On my birthday

In my last post, I said I’d mainly update y’all  if there were major changes or events. So today on my 35th birthday, I thought I’d check in and let you know what we’ve been up to…..

We have bought a new home and moved. We couldn’t be happier with it and we are so relieved to be out of our rental. Both my parents came to help with the move and we were able to do it with virtually no disruption to Maddie’s school and therapy schedule, which was really important to us.

We also had help from Maddie’s new babysitter. For years, I’ve tried to manage everything day to day on my own, but with her extremely busy schedule of school and therapies in our home, I barely have time to keep up with grocery shopping and meals. We finally found a CNA who Maddie really loves and who I feel I can trust to take good care of our little princess. So for a few hours most days, I have help now and it has been amazing.

There has also been a major change to Maddie’s schedule. Though she is still waking some during the night or a little too early in the mornings, she has been on a pretty normal sleep schedule a few days after my last post in mid January. We saw a sleep neurologist at Duke who really listened to my explanation of what was going on and with just a few little tweaks to our bedtime routine, her melatonin dose, and her morning seizure med timing, we have found a successful method for maintaining a normal bedtime.

It’s been a truly life changing improvement for the whole family. It means that for the first time since Maddie developed epilepsy over 4 years ago that Brandon and I know we’ll actually get to see each other every day (that he’s in town). We can actually eat meals together and have time just with each other after her bedtime. When her schedule was constantly moving, for 2 weeks of each month I needed to be asleep when he was home from work so it meant lots of tiptoeing around the house and barely seeing each other.

We are so thankful that the sleep issue was fixable. After so long with crazy sleep we were concerned that’s just how it would always be and that was pretty depressing.

Stabilizing her sleep has been great for many reasons, including her seizures. She has always had seizures tied to sleepiness so now that she is sleeping better, she has less of the clusters of drops than she was before. Unfortunately, her bigger seizures, the long tonic ones, have not gotten better at all. They vary widely and it is really frustrating as I just can’t seem to figure out why some days are terrible and others are great.

We recently began a trial of a new medicine, Zonegran. Actually she had taken it 3 years ago with some success, so we wanted to see how it would work in combination with her 2 other seizure meds. It is considered one of the safest, most used drugs out there for kids. After the second dose, Maddie began having a cluster of seizures that would not stop. It went on for hours before I finally was sure of what was happening and that there weren’t really breaks between them. And we had to give Diastat, an emergency seizure rescue medicine. Even that took a while to work which really scared me.

When trying a seizure med that has worked for your child before has such scary results, it makes you afraid to try anything new. But we have to find something to help her. She will never develop AND it’s really difficult to keep her safe when she is having seizures so often every day.

So our next step is to consider the surgical options available to her. The Vagus Nerve Stimulator is what one Neuro suggests, but the other isn’t super enthusiastic about for her. Another possibility, the Corpus Collosotomy, is a surgical procedure that might improve her quality of life (make her seizures less dangerous) but which probably won’t help with development in a meaningful way.

Both of these options could be done by a Neurosurgeon at Duke. But both scare me and don’t offer a tremendous upside. We have appointments May 28 with the Duke Neurologist and Neurosurgeon to talk about these options and come up with a plan.

But because we are not particularly enthralled with either option (though I feel they are really all we have left), we are taking a quick trip up to Detroit again on Monday. For those of you who’ve followed Maddie’s story for years, you remember our trip to Detroit in 2009 where we hoped to find Maddie to be a surgical candidate for some type of resection or a complete hemispherectomy. Those surgical options, though much more invasive, have better outcomes developmentally than the other options we are considering. She would only be found to be a candidate for either of those if diagnostic testing suggested an area of the brain that might be the cause of her seizures, which could be safely removed without too much loss of function.

