Where we are now

I can’t believe how infrequently I have updated this blog over the last year. It’s been an interesting and busy year and we’ve had lots of changes in the last few months so I’ll try to touch on the important stuff.

We have moved to Raleigh. It was a smooth move on the Camp Lejeune side….I felt like things were going almost too well. I should have known it couldn’t be that easy. I left Brandon there mid-move to handle the last 2 days of packing and loading the truck. He had loaded all of the important stuff in a trailer which I brought here with me. Our plan was to get Maddie’s room all set up so that she was as unaffected by the chaos of the move as possible. So we had her seizure bed and most of her toys packed, as well as a few other pieces of furniture. We also brought clothes, food, cleaning supplies, etc so that we were prepared here. When we arrived (just me and a sleeping Maddie) the landlord was in the garage still loading stuff into his car and it was clear that the house wasn’t really clean and ready for us. That was a big bummer. Then over the next few days, it became more and more clear that he really hadn’t done what was necessary to get the house ready to rent. Not only did we have a pretty serious bug problem, we had mice. And they were in the house. Yuck! The master shower leaked into the breakfast room and it turned out to be the shower pan so we were without a shower for two weeks before it was repaired. There was a crazy “power saving” system installed in the house that randomly turned off our appliances (like the water heater and AC!) during the day because peak electricity rates are more expensive. Thank goodness we figured out how to turn that off! There are quite a few more strange problems, but luckily now, I think (fingers crossed!) we have them all fixed and we can finally begin to enjoy living here. We truly love the house, or there is NO WAY I would have put up with all the drama we’ve had moving into it. Definitely a crazy move experience.

I also had a random medical issue pop up during our move week to add to the craziness. I was born with pre-auricular pits, but I haven’t had any problems with them since I was 14 years old. But sure enough, 20 years later, on my 34th birthday, which was the day our furniture was delivered here, I could tell it was infected. I made time for an urgent care visit the next day for antibiotics, but it unfortunately didn’t do the trick. By Sunday evening I was in the ER in the worst pain of my life. Since then I’ve had the infected one aspirated with a needle twice and lanced three times. Not fun at all. I ended up having to take pain meds for a few days, which was awful. I didn’t feel competent to care for Maddie while medicated, so thank goodness my mom was here to help with her during the move. I think all is well with it now, but I may have to have surgery in the future to get rid of them so this does not become a frequent problem.

Brandon has started his new job here and it certainly looks like it is going to be a very busy 3 years for him. I’m trying to look at the positives about it, so I’m going to hope it’s a great new experience for all of us. It is definitely nice to be in a big city for a change. We are going to need to take advantage of family time when we get it.

On the Maddie seizure front, not much has changed. We tried Vimpat, which turned out to be a really terrible drug for her. She has now been off of it for about two months. We have not been quite ready to start something new for a few reasons. First and foremost, I wanted to give her a break. She is on two other seizure meds, so its not as though she is on no medication. But trialing meds is hard on her. She always has side effects and her sleep is terribly disturbed every time. Because her seizures are so tied to her sleep cycle, if her sleep is disturbed, seizures increase. So it makes it very hard to tell if a new med is working. I’ve learned I have to be much more patient in titrating and weaning meds, because we can never see the actual result of the med changes until her sleep is back to normal. And this can take weeks. So each med change becomes that much more difficult and slow. We definitely still feel a sense of urgency with regard to getting her seizures under control. But we decided the break was necessary to really get a true reading of what her seizure baseline is right now. Plus with the move, we knew she’d be dealing with lots of changes and we didn’t want to throw another variable into the med trial.

The second reason for taking the break from trying the next med is that we plan to get a second opinion (or fifth!) on what to do next. We truly love her Neurologist, but at this point, I get the feeling he doesn’t think that any particular med has a better chance than another in being the next best choice for her. Which means he leaves it up to me to make a choice from the few meds she has left to try. And that is a really tough position for me to be in as a mommy. I like having a say, but I don’t want to feel like it is all on me. So now that we are in an area where there are more large hospitals to choose from, we will have her seen at Duke (I know, I can’t believe I’d let a Dookie help…..) to see if they have the same opinion as we are getting at UNC. We will also be getting her evaluated as a surgical candidate again. I have been dragging my feet about this because I hate putting her under anesthesia for any type of scan, but it’s got to be done.

Another important reason to have taken the break is that for the last few months, a pattern has emerged that has made seizure tracking more difficult. She will have a few good days (just 1 big seizure, and lots of little ones) followed by a few terrible ones (4-6 big seizures, and  head drops almost continuously while she is awake). We have not really been able to locate a cause for the bad vs good days, but I needed a longer recording period to verify that we really were seeing those variations. When trying out a new med, it’s really easy to have a few bad days in a row and want to throw in the towel. But now that I am sure that those bad days are happening anyway, regardless of whether or not we are making med changes, it will make it *A LITTLE* bit easier to be patient and give the new med a fair trial.

All that said, we are here, and pretty settled, and its time to get back to work. I was hoping to get in with the second doctor before we made the call as to what to do next, but I think we’ll go forward with something (though I’m not sure what at this point…..) and then see the doctor when they’ll actually get her in to see them at Duke.

