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Living with NMO: Collin McDaniel’s Story

Nurse:

We’re right in this room right here.

Lisa McDaniel:

My son Colin was five years old when he had his first symptom of vision loss in 2007.

Lisa McDaniel:

We’re going to go in here and get some of the stuff we talked about done, okay? Where they’re going to take pictures and see how the blood works in your body. Okay?

Lisa McDaniel:

Colin’s always been healthy, never had problems. He just lost his vision completely in about two days.

Lisa McDaniel:

We ended up coming to Birmingham, Alabama to the Center for Pediatric Onset Demyelinating Diseases and saw Dr. Jane Ness there. She told us neuromyelitis optica, and we’d never heard of it. She explained to us that it was used to be thought it was severe form of multiple sclerosis, that it’s a very difficult disease, and proceeded to tell us that there could be times where Colin could be paralyzed in the future. He could lose his vision again, and just varying degrees of disability that he could have.

Lisa McDaniel:

Dr. Ness wants to talk to you, babe.

Dr. Ness:

I got to do a couple of things. I’m going to do it as quick as I can, but I got to look in your eyes. Okay? I know you feel awful. What we’re going to do… I know. I know. I know. I know you hate it.

Lisa McDaniel:

Hold my hand.

Dr. Ness:

I know you hate it. I’m going to do it as quick as we can.

Lisa McDaniel:

November 1st of 2008 we ended up moving to Alabama so Dr. Ness could take over Colin’s care.

Dr. Ness:

Can you find the three for me in the next two lines down? There’s a three there. Can you find another three, a smaller three?

Lisa McDaniel:

Do you see another three?

Dr. Ness:

Can you find it lower?

Lisa McDaniel:

Can you find one more?

Dr. Ness:

Can you find another three for me?

Collin:

No.

Dr. Ness:

No? Can you see it or you don’t feel like… Can you show it-

Lisa McDaniel:

Can you see it or is it blurred?

Collin:

My eyes are blurry.

Dr. Ness:

Okay. Neuromyelitis optica is a unibody mediated process, so that means that for some reason the body has chosen to attack spinal cord, the optic nerves, and other parts of the brain.

Dr. Ness:

Push.

Lisa McDaniel:

Good job.

Dr. Ness:

We almost popped a wheelie there.

Lisa McDaniel:

Good job.

Dr. Ness:

Alright are you going to do it again? Ready? One, two. Okay. So, strength feels good. Can he go up and down stairs?

Collin:

No.

Dr. Ness:

No? Okay. You don’t want to do the stairs? All right.

Lisa McDaniel:

He was a little wobbly going up the steps from the bedroom this morning.

Dr. Ness:

Do you want to walk a little bit, just here in the hallway?

Collin:

No.

Lisa McDaniel:

Still snoozing aren’t you? Plasma phoresis, it’s kind of like dialysis actually, but it’s a different machine. And they the blood out and filter it through the machine and pull out plasma and antibodies, and then they put donor albumin back in and then put it back in his body. But every time he’s had it before it’s really, really helped improve him, so we’re really hoping. Because right now his stomach’s not working. He can’t digest food. So, that tube goes down to his intestine and we’re hoping that he can have the plasma phoresis and his stomach will get better.

Lisa McDaniel:

Did you know there’s a lion behind daddy? No, here. On the wall.

Collin:

It’s not a real one.

Lisa McDaniel:

No, it’s not a real one. I’m glad, aren’t you?

Nurse:

Okay? So, the table’s going to move you in and out. Okay? Nothing to be scared of. Mom and dad, right here. Okay?

Lisa McDaniel:

Good job, baby. I got you. In August of ’08, they did what they call rescue plasmapheresis, which is where they do five to seven treatments to try to get him out of a flare up, and they did that and then followed that up with maintenance, which is just where he was on it twice a week every week to try and get him to where he wasn’t constantly flaring up.

Lisa McDaniel:

Collin had a fever when he woke up. I called the doctor, they said, “Bring him straight in.” We took him in. By the time we got to see him again, it was several hours later. They had come out talking to us, telling us that he had some kind of infection, that they thought it was coming from the central line that he had for the plasmapheresis. They had put him on a ventilator, and he was in pediatric ICU. We saw him, and when we walked in the room, he was incredibly swollen and he was purple blotchy from head to toe. They told us [inaudible 00:04:54] didn’t know if he would [inaudible 00:04:55]. He was in the ICU for about two weeks, and then he pulled through.

Lisa McDaniel:

Good. I know you’re sore. I know you’re sore. Where’s it hurt? There. Good job. You did so good.

Nurse:

[inaudible] right there.

Lisa McDaniel:

Oh, she spoke your language there, didn’t she?

Nurse:

Yeah. I will call you when I have a, I think Dr. is probably in surgery. That’s reason why we haven’t gotten no response back.

Lisa McDaniel:

So, have your cups? Let’s see then. Let me check Collin first.