None of Maddie’s current neurologists think she would be a candidate for those types of surgery, but before we move forward with the very permanent Corpus Collosotomy, we want to make absolutely sure. So Monday morning, Brandon, Maddie, my mom and I will all fly to Detroit where Maddie will have an overnight EEG and a PET scan under sedation Tuesday. Then we’ll meet with the famous Dr Chugani Tuesday afternoon and then fly back to Raleigh. I’m not getting my hopes up that he’ll be able to help her, but we feel it’s worth a shot. Even if she is again found not to be a candidate for surgery there, it’s always nice to get another opinion, and he’s certainly got the experience with kids with her type of epilepsy.

So in closing, on my 35th birthday, I can’t help but think back to my 30th. We were in the midst of tough chemo for Maddie and I truly didn’t know if my daughter would survive her battle with leukemia. Five years later we are in a very different place than I expected……because her seizures had not begun yet and she was a normally developing 18 month old then. But I am nonetheless extremely thankful for where we are and that she is a five plus year survivor of her poor prognosis leukemia. While I long for her to catch a break and to find a cure for her epilepsy so that she can know what it is to truly enjoy life, when I think about what a happy little girl she is, I know that we can manage however this all plays out.

For those of you that pray, we’d love prayers for safe travel and that we get some positive way forward in Detroit.

A few pics from Easter:

Love to everyone,

Liz, Brandon, and Maddie

2013

I am incredibly thankful for those of you who come here to read about our Maddie. But I’m doing a terrible job in keeping up with it……so I’ll try to give you a long update now, but then I likely won’t update again unless something changes significantly. It really isn’t that much fun to keep reporting how little things have changed. Maddie was 6 in November and things are about the same as they have been for 3 years.

As I sit here at 2 pm on a Sunday watching my child sleep, it is clear to me that her sleep issues cause us as much difficulty trying to lead a “normal” life as her seizures do. It may be the seizures causing the sleep issues, or the seizure meds, but since moving to Raleigh last May, her sleep cycle has been continuously moving. I know it’s tricky to understand, but what happens is that she just stops wanting to sleep when she should and basically napping whenever she feels like it…..then eventually one nap will become longish and it will become her night. And for some reason that’s always in the morning……

You might ask, why don’t I just force her to be awake during the day? Unfortunately if I wake her, she has seizures, and it happens every time I wake her. And if she wants to be asleep, she’s going to keep falling asleep so I’m going to end up waking her repeatedly only to keep causing clusters of seizures that make it impossible to enjoy any part of her day. So I try to let her lead, but I work hard to “correct” her sleep pattern to a normal one once it becomes clear when her night is. The catch is that once I get it normal again, it usually only sticks for about a week. We finally see a sleep doctor this week and I suspect a sleep study is in our near future.

I worked super hard on her sleep and had it close to normal for Thanksgiving and Christmas. Which was wonderful since we had Brandon home with us this year. Brandon had a few days off for each which was the most we’ve seen him since the move to Raleigh. The recruiting hours are no joke, so between Maddie’s crazy sleep and his crazy work hours, there is not a lot of time together these days.

Seizures are about the same. We aren’t trying something new right now, we are instead reducing her current med levels. After failing the steroid treatment, we began a gluten and dairy free diet for Maddie and had an initial positive response to it. But it was quickly gone and her sleep got really wonky and she began to seem overly sleepy a lot of the time. It didn’t seem likely that eating this healthy diet would be bad for her, and so we tried to figure out what else it could be. The only thing we could come up with is that maybe after eating better for awhile, her GI system began to work better and was absorbing her meds better. Which might explain why she was suddenly seeming overmedicated. So since she has been on two of her meds, Banzel and Clobazam, for well over two years with no success for the last 1.5 years, we thought before starting something else new, we’d try reducing them a bit to see if in fact they are working. And in doing so, we can also see if we get some improvements in clarity without sacrificing seizure control. And so that is what we’ve been doing since September. So far we’ve reduced Banzel four times and though we always see an increase in seizures immediately, by 3 weeks after the change, she has been basically back to her baseline. So it is slow going, but she has more energy, clarity, and personality than she has had in a long time. So it is worth it.