Our next step for Maddie will be one of three things: 1) Try another anti-epileptic medication, 2) try a low dose long term steroid treatment, or 3) reduce the level of one of the AEDs she is on (Banzel or Clobazam) in an attempt to see if either is still working for her. When we weaned Vimpat, Maddie improved in quite a few ways and it was a reminder that sometimes these meds’ side effects outweigh their benefits. Though we know Banzel was working very well for her when she first started it, once seizures returned, we kept raising her dose in an attempt to get rid of them again. And that never happened. So it makes sense to try reducing it a bit, to see if seizures possibly stay the same. Then maybe we might get a bit more development. Decisions, decisions. I just wish I had a crystal ball and could know what would give the most benefit.

Maddie had a good year in school last year. While she undoubtedly enjoyed it, and got to know her routine much better, she did not make any significant progress academically. We have enrolled her in school here and she will go to a summer school program for 3 and a half weeks in July. I’ll go with her at first, until I feel the aide understands her seizures and how to keep her safe. We got her classroom assignment for kindergarten, and while it was for the most part expected, it is still a hard pill to swallow. She will be in the Intellectual Disability – Severe classroom. That is the class for the most severely disabled kids in the school system. I know in my heart its where she fits, but for some reason, I had held onto hope that maybe she’d be one level up. Its not that I want there to be other kids worse off than her, but it just feels sucky to know that there is nothing below here. That if things were to get worse, there is nowhere else to go. But what I need to concentrate on is that this isn’t permanent, that if and when she improves, we can move her up. We had the opportunity to meet her teacher for next year and she seemed really great. I look forward to working with them to come up with a plan that is safe for her and hopefully where she has a chance to have fun and learn.

So that is where we are. And as usual, Maddie is her normal happy self and she just makes me the happiest mama on earth. I just wish I knew how to help her more. That is one of the most frustrating things about epilepsy. When she had cancer, it was clear what we needed to do, doctors had a clear plan and there were no options. Now, the range of options is huge. And in some cases, the choices are left up to us. And that is a heavy load at times.

On that note, I have made a big decision regarding my fundraising for the Marine Corps Marathon. I originally planned to raise money for both pediatric cancer and catastrophic epilepsy research. But I have changed my mind. Both causes are extremely important to me, but I have decided to be selfish. I am going to focus all of my fundraising efforts during MCM training on Infantile Spasms (her epilepsy) research. And that is because if a cure were found, or new, better treatments, they could still benefit my amazing child. I feel like the window is closing and we need to get rid of her seizures soon or we miss the time when her brain is still flexible and able to make new connections. There is a greater sense of urgency for our family to have innovations in epilepsy treatments. So that is where I want to focus my efforts. I absolutely want to continue to raise funds for cancer research and I will hopefully still participate in the CureSearch Milestones walk and will raise money with a team for that. But for my Marine Corps Marathon training, it is Maddie’s horrible battle with epilepsy that motivates me. And that is where I want to focus my attention. This was a hard choice, but it is right for me right now.

So here is the the website and if you feel called to help, we greatly appreciate it. http://cure.convio.net/goto/MaddiesMarathon

Citizens United for Research for Epilepsy (CURE Epilepsy) has agreed to allow all funds I raise to be dedicated specifically to Infantile Spasms research.

I’ll close up with a few pics of our cutie pie!

Love to everyone!

Liz, Brandon, and Maddie

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5 thoughts on “Where we are now

  1. Lots to absorb there,but overall you sound like you are moving forward, which is all you can do. I totally understand the wanting to take a break from the meds and especially getting a new opinion, which is key. I think any problem of this magnitude sometimes medical people get, I dunno the word, complacent?

    And they don’t necessarily MEAN to, but their contact with us is 9-5, they don’t live our lives, and I have found this to be true from the medical people who care for Bennett, to even the people who teach him. Shaking up the status quo can often make something new and promising fall off the tree. I hope it does for you.

    Thanks for the link on the Marathon. The pics, as always, are precious. You guys are never very far from my thoughts.

  2. Liz,
    You are an amazing Mommy and Maddie sparkles in every photo. Sending you warm thoughts, and big hugs. Maddie is always in my prayers, and will continue to pray that you will find a doctor and medical option or that one is found through research super soon to help your amazing girl. I will visit the marathon link later as I am on the run now, but I would love to support this special cause.

  3. Freaks me out a little bit when I think of the urgency and the time line but I have seen you and B have such a smart and well thought through approach to maddie’s medical options. Definately a role model for the rest of us. Super excited about the marathon fudraising. I am brainstorming how I am going to use this goal to help motivate me through my own training…love you guys. Kat, Leila, and Bill

  4. Hi Maddie, Liz and Brandon – so good to hear your news – of a move, and all about next steps. Sounds like you have some plans for next steps and I think that always helps – to at least know/create your own next steps for Maddie. She is lovely in the pictures and you are I just know in my heart doing everything you can for her……on an extremely challenging long term journey. I too really hope/think that another opinion might be very helpful at this time – I would be the same – always searching out answers.

    And makes total sense to me why you are focusing on the fundraising for infantile spasms – I get it.

    Bye for now, Connie (Sophie – previously with ALL = now 4 years off treatment with late effects) and Jenny – all from Canada and about to move ourselves in 2 days.

  5. So glad to get your update and to learn you will seeking another opinion. Maddie is always in my prayers for a cure to be found for her. She is still as beautiful as the first time I saw her on the Longview Golf Course. I am glad to support the marathon and admire you for all your efforts in trying to find a cure for precious Maddie. I hope Brandon is enjoying his new job and that the three of you are getting lots of good family time in Raleigh. Blessings to you.

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