a little of everything

First and foremost: thank you! I was totally overwhelmed by the response to my last blog and I apologize for not having gotten back to everyone! I realized I should have had ALL my ducks in a row with what I needed before I put all that out there. I have been hard at work ever since trying to figure out what I need and how to best go about all of this.

On that note, along with other epilepsy parents, we’ve created a group called Hope for Children with Epilepsy in North Carolina.photo

You can follow what we are doing on Facebook at https://www.facebook.com/Hope4KidsNC

We are following the lead of a group in Utah who is pushing for the same thing, to legalize the import of high CBD/low THC Cannabis oil. One thing that you can do to help us accomplish our goal is to write to your legislators. Email is ok, but actual letters sent via snail mail are what they pay most attention to. Its especially wonderful if you actually sign it by hand and use your own words rather than any template I create for you.

To find your NC legislators, click here and enter your address. It would be great if you sent letters to both your NC Senator and Representative. Thanks so much in advance!

The points that would be good to include are:

1)  that you support us, either Maddie Gorman and her family, or Hope 4 Children with Epilepsy, in our mission to bring new treatment options to children in NC with severe epilepsy

2) that you support the use of High CBD/Low THC Cannabis oil for treating severe epilepsy that doesn’t respond to conventional treatment

3) you could state how our story, or the story of anyone with severe epilepsy, has impacted you

4) let them know that you want them to contact me or Hope 4 Children with Epilepsy to discuss ways to make access to this lifesaving medicine legal for suffering children in NC. They can contact us at hope4childrenwithepilepsync@gmail.com, https://www.facebook.com/Hope4KidsNC or you can share my blog address with them

5) let them know that you will follow up with an email or phone call to their office to discuss the subject

I’m still trying to figure out what all else we’ll need to really get the ball rolling here. If you happen to know any lobbyists or aspiring lobbyists in NC that want to work for free to try to accomplish something amazing, please let me know or pass them my info! Part of the reason that I published that last blog when I did (before I was 100% organized) was that I had filmed a TV interview that was supposed to have aired that night. I wanted to have something up on the blog which explained my position on the off chance that the news piece didn’t fully represent my views. The piece was delayed and is now supposed to be broadcast on November 26th during the 11pm newscast on the CBS station in Greensboro NC. I’ll update y’all if it changes again and I’ll post the link to it once its available online.

 

In Maddie news, there has been a lot going on here as well. I am pleased to say that while she is still having drop seizures, they haven’t increased dramatically. That was my initial fear…..that once they came back, that they’d quickly get back to previous levels. For now they seem to be holding steady. I am truly devastated that they are back. But having seen them so much worse before surgery, I am still grateful to the relative safety that surgery has provided her. And for all of the amazing things she has been doing since that scary day in July.

 

Aside from the re-emergence of her drop seizures, there is another issue that has created a lot of difficulty in our life right now. I mentioned before that she had lost weight and that feeding wasn’t going well. Two weeks ago, we finally got in to see the Feeding Team at UNC. They had lots of advice and tips on ways to get her to eat, but after evaluating her, they felt that for the time being, it was important that most of her meals come from pureed foods. They felt she wasn’t chewing enough and that she was pretty much swallowing food whole. The good news is that she is still swallowing well, but we don’t want her to think its ok just to swallow food without chewing. So we have been pureeing foods ever since. This is a LOT of work. And it makes each meal extremely slow, especially since she is fighting eating at times still. So it takes a lot of preparation for me to be ready with nutritious, but fattening pureed meals to feed her 4 times a day. Especially since she is still gluten and dairy free and we try to eat all organic. So I spend lots of time in the kitchen fixing really strange stuff.

 

The Feeding Team also suggested changing her reflux med. It seems unusual that she would have had changes to her reflux (yes, our precious kiddo has been on high doses of reflux meds since she was two due to all of her chemo and then seizure medications) due to brain surgery. But is IS possible that she is so much more aware since surgery that she notices the pain of the reflux more since surgery. And that the pain might be why she decided to stop wanting to eat. The stopping eating could have then led to weakness chewing which may be why she stopped wanting to do that also. She saw a dentist last week and she is also getting in her 6 year molars right now and that can be very painful, but they didn’t think that would be reason enough to stop chewing entirely. So we started on the new reflux med. Two weeks into it, I can safely say that her eating has been consistently getting worse. She is now waking up many times a night and having trouble going back to sleep. That is a sign of reflux in a child that can’t describe the pain. So just today we changed back to her old medicine to see if we can get back to where she was sleeping through the night. She is eating the purees very well, and is much happier not being asked to chew as much. But part of this process is to teach her to chew again, so that eventually we can get her back eating normal foods. Her weight is just holding steady, but its better than losing.