We’ll try weaning the Clobazam a bit next but since it is a Benzodiazapine, we are more worried about how she’ll tolerate the wean. It will be even slower and we expect it might not be as easy. The goal here is not to take her off meds, but to reduce the levels and see if we have any subsequent seizure  increase as we honestly aren’t sure if they are working much at all. That way we can reduce med side effects (extremely slow development) before we introduce a new drug.

We have had a terrible experience with Wake County public schools so far. The class they have put her in is little more than a daycare. So for now, she gets what is called home hospital, where a teacher comes to our house and teaches her for 45 min 3 days a week. She also has ABA therapy in our home 4 days a week for 2 hours each day. We are working on adding in speech, PT, and OT, but based on her sleep craziness, we’ve had trouble scheduling her current therapies and we hate canceling every other week. I’ll continue to work with Wake County special education to see if they can place her in a classroom where I have more confidence there is actually teaching going on. But until then home hospital is a good stopgap measure.

 

So my goals for the year for Maddie include trying another med or two and if they fail, we’ll be seriously considering Corpus Callosotomy surgery. We’ll try to get a handle on the sleep issues and do our best to get in as much therapy/school as she can tolerate. With the help of our ABA therapists we may undertake a serious potty training regimen, but it’s still unclear if she has all the skills and understanding necessary to potty train her. Because of the seizures, we can’t let her sit alone in a bathroom without strapping her down. And we’d like to avoid making potty time feel like torture. But it would be a huge step for her (for ALL of us) and we think we need to give it a shot. This is as good a time as any since she isn’t in school right now, so she would be under my care in her home environment all the time.

And while all of this sounds terrible, or at least not very promising, the fact of the matter is that Maddie is the sweetest, most precious kiddo to be around. Her therapists and teacher just love her. I can’t imagine having a more amazing child. This certainly isn’t how I expected things to be at age 6 for her, but she is happy, she loves her family, she has incredible spunk and is just as stubborn as both her parents……so we just focus on the good stuff and trudge through the bad hoping we can make things better for her.

Thanks again for your love and support!

Love to everyone,

Liz, Brandon, and Maddie

We did it!

We survived the marathon! Both Brandon and I had some injury issues going on but he still had a great race (3:37) and I had a decent race (4:34). I won’t make excuses, I know it’s my first marathon, but I’m competitive and planned to run a very different race than I did. But I did it, and it’s over……the most important thing is that we raised lots of money for epilepsy research and I’m thrilled with that!

I can’t thank you all enough for making my fundraising so successful! When I was really hurting at mile 19, I reminded myself that lots of people had faith I could do this and that I had to keep on moving! I spent a lot of the race thinking about how lucky I am to be healthy enough to do this. It was extremely motivating to have competitors on the course who were missing legs and competing either with prostheses or using hand-cycles. There were also lots of people pushing strollers so that children or adults who cannot run can experience the joy of competing in a race. Seeing those folks reminded me to enjoy the moment and not get so down on myself once I realized I wasn’t going to meet my time goal. All in all it was a great experience. I am so proud to have done it.

I also cannot thank my mom enough. As usual, she stepped in and took care of Maddie so that we could go out there and compete together. It was supposed to be a fun trip outside of the race, but due to weather and other obstacles they were mainly stuck in the hotel and she did a fabulous job of keeping Maddie entertained under those circumstances.

We got out of DC just before Hurricane Sandy really made landfall. But we felt her wind during the marathon and had very wild weather on the drive home yesterday. Our prayers go out to those affected by this crazy storm. We were thankful to get out of there before it got bad. That was certainly an unexpected factor in our race weekend.

I’ll update more later regarding the shirts and the fundraising total. It’s somewhere over $7000 with pledges made that haven’t been entered on the site yet. My goal was somewhat arbitrary, and I’m really pleased to have raised so much for epilepsy research. I’ll also post some race pics once I’ve downloaded them.

Thanks so much for your support! Love to everyone!

Liz, Brandon, and Maddie

Well it’s the day before our marathon! I am so excited! And nervous! And there is a hurricane coming…..what funny timing…..Which will make us even more awesome for completing this race.

