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

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13 thoughts on “Epilepsy Awareness

  1. Maddie is one lucky little girl to have such an awesome mom and dad….you are right…..parents do not choose this path but once we are on it you NEVER give up. I have an adult (child) who has medical issues and I too will never give up until I see him leading a fairly normal life….When your child is ill it hits you in your “core” so I totally understand you. Your Maddie is so precious…..I will keep you all in my prayers and hope that the “best” is yet to come and Maddie and you will find some way to stop these seizures . All the Best….Another mom

  2. Liz – I have written to the NC Senators & Congressmen asking them to support legalization of the drug you have mentioned. What else can I do? I have followed your journey through all of this; and I have so much respect for you as a person, a mother, and an advocate for Maddie. I am proud to know you. I continue to pray for you, Brandon and Maddie. I think you have my email address – please let me know how I can help.

  3. Thanks Loretta! I will be in touch once I know what folks can do to help us. Right now, I’m trying to determine which lawmakers to talk to to get them to sponsor a bill and if I need to hire a lobbyist. I will get it all figured out soon and will be in touch once I do! Thanks for your unwavering and enthusiastic support! Liz

  4. To my dearest Maddie, I have know you since before you were born. I remember your Mom putting my hand on her tummy to let me feel you kicking, and seeing her smile knowing you were on your way. I remember your sweetheart smile that made me melt every time I saw it. To say I would do anything to see you cured would not come close to what I want for you. Your Mom and Dad are two of the most wonderful people on this planet, they deserve all the accolades that people send their way. I pray every night for you and have since the beginning of your troubled times. Liz, as I have said, there is nothing I wouldn’t do. Please let me know anything I can do.

  5. I will help you however I can. Being a cancer survivor, I have seen the good results that come from this plant even at higher doses. The fact that the drug at lower levels shows signs of rejuvenation really interests me in so many ways. Maddie is a beautiful girl, your girl, and she’s lucky to have you as parents! 😇

  6. What a wonderful mother you are! And how lucky a little girl that Maddie is. I have had epilepsy since I was 16. (They think it was caused by a bike accident I had when I was 9 when I incurred a serious skull fracture). After several variations of medicines, the doctors were able to get quite a bit of control on my seizures with 200 milligrams of Dilantin a day. I am now 54 and consider myself blessed more than one can know. I know the fear that is associated with grand-mal seizures or even just auras. But please know that you can’t imagine how comforting it is to have love ones hold you and talk to you as you struggle to not loose consciousness. And the soft voices and smiles that you see when you first awake are priceless.

    The brain is a very strange organ. Over the years I have discovered many things that cause me to have seizures other than the standard lack of sleep, lack of fat in my diet or imbalance of my meds. Things like walking into a soft blue room or having faces come really close to my face or seeing flashing lights or closing my eyes at church to pray or hearing a particular tone in a voice on a telephone recorder… any of these can turn a good day into a bad quickly.

    Wish I could help you and Maddie. I think that if our NC Senators & Congressmens experienced just one grand mal seizure they would be more likely to introduce whatever drugs were needed to stop this disorder. I’ll help however I can.

    BTW Maddie, you are beautiful and have the eyes of an angel.

    Sandy

  7. Liz, please let us know what action you think we could take that would help to take NC to where Colorado is in legalized cannibis (sp?) for epilepsy. Your Mom sent the video about Colorada and epilepsy recently. It was amazing. If anyone can get some action going, it would be you. You are one strong Momma Bear!
    Brucie Harry

  8. Hello Liz I am very excited to have found your blog and to know that there is another mama here in NC that wants cannabis to be legalized to help our sweet kids as much as I do. I spoke with Representative Kelly Alexander last week who has put forth a bill the past 3 years trying to get it legalized and it has gotten shut down in committees. He is still very interested in pursuing the bill but he said he would not be able to bring another bill to the floor with the same subject matter until 2015. I look forward to chatting with you=)

  9. Hello Liz,
    I just watched your clip on WFMY 2 and can not even imagine what you go through each day. My family will start praying for Maddie to be healed from her health problems. I have no problem with the treatment that you wish to try, it just seems that the obstacles are awful big. I know that you have probably researched many things that might help your daughter, but I couldn’t, not send this message to you if I could. Please go to Youtube and watch videos about seizures and the use of a doTERRA essential oil, FRANKINCENSE. (Amazing doTERRA testimony, seizures healed by doTERRA Frankincense-5min.) (doTERRA Seizure video, doTERRA essential oils,Lisa Kramer’s Testimony- 6 min) These are only 2 of many videos and stories of people that have had miraculous success with doTERRA essential oils. Another one that gives you a more scientific approach to Frankincense is Dr Hill explains the powerful benefits of Frankincense. There are other oils that may help Maddie as well. The videos are testimonials of people that know how you have felt, I don’t have personal experience with the oils and seizures but they have been amazing with treating my family for other medical issues. You are only talking about a few minutes of your time and a possibility for amazing relief for your family. Please prayerfully consider them as an option.
    Sincerely,
    A Mother
    Michele Pitts
    Burlington, NC

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