 
We also saw the neurosurgeon and plastic surgeon at Duke to follow up on the leakage of cerebral spinal fluid from about a month ago. The neurosurgeon seemed to think it was a fluke and that it is unlikely to happen again. She will have a repeat Brain CT scan on Dec 18th to verify that there are no active leaks or fluid build up. Her incision had closed back up by the time we followed up with them and they both felt it looked good and closed this time and that there were no signs of infection. So again, we were told to just watch it, so that is what we are doing!
As always, we are so thankful for all of you wonderful people who follow Maddie’s story. Please continue to keep her in your prayers that her seizures do not increase and that we have NO more surgical complications.
Wishing you all a wonderful Thanksgiving holiday, hopefully surrounded by family or friends!
Love to everyone,
Liz, Brandon, and Maddie

Epilepsy Awareness

We’ve got lots going on, but I’d like to take a break from my normal updates to address something bigger. November is Epilepsy awareness month. It is also Maddie’s birth month. It is usually a month that brings out lots of emotions and reflection in me because it’s hard to get excited about your child’s birthday each year when your child isn’t progressing typically. Each birthday often just highlights the massive gap between where my child is and where she “should” be. Oct 29th was the anniversary of her leukemia diagnosis and so it’s always a bit tough this time of year for that reason as well.

This year as my contribution to epilepsy awareness, I’d like to take you readers through a synopsis of what epilepsy has meant for Maddie and our family. When she was diagnosed officially in Feb of 2009, we thought her seizures were just a temporary side effect of her chemotherapy and that we’d be able to get them controlled with medication of eliminating chemo. How wrong we were.

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Playing just after she turned two, a few days before the seizures began

She had been on her first anti-epileptic drug (AED), Keppra, since we first started seeing seizure-like behaviors. It did nothing but disrupt her sleep and make her behavior terrible. The seizures only got worse. After the official Infantile Spasms diagnosis, her first treatment was high dose prednisone, a steroid. This helped to reduce the seizures but stopped her from sleeping entirely. It also made her scream or cry pretty much the entire time she was awake. I would put her in the car and drive her around the 485 beltway in Charlotte during the wee hours of the morning in an attempt to calm her. That was the only thing that kept her from screaming. Well, that and breastfeeding. I’d guess that she was feeding 8 hours per day at least. And in between would eat an entire bag of Five Guys French fries by herself. She gained almost three pounds in one month’s time. It reduced her seizures a little, but because they were not gone completely and the known side effect of psychosis was becoming problematic, we began a long slow wean, during which we started her next AED – Vigabatrin. We actually saw an exciting 72 hours without seizures right as we started this drug and that led us to raise her Prednisone again in hopes that the combo would stop the seizures for good.

Instead, Maddie ended up in the PICU with life threatening sepsis. One side effect of steroids is that they mask the signs of infection. So by the time she popped a fever, the infection was rampant in her blood. We certainly knew steroids were risky in a child being treated for leukemia because she was already immuno-compromised. But with the type of catastrophic epilepsy she has, they felt it was important to treat it aggressively as soon as she was diagnosed.

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In the PICU when we finally got her off the ventilator and breathing on her own

Maddie almost died that day. And it took her a long time to get back the personality and spunk she had before that PICU stay. When she was healed, we finished the wean of steroids. Vigabatrin alone did nothing for her seizures. She stopped sleeping well during steroids, and it only got worse with the Vigabatrin. About that time, we began to see the emergence of a new type of seizure in her. This meant that despite our efforts, her epilepsy was actually changing for the worse.

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Precious as always, but sporting a little steroid weight

The next two drugs we tried were Clonazepam and Topamax. Clonazepam slows everything down, most importantly the brain. It did reduce seizures, but only when we had it at such high levels that she basically slept all day. So we pulled back to a low dose on it and moved onto the next. Topamax made her lose her appetite completely. I guess we were lucky she had some weight to lose from the steroid trial. It did not improve seizure control.

After failing those drugs, it was decided that she should re-try high dose steroids, but this time we would try ACTH, an injected steroid. So for 7 weeks, I shoved a syringe into her little thigh muscles myself to deliver this powerful treatment for her epilepsy. It reduced seizures enough that we escalated to the VERY max dose, but even then, we never got anything really resembling seizure control. It caused her to gain five pounds, not ever sleep more than three hours at a time, lose the ability to walk because of muscle atrophy combined with the weight gain and have extreme behavioral and emotional issues.  