Maddie and I have been sick this week, so lots of the things we needed to get done just didn’t get done. Oh well, we’ll live. One thing I did get done is to have shirts made for Brandon and I to wear in the race. And the design is so awesome, I want to share it with y’all. I’ll have the page up next week and will post it here then.

You’ll be able go to my page on the spreadshirt website and order a shirt if you’d like. Initially I planned to sell shirts as part of my fundraiser but I procrastinated too long for that. So if you want to show your support for Maddie by wearing a shirt, check them out (next week). There are a few to choose from. The shirts say “Team Miles for Maddie”. So if you want to be on our team, all I ask is that the next time you go out for a run ( or a walk or a bike ride……) that you spend a few minutes thinking about all of the children who cannot do those things because of epilepsy. Though Maddie can walk (with assistance for safety) many children with her type of epilepsy never walk or run or even crawl. The seizures often begin so early that these children never get the chance to experience normal development. So even though epilepsy may not technically take their lives, it robs them of the opportunity to experience life in the most basic ways. So…..please take a moment to recognize how lucky you are and think about (or pray for) all of the amazing people who struggle because of seizures.

I’d like to thank all of you fantastic people who have donated to my fundraiser. Many of you even did so anonymously, but I know who you are! And I couldn’t be more appreciative! If you haven’t donated yet but would like to, here is the site.

I recently found out that some of the thank you emails I sent our via the website were not received. I have no idea why but I’ll be following up with the folks from CURE next week to find out. If you donated and haven’t received thanks, I’m so sorry and I will remedy the situation as soon as I run a marathon!

One important thing to note about epilepsy research. Even if epilepsy isn’t the cause you feel most personally drawn to, it is research that benefits more than just those with epilepsy. There is so much still unknown about how the brain works and why meds work the way they do on brain activity. Treatments for epilepsy often end up being used in other ways, like to treat migraines, mental illness, and many other neurological problems. So your dollars can help more people than you realize when you support epilepsy research.

I’ve been meaning to write more about what has been going on in Maddie’s life and in treatment so I’ll give you a shortened version and expand upon it later once all the marathon craziness is behind us.

Maddie had two monthly rounds of extremely high dose steroids in an attempt to control her seizures. While we saw some initial improvement, it wasn’t enough to continue such a potentially dangerous treatment. After failing that her doctor felt our next best option is the Vagus Nerve Stimulator, an implanted device. You can read about it here. While I see the possible merits, I am just not quite ready to go that route. So while I try to get myself (and Brandon) mentally on board with that option, we are trying some less drastic changes.

We recently put Maddie on a gluten and dairy free diet. We saw some pretty good results at the start of it so we are sticking with it. Unfortunately seizures have fluctuated quite a bit so it’s hard to know how much improved they are. The dietary changes have been easy for her, but a bit harder for me since I now do A LOT more cooking and less takeout. It’s definitely better for all of us (Brandon and I have gone gluten free too just to make meal preparation easier on me). But it is more work.

We have also reduced the level of one of her seizure meds a bit, and we plan to wean it to a much lower level to see if we can get some developmental improvements. At this point her seizures are so bad that we aren’t sure that either of her meds are working so we will likely add something new soon too, but we wanted to at least reduce one of her current drugs so that she isn’t so heavily medicated. The dose reduction seemed to cause an increase in her seizures, so we have stopped reducing for the moment. We aren’t sure what is causing the increase, it could be the fact that she hasn’t slept well since we changed the dose. And now with a cold and sore throat,  there’s another variable thrown in that could be a factor. So we are waiting for her to get back on a more normal sleep schedule before we resume the wean. It’s always interesting here!

