The beach

I sometimes joke with our doctors (Maddie has way too many for a two year old) that I am just going to run away with her to an island and swear off doctors forever. This week though, we actually ran away to an island in order to see a doctor. Okay so we didn’t really run away, but we did make a decision on the fly to head down to Wilmington where Maddie’s neurologist sees patients once a month.

On Thursday, Brandon was set to take command of his new Company and I really wanted to be at the ceremony. So when we found out that Maddie’s Neuro was going to be in Wilmington Thursday and Friday, we asked my fabulous Uncle Haywood if we could stay at his house at the beach, and hopped in the car.

So instead of counting seizures at home in Charlotte, we have been down at the beach since Wednesday. The view in every direction is beautiful and Maddie is really starting to like the beach and the ocean. My mom came with us to help out and to enjoy this beautiful place.

The back view

The back view

On Thursday, we all went to see Brandon’s change of command ceremony. It was so nice to actually be able to be a part of something for his job. I used to be a pretty involved Marine Corps wife, but since the leukemia diagnosis I have not been able to at all. My mom helped wrangle Maddie at the ceremony so that she was not too much of a distraction. I just have to say how proud I am of my husband. I honestly do not know how he has done it over the last 19 months. His job is tough without the insanity that is our life right now. I have no idea how he has been able to balance the two, not to mention how he has driven over 40,000 miles in that time to commute to see us each weekend. Thank you so much honey!

For those non-North Carolinians, Wilmington is 1 hour south of Jacksonville, where the Camp Lejeune Marine Corps Base is. Brandon works there and soon we will actually have a home there. So getting to hang out at Figure 8, just north of Wilmington, means we can see the doctor, visit Brandon at Lejeune, and have Brandon come down and visit us over the weekend.

On Friday we saw Maddie’s Neurologist at the Wilmington clinic. It is always nice to see him face to face since we have been making med changes lately via phone and email. Many of us IS parents have noted an interesting phenomena about doctor visits. For some reason, after a visit to the Neuro, we usually have a renewed sense of hope. It is like the act of simply making a new plan each time gets our hopes up that this plan will be the one that gets our children seizure free. A little hope is always good, but I tried to be more realistic this time. So instead of having just one plan, we went ahead and planned the next four steps, so that as we fail things, we know where we are going next.

First plan of action (POA): Wean off Topamax, as it has done nothing except make Maddie more out of it, and reintroduce Keppra. We tried it before her IS diagnosis and may have had some control with it.

If this doesn’t help, POA 2: The dreaded ACTH, aka AdrenoCorticoTropic Hormone. A nasty steroid that I will have to inject daily into Maddie’s muscle. At her IS diagnosis, we did Prednisone instead because the response rates are similar, it is much easier to administer, and isn’t so ridiculously expensive that our insurance is going to want to fight us over it. We have to wait to make sure insurance will approve it to start, as the company that sells it requires approval before they send it out (to make sure they get paid). The company has jacked up the prices to over $25,000 per vial of this stuff, so we will go through about $150,000 of it even if it doesn’t work for Maddie. Many IS parents have written about this, if you want to be disturbed, click here or here.

The ACTH option is a pretty scary one because it was due to steroids and their immune suppression that Maddie ended up in the PICU in late March. We think we have the UTIs under control now, but we will be taking every precaution to keep her healthy if we have to go this route.

POA 3: This one is happening no matter what, but the timing of it depends on whether or not we try ACTH. We are planning a visit to Dr Chugani. He is kind of the IS guru, and is located in Detroit. He will do some additional testing and tell us whether or not Maddie could be a candidate for brain surgery. It is an incredibly scary option, but one which provides a cure for many kids. We are doing this not because we think she needs surgery, but rather to exhaust all our options. He is incredibly well known and all of the IS parents we know who have seen him rave about him. So we will get our appointment dates Monday and hope not to have to change them. ACTH interferes with the glucose FDG PET scan that we will get of her brain, so we cannot have done it within 4 weeks of our visit. So that is now officially in the works.

POA 4: Somewhere in the next few weeks to months we will try adding a vitamin called Carnitine to see if it helps at all. This is one thing her brain could be deficient in, so we will give it a try. Having a deficiency in certain vitamins and amino acids can cause Infantile Spasms, but that is rare, and finding the exact vitamin necessary to fix it is like looking for a needle in a haystack. This will be the third vitamin we have tried.

So we have a new plan (or plans) and we are just trying to enjoy the time here at the beach, especially until the hope that comes along with the new plan wears off.

A few photos:





She finally said "Cheese!"

A special thanks to Haywood because we love it here. It is truly hard not to be happy here!

Love to everyone!

Liz, Brandon, and Maddie

Infantile Spasms

I want to take the time to explain what is really happening to Maddie right now. Infantile Spasms sounds fairly mild as a seizure type, but it’s name in no way accurately describes the effect these seizures have on the brain. Maddie currently has over 100 seizures every day. She wakes up every hour all night, with a seizure at least every two hours during the night. She can no longer walk unassisted. It’s not that her walking is suffering; she has seizures that make her fall down. And they come with no warning, throwing her down to the ground hard. Our Neurologist suggested it is time we get her a helmet. I wanted to suggest it is time he figures out how to stop the &”?*%~# seizures. But we don’t seem to be any closer to stopping them; they have actually gotten worse over the last two weeks. Instead of a helmet, we bought “walking wings” which are used to help a child learn to walk. It has a big strap around her chest with two longer handles that I hold onto behind her. This way when she starts to fall we can catch her before she hits the ground. This is not ideal, but it is the only safe way to let her walk.

I am trying to come to terms with Maddie’s diagnosis and what it means for her future. I know I have said this before, but cancer was a much easier thing for me to accept. There are just two outcomes, survival or death. And I knew how long the treatment was. I guess there is really a third outcome I had not considered, survival – but with lifelong health problems caused by her cancer treatment. Of course, any way she survives is better than the alternative. I selfishly want my child with me no matter what. And I will do anything and everything I can to help her lead a happy and healthy life.

But to watch your child regress and lose skills she once had is the most difficult thing we have endured during this whole journey, other than watching her in extreme physical pain. She is as loving and cuddly and interactive with me as she has always been, but her behavior is less mature and independent than it was 6 months ago. Her speech has regressed as have her motor skills. And if we don’t stop these seizures soon, it may get worse than this.

We are just getting started with the Early Intervention stuff, and I am sure it will help us work on the things she needs help with. I am learning so much from other parents of Special Needs kids, especially those whose kids have had IS too. For awhile, I was in denial that our child would too be a “special needs” child. I just didn’t want that for our child. I know that no parent does. But that doesn’t change how much I am going to love my child. It just takes an adjustment in thinking about what I want for her in life. And I will never get rid of those lofty goals either, I just may need to concentrate a little more on much smaller milestones for right now.

I have added some links to other IS kids’ sites and to more info about IS. I still have hope that we will get the seizures under control at some point, but the damage being done by them every day is very real, and I don’t know what it will mean for her in the longterm.

So I guess this post is a little less positive than most of mine, but this is our reality right now. My days are spent counting seizures and praying for a few more minutes in between. And, oh yeah, we also need to make sure she stays cancer free.

To end on a good note though, I added some new pictures of Maddie from this month.

Happy Girl

Happy Girl

I actually was unsure whether or not to post pictures, because in them she looks so normal. But there is nothing normal about having over 100 seizures a day. But I could not not share just how beautiful she is!

Love to everyone,

Liz, Brandon, and Maddie