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This is what high dose steroids do to our girl

After failing this drug, we flew to Detroit for the first time to consult the Infantile Spasms guru, Dr Harry Chugani. Maddie was found not to be a candidate for any type of epilepsy surgery after two PET scans. So we returned home with plans to try one more drug and then a less conventional treatment.

The next drug she tried, Zonegran, actually helped reduce the amount of seizures in each cluster. Zonegran  is one of the drugs we look back on as having been good for her – but it affected her cognitively, she seemed to have trouble remembering and using words, she had night terrors and the appetite issues persisted. We hit her max dose on it and were nowhere near having good control of her seizures and so we moved onto her next treatment, the Ketogenic diet.

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On a quick trip to Myrtle Beach for the USMC Ball before Brandon left for Afghanistan, she is playful and fun despite seizures and side effects

I had really high hopes for this treatment. It is thought of as one of the more natural ways to treat epilepsy, and by the time we got to it, I was feeling extremely frustrated with the lack of results from AEDs and all of the side effects she had to endure during each med’s titration and wean. At this time, she was still on Keppra, Clonazepam and Zonegran. That’s the trouble with epilepsy and AEDs. You often think you are having some seizure control and are afraid to make changes. Every wean seems to make things worse than before you introduced the drug, so at a certain point, you just keep giving them to your child (following your Neurologist’s advice) because it seems more dangerous to remove them.

Upon starting the diet, we had a few days of increased clarity and energy. But that was the end of her good results. Despite tweaking it and following an extremely strict regimen for 6 months, we never again saw anything good from the diet. She actually lost many of her skills while on the diet. As it was happening, we were constantly reassured that she was just lacking energy and that when we tweaked things to get her energy levels back, she would be the Maddie we knew and loved. That was never the case. When we finally called it quits, she was functioning at below a 9 month level in most cognitive and motor skills. I could leave her on a bed and she did not have the skills or motivation to sit up or roll to get off. She was three.

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Her third birthday “Keto cake”

While she was on the diet, we weaned her Zonegran. It increases the risk for kidney stones while on the diet and there is some evidence that the diet works better without many AEDs. Unfortunately, that only led to more seizures. So when she came off the diet, she was still on Keppra and Clonazepam. The next drug we tried was Lamictal. It comes with a risk of Stevens Johnson syndrome, so we titrated up extremely slowly to be sure she did not get the rash that indicates this dangerous condition. When we got to the target dose of it, seizures had only worsened, so we immediately began weaning it. At some point around this time, we weaned off of Clonazepam and onto Clobazam, a newer benzodiapine which has less sedative effects and supposedly patients do not so quickly need dose increases because of their tendency to cause physical addiction.

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I can walk again!

If you’ve stuck with me this far, thank you! I frankly hate reliving this….but I am putting all of this out there for a reason….

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One of her many EEGs to monitor seizure activity. She is not a fan

The next drug we tried was Banzel. Maddie was extremely blessed to experience 2 months without seizures. It was an amazing time. I remember running my first half marathon during this time and praying and reflecting back on the two years of seizures and thanking God for finally giving my child a chance at a normal life again. That was really the only time during her battle with epilepsy where it really seemed like we might actually be able to beat it.

So while Banzel gave us an incredible two months, it was not without struggles. Every time I increased the dose, she would completely quit talking and walking for a few days. It was obviously very scary to watch, but with each increase, I saw fewer and fewer seizures. It felt like something good might be happening. So we stayed the course. And eventually the result was good.

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Fun exploring at the beach during a time where she wasn’t falling constantly!

But that is one of the hardest things about epilepsy drugs. We, as parents, come to accept that there WILL be some undesirable side effects of every drug we try. We just hope the results outweigh the negatives. And for Banzel, they did. She is actually still on Banzel to this day (three years later) because we are afraid things could be worse once we remove it. But the two seizure free months back in late 2010 were the only good times we got out of it.

When the seizures returned, they came back worse. We quickly escalated doses of Clobazam and Banzel in an attempt to reassert control. We spent close to a year tweaking things trying to get it back. But we never got there.

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This EEG was right after the seizures returned when she was only falling rarely

Her sleep difficulties had led us (during this time) to try prescription sleep meds too, Tizanidine and Chloral Hydrate. Her doctor felt that if we could get control of her sleep problems, maybe we could reduce the seizures, since she was prone to them when tired. Both of these drugs just came with side effects, and neither fixed the underlying sleep issues. She actually experienced severe withdrawal symptoms while weaning off chloral. Eventually, we weaned Keppra and after 2+ years of awful sleep abnormalities, and we finally got decent sleep for a little while. We never really suspected it as the cause, but clearly it had been contributing to her inability to maintain a normal sleep schedule. I also then put my foot down that she would never again be on more than three AEDS at a time. I realize that sounds silly. Now, I think I should have said no more than two…..but at the time we still felt she NEEDED Banzel and Clobazam and we were afraid to see what would happen if we took them away.