So that has all been complicating “normal life” for us since the move. The other most important thing for Maddie has been her transition to Kindergarten in Wake County. Unfortunately, I can’t say that I’m pleased with it in any way. We had been in one class since the start of the school year and have been trying to give them time to figure Maddie out and how to meet her educational needs. But it just isn’t happening. And so now we’ve begun the process of asking them to change her placement. We are hoping to put her in the Autism class as those teachers are trained in structured teaching which has been most successful for Maddie in the past. So we are again at the mercy of the school system waiting to see where they place her next. It’s funny, I knew we were happy with the Department of Defense school at Camp Lejeune but I had no idea how much better it would be than the public school system in NC. You don’t know what you’ve got until it’s gone, I guess. Her teacher and I weren’t always in agreement, but she was always aggressively pursuing ways to teach Maddie. Here I have to beg for them to teach. It’s essentially a daycare for disabled children. And I’m not looking for daycare for Maddie. So we push on, hopefully I’ll have better news on that front next month.

Another piece of the educational puzzle that is just now coming into place is Maddie’s ABA therapy. When we tried to resume those services here in Raleigh, it was denied by our insurance. Tricare, in its infinite wisdom, decided ABA is only medically necessary for children with autism spectrum diagnoses. So they encouraged me to try to get Maddie a diagnosis. I am extremely pleased with our insurance most of the time but this is one of those less than rational policy decisions that irks me. So in the interest of getting Maddie the services she needs, we’ve added a new diagnosis to her list: PDD- NOS, pervasive developmental delay – not otherwise specified. So now we’ve got that. Which means we can get her ABA therapy reauthorized. And that it should be easier to justify placement in the autism class in Wake county.

So it’s been busy. And I really hope all the preparation begins to pay off soon. Because right now she’s missing a lot of school and therapy and those are things she really needs.

Thanks again for keeping up with our previous girl. And if you need the fundraising link again, here it is. 

Thanks so much for your support! Sorry for not posting pics but I don’t know how to do that from my phone.

Love to everyone,

Liz, Brandon, and Maddie

Two weeks until the Marine Corps Marathon!

It’s getting pretty close to time for my race. I ran 22 miles last Sunday, my last “long” run. I ran 12 miles today and I’ll run a quick 10 miles next weekend…..then the Marathon. I feel ready, though I honestly can’t believe I’m saying that. A few months ago, I constantly told myself and others that I had no interest in running a marathon. That half marathons were plenty. That I didn’t NEED to run a marathon. So what changed?

Nothing really. I still don’t really WANT to run it. But I wanted to do something outside my comfort zone and dedicate it to my precious Maddie. I wanted to raise funds and awareness for epilepsy.

And while I’ve done a pretty decent job of training for the actual running of the marathon, I’ve done a pretty terrible job of fundraising and raising awareness. I’ve done very little to publicize what I’m doing and so it’s all on me. I haven’t really asked for help either, though I recognized awhile back I needed it. Thank goodness for my amazing friends in my running group from Camp Lejeune, the Stroller Warriors, or I’d really have accomplished very little toward my goals.

I guess what I’m trying to say here is that my lack of updates does not reflect how passionately I feel about this cause. If I could invite everyone I know into my home for an hour, you would see our struggles. You would see how not”ok” Maddie is……but that’s not how I like to represent us in our blog posts or how I want us to sound. But the truth is that everything is a massive struggle for this precious little girl and this move has really sent everything into a tailspin. So my lack of communication does not mean we are just getting along like a normal family, but rather that life is so complicated at this time that I just don’t have the few minutes a week it would take to try to put our current situation into words……

In retrospect, the decision to run a marathon and fundraise while doing so just a few months after relocating was not a great decision. I guess it has been a nice distraction, and so hopefully at least my results on race day show my dedication to this cause.

But the reality is I would not have undertaken something this big during our move if it hadn’t meant EVERYTHING to me. Which it does. And I’ve done a terrible job of communicating that.

There is still time to donate. I greatly appreciate all of you who have already donated and I’m sorry I haven’t had the time to thank everyone personally.

Her Donation Site

Maddie’s battle with epilepsy will be lifelong. At this point we can no longer hope that her seizures simply go away. Please help us to fund research that will make her life more enjoyable. Thanks in advance!

