quickly learned that we’d have to leave Des Moines to get Grace care. It took us two weeks to figure out what it was for sure. I’ll never forget our pediatrician looking at the small screen of our digital camera at a short movie we’d taken of Grace “crunching”. We had to wait 24 hours after that for her first EEG to confirm what we suspected.
6. An EEG (electroencephalogram) is a test that detects electrical activity in your brain. It takes about an hour to get it set up. Because they have to glue sensors to Grace’s head (and she doesn’t like people touching her head) it’s not a very fun process. Then they record your brain activity for about an hour (or longer). I have prayed for Grace to have a seizure more than once when she is hooked up to EEG wires so that the doctor can see what is happening. I have lost count of how many EEG’s Grace has had.
7. Epilepsy affects more people than multiple sclerosis, cerebral palsy, muscular dystrophy and Parkinson’s combined – yet receives fewer federal dollars per patient than each of these. (cureepilepsy.org)
8. Epilepsy doesn’t just affect a person, it affects a family. Grace’s epilepsy affects much of our family life. Not all in a bad way. It requires flexibility. Working together. Awareness. Travel. Multiple trips to Target for meds. Patience. Meetings. Paperwork. Emails. Home health nurses. Therapy appointments/exercises. Space in our home for all the medical things that we need for her. We are trying not to let it hold us back from doing things we want to do. Although I admit, sometimes we hesitate, or delay, in order to build our confidence that we can do what we desire.
9. The official color of epilepsy awareness is purple.
10. Epilepsy is not a monster. I belong to some national parent forums about epilepsy. They are helpful. But one thing that constantly gets me is how parents refer to epilepsy or seizures as a monster. I can’t do that for Grace. Here’s the thing. We have tried mightily and multiple things to stop Grace’s seizures. She has tried and failed at least 12 medications. We went so far as to have part of her brain removed. The seizures still happen. I am not comfortable with thinking that try as we might there are still monsters in our little girl. In our girl there is stubbornness, charm, knowing, goo, fun, thinking, wisdom, and innocence. No monsters. Not here. I want to clarify that I’m not judging those other families – I’m just telling you that is not the picture we are going to use here.
11. Epilepsy is isolating. It’s hard for people to understand. Relate to.
12. Grace has intractable epilepsy. That means that she still has seizures even though we are treating her for them.
13. Epilepsy looks different in different people.
14. Epilepsy is not contagious.
15. Epilepsy can’t stop you from dancing. With the right support epilepsy doesn’t have to keep people from doing what they want to do and enjoying life. For us Grace’s participation in dance signifies that.
16. The bathroom is one of the most dangerous places in the home for someone with epilepsy. Think of all things that can break, you can hit your head on, drown in, and there’s a locked door so no one can get to you. Ugh. When Grace is taking a bath nothing can interrupt that. I won’t leave her for anything.
17. Epilepsy is. I can be mad about it, sad about it, nervous about it, but it’s still going to be there. I’d like to help people understand it. Thank you for taking the time to read this.
18. There is no cure for epilepsy.
19. When we are asked to explain Grace’s epilepsy to her peers we explain it like this. We tell them that epilepsy means that Grace has seizures. We tell them a seizure is like a storm in Grace’s brain. Everything can be going along just fine…blue skies, beautiful day, and then all of sudden out of nowhere a storm pops up to disrupt things. (A seizure happens just like that.) The storm can be short or long but then everything’s ok again, the beautiful day returns. (The disruption in her brain is done and her brain goes back to doing its thing.) They seem to relate to that explanation.
20. I love someone with epilepsy. There’s a saying about how having a child is like having your heart walk around in the world outside of your body. I can totally relate with the thought. Grace having epilepsy adds more vulnerability and risk to that. It scares me at times. Her being out in the world has also brought some wonderful people into our lives.

Thank you again for listening.
Joy

ImageGrace and I just returned from an overnight trip to the Epilepsy Unit at Children’s Hospital in St. Paul.  On Monday she started twitching on her right side.  Her leg, arm, mouth, and eye were involved.  Without knowing what was going on – this was great cause for concern.  We ended up in the ER.  They were able to stop the twitching with some IV medication.   I talked to the epileptologist that day, and again Tuesday when it continued.  Tuesday we changed a med.  I talked to him Wednesday when it continued and he had me give an extra dose of another med.  On Thursday it continued – and I talked to him, (four days in a row talking with him- although he is wonderful- it isn’t exactly settling).    Friday I talked to him in person in Grace’s hospital room.  Grace had just gotten through the gluing on of EEG wires and looked him right in the eye as he walked in the room.  “Beautiful Grace” he said, “what’s going on with you?”  He peeked at the computer screen and told me “she’s not is in status.”  Relief.  That had been our fear.

Grace did a great job while she was hooked up on the wires.  She had big seizures, she had little seizures, she twitched… within a few hours of her being hooked up I knew that the doctor would be able to see what was happening in her brain – help us know what was happening now, and that we could make a plan for what would happen next.  No more guessing!

Saturday morning he delivered the news that the twitching does not read on her EEG as a seizure.  He can see her body twitching – but her brain isn’t showing him anything to have him be concerned that we need to get it stopped.  “It could be that we have caught really early the tip of something new” he said…”and someday we’ll look back on this and have an explanation.”  He went on to say  “She’s going to do things…. We’ll figure them out. “  (I really love that he uses “we”- I genuinely feel his love for Grace and his desire for her to be her best.) The VNS we are having put in at the end of the month might be just what she needs to help.

Then he went into this sailing analogy.  If he had 20 ships that were Grace, he would know our course more.  If he had 10 ships that were Grace he’d have a ok idea.  But, there is only one Grace ship.    “We’ve been doing this a long time my friend”  he said, “and I feel like we are in the Caribbean of Grace’s epilepsy.”  She is healthy, she is growing, she is improving, her seizures aren’t under control, but they aren’t running her life – “let’s enjoy this”.

He went on to compliment Kevin and I.  He said we run a tight ship.  We do the maintenance.  We work hard to keep our ship afloat.  We pay attention and shift course when needed.  We haven’t kept her at the dock, we are taking her out and she is doing things.

So we watch.  When we feel like she’s hitting rough waters we’ll call him and we do have some things we can do with her meds.  But for now we are just going to enjoy Grace – keep to the path we have charted.

And what’ s even cooler than that is what else we found out when Grace was hooked up to the EEG.  Our girl has recently started giggling.  Little girl belly giggles.  Just the most wonderful sound ever.   We thought they were seizures.  Turns out they are not seizures.  They are real giggles.  Amazing.

Joy