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Another trip to Myrtle Beach for the Marine Corps Ball, just before another deployment

The next med we tried was Vimpat. By this time I had grown weary of the constant titrations and weans and how it wreaked havoc on every aspect of her life. We went extremely slow. This drug did not improve her seizures at all, but during this wean, a new, much scarier seizure type emerged.

Her next treatment started once we had moved to Raleigh and when we were near Duke and UNC and could get to a good ER more quickly. Despite having sworn never to use them again, we decided to try high dose steroids once more. So this time, we agreed to have high dose “pulses” of steroids, for three days per month. We started the first course in the hospital so that she could be monitored closely. We didn’t see major improvements, but were encouraged to give it more than once to work. After the second round, we called it quits when there was no measurable improvement.

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EEG monitoring at Duke while starting high dose steroid pulse therapy

By this time, we have run out of “good” drugs to try. There are a few that work well for other epilepsies, but not hers, that we can still try. There are a few others we haven’t tried that are contraindicated in her because of a genetic mutation she has and another because of her history of leukemia. So we decided to re-try a drug that had worked reasonably well for her in the past, Zonegran. After her second dose, Maddie went into her first episode of Non-Convulsive Status Epilepticus, essentially a seizure that doesn’t end. Luckily, Diastat, a benzodiazapine that I have kept on hand for years to use as a seizure rescue drug, stopped the NCSE without us having to go to the ER. That was the end of our second trial of Zonegran.

That is the point when we really began seriously considering surgical options, either the Vagus Nerve Stimulator implant or the Corpus Callosotomy surgery. We flew to Detroit for a second round of testing to make sure she was still not a candidate for any of the better outcome resection surgeries. She was not. After being sedated for the PET scan there, Maddie had her second episode of NCSE. At that point, the thought of trying any new pharmaceutical treatment was extremely scary, given that anything new introduced into her system seems to start episodes of NCSE.

We made the extremely scary decision for Maddie to have the Corpus Callosotomy surgery. As most you know, she had this surgery on July 8th. Her results were outstanding at first and she made immediate progress in many skills for the first time since she was two. It was amazing. But seizures have been gradually creeping back in, and just last week she began having a mild version of her drop seizures again. She is falling from them now, but I can usually catch her, as they are a little slower than they were pre-surgery. She hasn’t really started losing skills yet, but she seems frustrated a lot (possibly because she knows a seizure is coming).  So it is time for us to make a decision about her next treatment.

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Asleep in the PICU at Duke post CC surgery

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Her incision runs almost ear to ear, this pic is taken before all of the complications started with the wound draining

It will be an extract from the cannabis plant. The reason for dragging y’all through that whole history of pharmaceuticals is so you can see that we have not arrived at this decision lightly. She has failed almost all of the conventional treatments available to us and so we have decided to try something else. As you may know, medical cannabis is not legal in the state of North Carolina. I plan to work as hard as possible to convince legislators here that children like Maddie should have access to what has been life-saving medicine for so many other children with intractable epilepsy. I desperately want to be able to stay in our home, with my husband (and Maddie’s dad), near my family, where we have a great routine and a great support system. But we are not willing to wait so long that we allow for her seizures to get back to where they were pre-surgery. It is just too dangerous. So if I am unsuccessful in getting the law changed to allow Charlotte’s Web extract to be imported, Maddie and I will leave Brandon here and move to Colorado where she will have access to this medicine, which has been so successful for many patients like her.

Intractable epilepsy has shattered us in many ways. At this point, with Maddie about to turn seven and functioning under a two year old level, it is virtually impossible that she will ever catch up. But we cannot continue to play the same game, trying drugs that only slow her down even more cognitively. One of the most exciting things being reported by parents of kids who are just starting on Charlotte’s Web is that many seem to be more awake, alert, and interactive no matter the effect it has on their seizures. I am not Pollyanna-ish, I don’t assume this is a miracle drug for every child with severe epilepsy. But the fact that so many children who have failed most of the conventional AEDs are having such success with it makes it something very different than our other options. There is NO single epilepsy treatment that has the success rate that CW is having for kids who have failed the number of meds our kids have on average.