And this time I really will update y’all on everything really soon……there is a lot to talk about!

Love to everyone!

Liz, Brandon and Maddie

I need your help!

I have missed all the deadlines I had set for myself as to when I would actually get going on fundraising for the marathon. It’s far too late at this point to do t-shirt sales in time for the upcoming race. It is quite clear to me now why it is that I haven’t done any real fundraising since when Maddie was almost two and only battling cancer……I am just too busy. So that’s where you come in……if you’d like to help us raise money for epilepsy research, please do! Share this post or the link below with anyone else who might be interested in helping too!

Click here to go to our fundraising site.

Tomorrow I will be running 20 miles as part of my training and I will do so again just a week later. I have already run one 18 miler during marathon training. Finally, on October 28th, I will run the Marine Corps Marathon in Washington DC in honor of my beautiful little girl. This training has been hard. But it is not nearly as hard as watching my amazing daughter suffer through hundreds of seizures daily. It has been really helpful during my long training runs to be able to draw strength from her, and our experiences over the last almost 5 years. But I am getting to the point now where I am really ready to run the race and be done with all of the hard training. I love running, but following a grueling training plan takes a lot of the fun out of it for me. But when the race is over, Maddie will still have seizures, and we will still be struggling to find ways to control them and to try to help her learn and develop. Which is why it is so important to me that I help raise funds which could contribute to the next big innovative treatment for epilepsy.

I made our fundraising goal $10,000 because that is what we raised for CureSearch a few years back when we were in the throes of leukemia treatment. I still love that organization and plan to raise funds again for them some day, but as I explained in an earlier post, my primary focus now is fighting the seizures. There is still a chance that with new discoveries that we might be able to heal our precious child. And that is why we need your help! Please spread the word so that we can make a difference in the lives of children who are robbed of their ability to learn and develop by catastrophic epilepsies.

To learn more about Citizens United for Research in Epilepsy, please check out their website. They are funding novel Infantile Spasms research right now.

I will update with more about how things are going for Maddie over the next few weeks and will be reminding y’all about the fundraiser. But please don’t procrastinate (like I do!). If you feel inclined to help, please do so…..we genuinely appreciate it from the bottom of our hearts. And for those of you who have already donated, thank you thank you thank you! I’d run to the end of the earth if I thought it could help our little girl in some way.

Love to everyone,

Liz, Brandon, and Madeline

Oops!

As I sit here in a hospital bed at Duke with Maddie, I realize that I never updated the blog after the last treatment. There was a lot going on and honestly, I kept thinking I’d wait and update when I was sure I knew what was going on. Needless to say, I never got there. But here we athe gin the second day of her second round of high dose steroids. So I guess that means that we felt it was enough of a success to give it another shot.

Looking back, it’s good I didn’t update then. We had a pretty bad hospital experience and I would have had nothing nice to say about it. As for the steroids and their effectiveness controlling the seizures, it’s been interesting……we have had good days and bad. But on average, we’ve seen significant reduction in the number of drop clusters she has daily. She still has them like clockwork upon waking. Lots of them. And they happen anytime she wakes, first thing in her morning or after a nap. But there are less drop clusters happening throughout the day when she is awake. And at this point, that’s enough improvement to give the steroids another shot.

Her biggest seizures, her strong tonics, are reduced too on average. Now she averages 1-2 per day, before it was 3-4 on average. I’d love for that number to get lower as these seizures now last a long time (sometimes greater than a minute) and they wipe her out. She sometimes bites her tongue during these and I’m terribly afraid she’s going to bite the tip off. I’ve tried to get my finger in there a few times to try to spare her tongue only to find out what an awful idea that is since it feels like she’s going to bite off my fingertip. We now carry Diastat with us (a seizure rescue drug) in the case that one of these goes longer than 5 minutes. There are some breathing abnormalities that go along with this type so I’d really really like to see these go away altogether.

Developmentally, we haven’t seen any major improvements yet, but she just seems clearer for more of the day. That may be due to reduction in drops or it could be that the steroids are helping to clear up her EEG (making her brain waves less abnormal). I’d like to think it is that, but we won’t know until we have an EEG in 4 weeks.

