A new diagnosis

So we know what is going on now, but are not yet sure what it means for the long term. They have diagnosed Maddie with a seizure disorder called Infantile Spasms. It has a wide variety of prognoses and at this time we don’t feel we have enough info to hypothesize about hers. This is very serious and we will be beginning a treatment protocol for it immediately. It means that for now we are stopping her chemotherapy protocol.

The drug that we will be using to try to stop the seizures is Prednisone, a steroid. We have previously used this drug in her chemo protocol and it should provide an anti-leukemia effect at the same time as it hopefully stops the seizures. So she will not be as at risk of relapsing as if we just stopped giving her anything to fight leukemia. In fact, the dose of prednisone we are giving is higher than what we gave in induction (for you other cancer parents) so it should have a good anti-leukemia effect and make our lives really interesting. We will be at the hospital in Chapel Hill for a few more days until we think we are getting some control of the seizures. At this time, we are not sure if this new diagnosis is related to her leukemia or her chemotherapy, but it seems very unlikely that they are unrelated. This is not a common side effect of anything we have given her to treat her leukemia.

This is not the way I intended to share news of the end to Maddie’s chemo, but for right now we are just rolling with the punches. Please continue to pray for our amazing child.

Hug your children and thank God for their health.

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I just wanted to let everyone know we are at UNC inpatient, getting the new video EEG. We arrived last night after being told they had a room coming available late Tuesday. She was hooked up to the EEG machine this morning. Please pray that we get some concrete answers this time.
Thanks for your support!

Love to everyone,
Liz, Brandon, and Miss Maddie

I just wanted to let everyone know we are at UNC inpatient, getting the new video EEG. We arrived last night after being told they had a room coming available late Tuesday. She was hooked up to the EEG machine this morning. Please pray that we get some concrete answers this time.
Thanks for your support!

Love to everyone,
Liz, Brandon, and Miss Maddie

Hanging in there

The optimism of last week has worn off a little and we are just trying to get through the days until we get more answers.  Unfortunately, the doctors at UNC were not able to find the evidence they wanted on Maddie’s EEG from Charlotte, so we have to go up to UNC for another EEG.

We started the new medicine right away but ended up discontinuing it very soon because her seizure frequency and intensity increased dramatically the day we started it. Now we know that was probably a coincidence, as seizure meds rarely do anything quickly. Instead, the cause of the more frequent activity was likely a change from a brand name drug to the generic form. Lesson learned: never do anything because your insurance company thinks it is best. We restarted the brand name seizure medicine Tuesday and are waiting to see improvement. She is currently having seizures around the clock again, which means sleeping is a problem, but more importantly, she has barely recovered from the last seizure when the next one comes on.

We have a hospitalization at UNC scheduled for Feb 26th to do the next EEG and to try to determine once and for all what is going on. We are hoping to move it up to the coming week, because we want to get answers and so it does not interfere with her current chemotherapy schedule for the week of the 26th.

Please keep Maddie in your prayers.

Happy late Valentines Day too!

Love to everyone,

Liz, Brandon, and Maddie

The longer version

I wrote a quick update last night, but I wanted to elaborate a little more about how our last week and a half have gone.

Last Monday (11 days ago) Maddie was due to begin her week of steroids again. We were very afraid to do them because it was at the start of a steroid week that her seizure-like episodes first began, and we were worried they would get worse with the steroids. At first they seemed to get worse, but then they started to actually get better, and by the weekend, they were almost gone altogether. On Monday, she actually had not a single episode until bedtime. That was the best day since December 29th when these started. And the really cool thing was that all day, while she wasn’t having them, she was essentially back to normal, playful, full of energy, coordinated, and very verbal. It was the first time in weeks that I have seen our Maddie be herself for longer than a few minutes at a time.

So that was really exciting because we thought maybe the seizure meds were starting to work. But by Tuesday, the episodes were back 4 times that day. And yesterday, they were there again too. But the important thing about that is that it seems that the steroids helped control the episodes, and that would only make sense if they are seizures. The neurologist yesterday felt strongly that if the steroids could control them that would mean it is seizure activity. So while we normally hate our steroid weeks, right now, at least we can savor them as they seem to keep the seizures at bay. Of course she is still crazy, emotional, and super hungry during them, but we will happily take that to get rid of the seizures for a few days.

So as I said in last night’s post, the doctor wanted to try another seizure medicine for her, so we hope to get that started today, but it will be probably a week before we can tell if it is working. Then we can begin to wean off the med she is currently on. The doctors at UNC were fabulous, and we will wait to hear from them once they interpret the Video EEG she had here. They suggested that if we have to have another one done, we could sedate Maddie for the hooking up process since it was so traumatic last time. So that was another positive thing.

Basically, where we stand now is that we have much more hope that they in fact are seizures and that we may be able to treat them. We also know that she is not getting worse, which was what our doctors feared so greatly when they told us it could be better to relapse than to have brain damage. At that time it seemed to be causing her to deteriorate quickly, but we have seen the deterioration stop on the seizure meds, even though the episodes themselves have not stopped. The most positive thing is that we got to see our old Maddie this Monday. So we know she is in there, but these episodes seem to make it hard for her to be herself all the time.

Maddie was a trooper yesterday. We had snow in Charlotte and it took us 45 minutes just to get to 485 (which usually takes us 5 minutes). So our trip to Chapel Hill was longer than intended. She had an episode in the car which is really tough, because she just wants to be held during them. We then spent 4 hours at the hospital in Chapel Hill and she was just great. It is sad that she is so comfortable in hopsitals but that is just a fact of our life!

My mom went with me to help out and Brandon drove four hours from Quantico just for the appointment, so it was fun for her to get to see him too. We loved the head neurologist there. He was great with Maddie and it was clear that they were willing to do everything possible to try to find out what is going on. They also want us to go in for a sleep study to see what is going on while she is sleeping, in case that is part of the problem. She has had sleep issues during this whole ordeal and the sleep/wake cycle may have something to do with the timing of when the episodes come on. On another positive note, somehow this week of steroids resulted in her sleeping through the night again. We have no idea how that happened, but it was most likely due to the fact that it stopped the episodes for a little bit. So we have had 4 good nights of sleep in a row, and that has done wonders for both of us.

So while we still have no concrete answers, we are hopeful they are seizures, and we are moving forward with treating them as though they are. Things have been improving for a few days, so we hope for that to continue.

All of your prayers and positive comments mean the world to us. Thanks so much!

Love to everyone,

Liz, Brandon, and Maddie

Quick update

I just wanted to let everyone know that our appointment today at UNC went well. The doctors spent over 3 hours on our appointment and we were very pleased with how thorough they were. They were not able to conclusively say they are seizures, but they are reviewing the earlier EEG to see what they can find. They feel what they saw on video and what we described looks like a seizure. If they are seizures, they are most likely coming from a part of the brain that is not easily detectable by EEG. We may still have to repeat the EEG, but we will cross our fingers that they can find what they need on the one she had done here. Either way, they feel the activity is so seizure-like that we are going to try a new medication to treat seizures. We hope that this one does more than the one she is on now.

Thanks so much for all the prayers and well wishes. I will update more later.

Love to everyone,
Liz, Brandon, and Maddie