I do understand completely that not everyone will understand this, without the benefit of perspective we have gained due to Maddie’s epilepsy. I hope that you will support us anyway and support my fight to get the import of this extract legalized here. I will not be fighting to legalize medical cannabis as a whole, as that is a much bigger issue, one which cannot really be addressed in NC for awhile because legislation was just rejected unfavorably in April. What I am seeking is for an extract of the plant, which has less THC than the legal level in hemp products (which are legal to import), to be legal for us to import from Colorado (where it is legal to grow and be used medically). Because of the extremely low level of THC in it, it does not produce the “high” that is associated with marijuana use. It is instead high in Cannabidiol, or CBD, which has been shown to have neuroprotectant and possibly even neuroregenerative properties. This high CBD extract has potential to improve quality of life in patients with neurological problems other than epilepsy as well. But it is hard for much research to get done because of all the legal issues surrounding its growth, testing, shipping, financing etc. There is finally a drug being tested in clinical trials that is plant derived and is high in CBD. Unfortunately, we live nowhere near the trial hospitals and Maddie doesn’t meet trial criteria, as I understand them. I am extremely pleased that there is a drug in the pipeline, but we don’t have the 3-5 years it will take to get it FDA approved to waste.

To read more about Charlotte’s Web, read this. If you have time, watch the CNN Special report done by Dr Sanjay Gupta, entitled “Weed”. It is available here. I could cite loads more articles and new research being reported. If you are interested in helping me make this a reality for kids like Maddie in NC, please post your email in comments (it won’t show up unless I approve it) and I’ll email you back to talk about how you can help. You can also email me that way if you just want more information. As an extremely over-protective mom, a Republican and a proud Marine Corps wife, this is not a battle I ever envisioned myself getting involved in. But I would do anything for my child.

At home, recovering from CC surgery

At home, recovering from CC surgery

Love to everyone,

Liz, Brandon, and Maddie

More news

I just wanted to quickly update about how Maddie is doing. Two weeks ago, we ended up in the ER unexpectedly due to swelling under her scalp near her incision from her Corpus Callosotomy surgery in July.   The neurosurgery resident didn’t seem very concerned, but when the ER attending felt it, he wanted her rushed into a CT scan. It was a little unnerving, especially since 3 doses of Versed given via IV weren’t putting her to sleep. To keep her still in the CT scanner, she needed to be asleep. After 3 hours of trying to get her to sleep, they eventually assembled a sedation team and we got the scan.

The results showed that it was leaking cerebral spinal fluid. The good news was that it appeared clean, not infected. And they felt that though it was unusual, it would resolve on its own. We were sent home with guidance to watch her carefully for fever or any other sign of infection and to follow up with Neurosurgery in 2 weeks. So we will see both the neurosurgeon and her plastic surgeon at Duke on Thursday.   She has been doing normally for Maddie since then and the swelling has gone down. Her incision reopened and leaked again just for two days after the swelling appeared. We kept it super clean and I’m hopeful this is the last of the post-surgical complications. I’ll try to report back soon after the doctor appointments.

In other news, her EEG from last month showed lots of improvement. Unfortunately, since then, some of her old drop type seizures have reappeared. She has not been hurt yet, but now we know we are going to have to pursue our next course of treatment sooner rather than later. We do NOT want them to get back to how they were pre-surgery.

While this is devastating, I am trying really hard to keep reminding myself of all the good things that have come out of this surgery. The biggest and best thing is that Maddie is now most of the way potty trained. She actually did it mainly by herself. She just decided she no longer liked going in her diaper in front of people. So we had to leave her alone a few times of day for her to go. And when it was clear how much she was controlling it, we got an adaptive potty (where she is strapped in) and she began using it immediately. She still doesn’t understand the need to stay seated on the potty, but with the seatbelt and padding, it is a safe place for her right now. I sincerely hope the drops don’t progress enough that it is no longer safe for her to continue with this great new big girl activity.

November is epilepsy awareness month. I’m working on a long post talking about Maddie’s battle with epilepsy and I hope (when I post it) that you’ll share it with others. I sometimes still can’t believe how much epilepsy has turned Maddie’s life upside down. Most people do not know how serious epilepsy can be.

Love to you all, Liz, Brandon, and Maddie

Big day tomorrow

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It’s been almost three months since her surgery! Time is just flying by right now.

Most importantly, we’d love prayers that things go smoothly tomorrow. She is going to be sedated so that we can hook her up for her post-surgery EEG. This is where we’ll find out how her brainwaves and seizure activity look now. They attach loads of electrodes to her scalp, which unfortunately is just not something she’ll tolerate while awake anymore. She will wear the electrodes and have to carry around a backpack recorder. We will bring her home with this set-up and it will record her brain activity for 48 hours before we return the equipment to Duke.