So we are trying this again and the plan is that we’ll do three days of high dose steroids every four weeks to see if we can get some serious improvement. The side effects that we have seen have been body rash, change in body temp (weird), some behavior changes, damage to her fingernails and some hair falling out. While those don’t sound great, in the scheme of things, they are manageable. Certainly if they all increase after this round, we might change our minds. I think we just feel that if we didn’t do the second pulse at least, we wouldn’t really have given this a fair shot. But we also expect to see more improvement. If we don’t, we’ll have a tough call to make. At this point any improvement is good, but there are some more intangible side effects of this that make it not our favorite treatment.

The intangibles……well, let’s see, for the first week after we got out of the hospital, I was a major stress case. I took her temp 30 times a day and had numerous visits to the Pediatrician. I tested her urine daily and felt at any moment we might have to rush back inpatient if she showed signs of a UTI. The fact that she had been septic after steroids in the past made me nervous…..or more aptly neurotic. I’m always vigilant in watching for signs of infection but this just put me on much higher alert than normal. I think that the studies are correct that parents of children who’ve had cancer have some degree of PTSD after the experience. I think I’m normally pretty controlled (some might disagree, but whatever…..) but this treatment makes me remember really scary times and it’s hard not to be a bit neurotic when you’ve been through all we have with miss Maddie. So it’s a bit of deja vu coupled with a rough hospital experience and talk of new diagnoses; and it took me back to a time when I felt less comfortable with our life. And I don’t want to live that way again….always packed to rush off to the hospital. But I think a lot of it was purely emotional on my part, and so this go around, I’m going to try to be more calm and collected about the whole thing (while still being vigilant).

So I mentioned new diagnoses: we have one definitive one and one we are testing for. After looking at her EEG, it is clear she now definitely has Lennox Gastaut Syndrome. We had suspected this but it is now confirmed. It doesn’t really change much; treatments are basically the same as for Infantile Spasms. But it means we can no longer really hope that she’ll simply grow out of her epilepsy. It was also the first time we had confirmed absence seizures, so she now really has a multitude of types of seizures. Uncool.

The other potential diagnosis is for a type of mitochondrial disease called Kearns Sayre Syndrome. This one I really don’t want. The blood test was mailed off to Baylor and we won’t hear results for another month or so. I’m not good at waiting by the way. And this truly is one we don’t want her to have. Lots of bad things come along with it. You can google it if you want, but I am not spending much time and energy researching it until I hear that it’s a fact. And for now, I’m telling myself that they’re wrong to suspect it. So I’m not freaking out about it as much as I would if I thought it was a perfect fit for her symptoms. At some point, I just have to say, enough is enough…..nothing else new to treat, please. But, it is what it is. If she has it, then frankly, she has it and she’s had it and it hasn’t resulted in all the possible symptoms yet. And maybe it wouldn’t ever, because our kiddo definitely knows how to be unique.

That’s why it has taken me a bit to digest that hospital stay. I hoped to update once we had results of her second piece of EEG done while we were at Duke last time, which could have already shown improvement. But our new Neurologist has not returned a single phone call since we were there. Not one. So I still don’t have that result. So I’m not highly impressed with his communication skills at all. If that isn’t remedied soon, we will not be Duke patients much longer. We could certainly continue this treatment with our old Neuro at UNC. I hope it doesn’t come to that, since our drive to Duke is easier…..but I can’t handle doctors who think they are above having to communicate with their patients.

So right now we are flushing dose three of six infusions of steroids. We’ll drive back to our house soon, then return again this afternoon for her second dose. Then repeat two more doses six hours apart tomorrow, except in between she has an appointment with an opthamalogist here at Duke. That should be fun.

There’s lots more going on to talk about…..marathon training, ongoing, fundraising, and a fun trip we recently took to DC, but that will have to wait for later.

Love to everyone,
Liz, Brandon, and Maddie