Lisa McDaniel:

I think we moved here with the idea that we could come, get the help Collin needed, it would improve our life, it would be easy to find a job. None of that’s happened. My husband looked for a job really hard, has been unable to find one even now. And we’ve come to realize that it’s really a blessing that he is home and that he doesn’t have a job because I don’t think I could do it all right by myself.

Mr. McDaniel:

We just pray for Collin, that you take care of him and get him back healthy in Jesus’ name. Amen.

Lisa McDaniel:

The girls set the table, and they sit the extra plate for him so he’s part of us. He’s our son. He’s with us. And I think in another way maybe it still gives us that hope that maybe maybe his stomach will come back and he will be able to eat.

Lisa’s Daughter:

I have a question.

Lisa McDaniel:

What?

Lisa’s Daughter:

Where are we going after Christmas?

Lisa McDaniel:

I don’t know. Y’all get out, what, the 18th?

Lisa McDaniel:

It’s been very difficult, especially for our 17 year old who had her life turned upside down to move to another state and leave all her high school friends. We’ve adapted as much as we can as a family.

Lisa McDaniel:

You need to wake up. Yeah. Yolanda called earlier and said that Dr. Geroge’s had not looked at the the unigram yet, and so we’re waiting on him to look at the unigram and then let us know what he wants to do and when. So, we’re just kind of hanging out waiting on that. Hopefully she’ll talk to him today and he’ll look at it today and we can get it scheduled. If not, then they are trying to decide if they need to start IV steroids or go ahead and do something to try to head off the flare that you go into.

Collin:

Don’t go in the black corner.

Lisa McDaniel:

Can you pause that for a second?

Collin:

Why?

Lisa McDaniel:

So I can get your feeds going.

Lisa McDaniel:

Collin has so many medicines that he’s on. He’s also not able to go to the bathroom on his own, so he has to be cathed every four hours. It takes both of us really working with him around the clock.

Mr. McDaniel:

And about a month or two ago, just taking him and the two girls to school, and he got sleepy on the way to school. Got him up, got him dressed, got him ready. I couldn’t wake him back up. We just had to, well actually I think I called you and had you come get him. Because we just did not really what was going on. And it’s those moments like that, well do you take him to the hospital? Does he just need rest? And you have to try to make those decisions.

Victoria Jackson:

It is so, so nice to see all of you here today.

Lisa McDaniel:

To go to LA, it was the most amazing thing. There are people that we’ve been talking to ever since Collin was diagnosed that we’ve never met in person, that have really helped us to learn about this disease. And we’ve talked to them on the phone, some of them we talked to them online. To be with those people was just probably a chance I would never have.

Lisa McDaniel:

I have a seven year old son who was diagnosed in May of 2008. He has been through steroids IG, rituximab, plasmapheresis. He’s now getting cytoxan.

Lisa McDaniel:

We’re looking at stopping Collin’s cytoxan in December. That’ll be his 12th dose, and he’s been on a year. And the way the doctors have explained it to us is that the cytoxan carries a lot of side effects, especially risk of certain types of cancers that increase after a year, so they want to get him off of it. So, we’re looking at this point for what our next option is as far as treatment.

Benjamin Greenberg:

Even though you list a long litany, I was listening to at least four different interventions. Believe it or not, there are still very good options on the table that we’ve had success with.

Lisa McDaniel:

And talking with Dr. Greenberg, and him just telling me not to give up hope, he would talk to us and work with our doctors and find something that would help Collin, was probably the best thing.

Lisa McDaniel:

In January when they started the cytoxan, after a couple of months he started getting a little better, but now it’s like about every third month he’s flaring and he recovers somewhat in between. But he still struggles with a lot of issues in between.

Benjamin Greenberg:

The cytoxan in the intermittent regimen over the long run has risks associated with it. There are other ways we could go in terms of trying to quiet things down. Let me give you our information, and we can set up a good time to talk, and I’m happy to talk. The folks at UAVR are wonderful. They do just a spectacular job.

Lisa McDaniel:

Before we went, we didn’t know what his next treatment was going to be or what his future was going to be like, but through Dr. Greenberg, I guess I kind of came away with hope.

Collin:

Cold.

Lisa McDaniel:

You’re cold?

Collin:

Uh-huh (affirmative).

Mr. McDaniel:

It’s just a daily thing. Is it going to be a good day or is he going to sleep six hours today? When he feels good, he thinks he ought to be able to climb walls, jump up and down, run around, do whatever you want, but if he does that for very long, then he’s exhausted the rest of the day.

Lisa McDaniel:

Yeah. The rest of the day he’ll be sleeping, so we try to teach him to maybe not go full force but get a little bit slower so he can last longer. But he doesn’t understand that yet.

Collin:

I’m good at this game.

Lisa McDaniel:

I know you’re good at it.

Collin:

So are you, mama.

Lisa McDaniel:

We’re looking for something at this point that’s going to give him more time in between those flare ups, more time for him to enjoy what he can of his life.

Mr. McDaniel:

That’s probably our greatest desire. Yeah. Of course, for him to be where he doesn’t have this illness, but even if he can go for six months where he does the things a normal seven year old does-

 

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