Before surgery, she was much more out of it. Though she didn’t like the EEG hook up, she’d often just go to sleep during it as a way to get out of something that upset her. Not so anymore. She’s got bruises on her legs right now from her pediatrician trying to hold her still to look in her ears this week. She is extremely uncomfortable now during anything medical. I attribute it almost entirely to increased awareness. And though it’s something we have to work on so that the many doctor appointments on her calendar won’t be so stressful for her, for right now, we are just trying to make things a bit easier.

While she’s sedated tomorrow we’ll also be drawing some blood to check a few things. Though most of the post-surgery healing has been fairly easy, we’ve had some serious difficulties lately with feeding and her weight. She had lost four pounds since surgery. At just 29 pounds at almost age 7, it was suggested that we might need a feeding tube to keep her healthy, since feeding her orally was not. I’ve been working tirelessly since then to pack on the pounds and we are finally starting to see some movement in the correct direction.

Over the last month, she completely boycotted food for one week, boycotted liquids for longer, but with lots of creative methods we eventually got her back eating a drinking. It’s been crazy, but right now what we are doing seems to be working (albeit slowly) so I just hope it continues. I am having to purée or mash most of her food (though she still eats what we eat) and feed her with a spoon. She no longer self-feeds anything and she refuses to chew anything crunchy. She prefers spicy to bland and at times has consisted on a diet almost entirely made up of Whole Foods guacamole. But I think things are improving so we’re just going to keep at it until I get her back to a weight where her doctors feel comfortable and hope we can avoid any more mention of a feeding tube.

There is so much more to write about but I’ll write a longer update once I have the EEG results. She’s still doing really well seizure-wise since the surgery. I am thrilled to say that she has not had a single seizure that would cause her to be in danger physically since surgery. I am so unbelievably thankful to God. We also feel enormous gratitude to Dr Grant and all of you lovely people who have prayed for Maddie.

She does still have activity that I’m fairly certain is seizure activity, but it doesn’t cause her to fall or hurt herself. And it doesn’t make her cry or seem in pain. So we’ll see what the EEG says about it…..and what the doctors think. The amount of improvement we’ve seen in her seizures truly exceeds even my greatest expectations for the surgery. But now that things are going SO well in that regard, it’s hard not to hope and wish for complete control. Especially since for the first time in so may years it actually seems attainable.

There’s much more to discuss but for now I need to get ready for tomorrow! As usual, I’m leaving out most of the bad stuff and focusing on the good. Life has been really challenging since surgery because there have been so many changes in such a short time. But every time I start to type an update, I realize just how amazing the big picture stuff is right now and hate to waste time complaining about the little stuff. Sometime though, I hope to get it all down, if only for my own sake so that I don’t forget.

Thanks for all of your prayers and support!

Love to everyone,
Liz, Brandon, and Maddie

 

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News news and more news

It’s amazing how quickly time is passing now! We are mostly back in a routine. We’ve re-started all her therapies and will re-start school soon and life is just plain busy.

So much has changed since the last update……going to try to keep this short and sweet so I can get in a workout once I sneak out of Maddie’s bed.

Seizures are barely noticeable, if at all during the day. If anything, they’ve improved since the last update and I’m truly not sure if what I’m seeing is seizure activity or just strange movements when excited. We’ll get an EEG fairly soon so then we will know. She still has seizures as she falls asleep on me every night. They are also mild, milder than they were a few weeks ago too.

She is no longer having all the crazy mood swings. She’s her normal happy Maddie with the exception of a few little pinches here and there and some whining when she isn’t getting what she wants. But that’s improving quickly too.

She’s babbling up a storm. Copying tons of what I say, linking sounds together. Much more than ever before. The words aren’t particularly clear…..but that may also be because Maddie also just lost her first two teeth. The first was a couple of weeks ago and the second was tonight. She has been bothered by it being loose and her tongue was constantly playing with that area. So I think the articulation will come, but she has to get used to the new big hole in her bottom teeth first.

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We have a few issues still though. Unfortunately her incision has never really healed up the way we hoped. One section had a large scab that just wasn’t going away. So after exchanging emails last week with her surgeon, it was decided that we needed to see a plastic surgeon to clean it up. It actually started having some fresh drainage out of it over the weekend while we were at the beach, so she’s on another course of antibiotics now to help dry it back up.

We saw the plastic surgeon at Duke today and he feels it will heal faster and better if we debride it. The regrowth of her hair into the affected area and the drainage that has reoccurred is causing it to act like a chronic wound that just won’t heal. It’s not infected and is very clean, but the large scab isn’t going anywhere fast unless they manually remove it. So next Friday Maddie will have that done under sedation at Duke, hopefully (if all goes well) as an outpatient procedure.

It’s annoying, but not that serious. And in the scheme of things, it’s an extremely minor secondary issue from the original surgery. So we’ll take care of it and hope that with the intense wound management regimen I’ll have to follow for a few days that it closes up nicely and then we can put it in the rear view mirror.

She’s also lost almost three pounds since surgery. She is eating, but not like before surgery. And she won’t feed herself at all anymore. So that is a work in progress for sure. She was thin to begin with and at 30 lbs at age 6 and a half, we need to rectify this quickly. Her size 2 bathing suit bottom wouldn’t stay up at the beach last weekend.

But that’s really all the hard stuff. There is a lot more great news. At the beach, Maddie could control her own body temperature. For years, we’d had to yank her out of the water if she started to get cold (which happened in 90 degree weather even when she was wet) and wrap her in towels and put on dry long sleeved shirts and long pants to help her get warm again. She often had awful seizures on the beach because of it. She loved the water so much we hated to take it away altogether but we had to be really careful to keep her from getting too cold. And this time we didn’t see any sign of that. She got a bit chilled once but it was legitimately chilly with the wind. And we saw no seizures out there. It us truly amazing what the brain and seizures can do. That type of dysfunction of temperature regulation is called autonomic dysfunction. It’s usually a symptom of underlying neurological conditions. But it seems that this CC surgery, by so greatly reducing the seizures, may have stopped it. Which is pretty amazing.

There are other great things: she’s back sleeping in her bed! I sometimes sleep with her, but hey, I get some time to myself at night now. She can catch a ball. Even while standing! She can run!

So life is good.

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Love to everyone,
Liz, Brandon, and Maddie

And I don’t mean to add this as an afterthought, but it doesn’t really “fit” as part of my update…..There has been a lot of press lately for a new treatment for intractable epilepsies. Many of you loyal readers have emailed me about it and for that, I thank you! It is certainly not something I would have thought I would have ever considered for my child, but after the evidence that I have seen and read lately from other families similar to mine, I can now say with certainty that medicinal marijuana looks to be a VERY promising treatment for many of the difficult to treat epilepsies of childhood. It is obviously not legal in the state of North Carolina and, as such, it is not an option for Maddie. While we do not need it right now, there are many children in our state right now who deserve to have it as an option for them without their families having to up and move themselves across the country. I plan to begin advocating for the legalization of medical cannabis in NC for children with medicinally intractable epilepsies. Yes, this will be an uphill battle. But it is a battle worth fighting if it helps children like Maddie. Not everyone can have the surgery that Maddie just had, and many do not have such positive results.

If you would like to see more about it, please watch the CNN documentary “Weed” featuring Dr Sanjay Gupta’s research into medicinal marijuana over the last year.

You can view it by clicking here.  It is truly eye opening.

Progress

I think it’s time for an update. Last week was mostly uneventful after her 2 Week Post-Op checkup Monday at Duke. Her surgeon got to see the incision for the first time since we were inpatient and he agreed with the ER’s assessment that it looked good enough not to need to go back in to clean it up. He wanted us to finish her 5 day course of antibiotics and just keep it clean and see what happened from there. 

 
Thankfully it is looking better now. There is still a scab where the previous leakage had occurred but it looks like its healing everywhere now. As it has dried up, she has seemed to be less bothered by it and isn’t paying quite as much attention to it. She is fast and strong so it’s tough to keep her from messing with it if she tries. 
 
Last week was difficult as we began to see the re-emergence of seizures. They are not nearly as bad as any of her seizure types before. But of course, we’d have loved for them to stop altogether. This was not a surgery that we expected to cure her of her epilepsy, so we always thought they’d come back at some point. The fact that they are as mild as they are is extremely encouraging. If they stay this way, her quality if life will have been vastly improved by the surgery by reducing her risk of injury during her seizures. Right now they aren’t causing her to fall down at all. We hope and pray it stays that way. 
 
We are slowly getting to see what post-surgery Maddie is like. She is smiley and sweet as always. But some days she’s doing a lot of pinching and hair-pulling. And having a sneaky little grin on when she does it. She does it to herself at times too and we have to work hard to protect her incision when she’s in that mode. It’s definitely a great way to get attention and she’s figured that out. Typically ignoring would work but that’s tough to do when her incision is her target. 
 
Some days (like today) she is extremely whiny and irritable. She will have her good smiley moments, but then be in tears within seconds. Certain transitions set her off…..like the change of a song or scene on Sesame Street. Or the final credits rolling on anything. Or if you change the app or her iPad before she is ready. She can usually quickly recover, but these emotional outbursts are really uncharacteristic for her. She is keeping me on my toes. 
 
She likes the iPad a lot these days and no longer loves her books the way she once did. She also is back to throwing everything (toys, books) but she can direct where she throws stuff pretty well and she’s following directions at times too. 
 
Her verbal skills are re-emerging as well, but we can already see that they are better when she isn’t seizure-y so we really hope that the seizures don’t increase or intensify much. We’d really love to have the opportunity to work on her communication. She has so much language in there, it’s just tough to get out when she’s seizing. She has already shown some interesting improvements in using her language functionally since surgery. A flash card animal app that she really enjoys often freezes up and goes blank when she presses it too quickly. I asked her to say “mama” instead of whining or getting frustrated when it happens. And she did it twice today without me prompting it! She also threw it more than two times when it happened. Luckily we have a virtually indestructible case. 
 
There is so much going on that its really hard to keep up with. The emotional stuff can make the days really challenging even with all the good stuff. As a seizure mom, when she suddenly cries a lot over insignificant stuff, I tend to worry that a big seizure is looming on the horizon. In the past, as her big tonic seizures initially presented, she would have episodes of crying with no clear cause for a period sometimes an hour or more before a “big one” happened. So hopefully it’s all just adjustment stuff for her, meaning that her brain is adjusting to this new way of life with a lot less frequent seizures. During the one brief stint of time without seizures a few years ago, she had some serious emotional and behavioral quirks as the seizures stopped. So I’m hoping that this uneasiness she feels is mostly that and not big scary seizures just around the corner. 
 
She is walking like a little pro now. She tears around our house trying to get to all the “new” things she has found that she likes to label. We’ve lived here just since mid-April, and before surgery, I’d say Maddie knew where her playrooms were and where her bedroom and bathroom were, but beyond that, the house wasn’t really interesting to her. She certainly hasn’t paid much attention to the pictures on the walls or what she could see from individual windows. She still wears her harness because the house is almost all slick new hardwoods and I just still don’t feel confident in her walking or that a drop seizure isn’t lurking. But I hold it loosely and she completely supports herself now as she practically runs from room to room, naming items or people in the photos, asking to be picked up to touch things or see herself in mirrors. 
 
Her behavior is very much like the two months 2.5 years ago where the seizures stopped. It really is neat to see that because it means that when you strip all the seizures away, there is a curious energetic little girl under all these meds that wants to be able to interact with her environment. On the flip side, it also means we really haven’t made many gains in those 2.5 years. But how could she have with seizures all day long? So I am not worried about that. I just hope this period lasts and that we can get her feeling more comfortable emotionally so that she isn’t so frantic. So that we can really make some good progress. 
 
There is something kind of funny about all of this which could become a really great problem to have in the very near future. We just bought this house. It’s huge and beautiful and we mainly did it to try to make the best of a tough few years in Raleigh job-wise for Brandon and because Maddie and I had been so house-bound for so long. I wanted to splurge and really buy a place we could enjoy being “stuck in” all day. Because Brandon is active duty Marine Corps, every home is temporary, and so I just picked something that made sense for us for the next couple of years. It NEVER dawned on me that while we lived here Maddie might be able to walk around independently. We will have one heck of a time child-proofing this place if things progress to that point! Like I said though, that’s a great problem to have. Ha. I laugh at myself on that though. I considered that we’d need all this space to host family who’d come to help around surgery time if we chose that option. It just didn’t really occur to me that the surgery might be as successful as it has been so far. Long may it last. 
 
In the future, updates will likely be more infrequent. I finally let my mom leave a few days ago. It makes things a bit trickier since we still aren’t leaving Maddie alone ever yet. Which meant today I couldn’t shower until the babysitter got here midday. So I get to lounge around in pajamas more. It will hopefully be much easier soon, as I feel like her incision is just days away from being closed enough to leave her alone briefly. If it remains tough for awhile, I’ll ask mom to come back so that I can bathe and cook again. But for now we will keep hoping for improvement everyday as we get used to this new normal. 
 
Love to everyone,
Liz, Brandon, and Maddie

Today

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This is how we feel about being back home and not in the hospital tonight!

 

This was a day that started out in a way we weren’t sure we were really emotionally prepared for again. Surgery is scary. We packed and headed to the hospital knowing we’d do what we had to do. But to be told “all is well, go home, follow up with your Dr tomorrow” was just amazing. Such a relief.

 

And the day just got better and better as it went on. Some of Maddie’s behaviors that we have been worried about were reduced today. And her speech improved. Not back to where it was, but by leaps and bounds over yesterday and the days before. And she has been a little giggle box. Lots of smiling, laughing, giving us kisses.

 

So today we are simply thankful.

Love to everyone,

Liz, Brandon, and Maddie