Surgery decision...

It is with a heavy heart that I write this...Sophie is not a surgical candidate at this time. I received a message on my answering machine in the 15 minutes I was gone to drop Sophie off at school this morning. I called Brandon on 3-way and then returned the phone call.

The conversation started off good. Ruth (she coordinates every aspect of the surgery and even attends the conferences) said that they all loved the video I sent...especially the part where Sophie was making the tick-tock noise for the clock flashcard. She said they all thought she was just an adorable little girl and was very impressed with her development.

Then she dropped the bad news.

She said that there were about 25 doctors that attended and they had a very long discussion regarding Sophie. They pulled the actual EEG recording and tried to pinpoint exactly where the seizures were originating. The PET scan and MRI were just not enough evidence. The bilateral seizures originating on the EEG was too overwhelming. The video I sent, which I originally thought was going to make her case stronger, had the opposite effect. They were so impressed with her development that they did not want to do anything at this time to have a negative impact on that. Since Sophie appears to show absolutely no preference on using her left or right side of the body, it is quite possible that she is using both her left and right side of the brain...so they do not want to interfere with that.

They want us to come back in six months to do more testing...another 24 hour video EEG, another FDG PET scan and a FMZ PET scan. They say it is quite possible her seizures will lateralize (meaning that the seizures will originate from only one side of the brain). I am suppose to keep them updated once a month as to Sophie's seizure status along with her development. I am also suppose to make note if I start seeing her have one-sided seizures and if she starts preferring one side of her body over the other. In the meantime, I am also going to get her a neuropsych evaluation to help determine if she does have a left or right side preference.

I had come to terms with surgery. I truly believed that this was it. That this was the end to Sophie's persistent daily seizures. That she wasn't going to wake up in the middle of the night anymore...screaming and upset because of the seizures. That we were going to see leaps and bounds in her development. That she could quite possibly be...a typical little girl. I dare dreamed of a life without numerous doctor visits, numerous tests, numerous medications, numerous seizures, numerous tears that roll down her face that is not due to typical reasons a little girl might cry. I know this is all still quite a possibility. But I also know that this might not be the path that God has laid out before her and that I must accept that...as hard as that may be. That He may have other...greater...things planned for her. But for now...my heart is broken. But I will put it back together and move on with the wonderful life that I do have. I am so thankful and grateful for the happiness in my life. Sophie is truly happy. She is a wonderful, beautiful, precious little girl who continues to amaze me.

Best of Sophie

Here is the unedited edited version* of the video I sent to Dr. Chugani for him to present during the surgical conference.

Sophie will be one of five cases that will be discussed during the surgical conference on Monday. There are anywhere from fifteen to twenty doctors that will be present during the conference. Including Dr. Chugani, Dr. Asano (pediatric neurologist who would be performing the grid surgery), Dr. Sood (neurosurgeon who would be performing the resection) along with several other neurologist, fellows, and researchers. All of the testing performed (PET scans, MRIs and EEGs) will be presented and reviewed by the doctors for them to come up with their own recommendation. A letter will then be typed stating everything that was discussed, any further testing that needs to be done and what the consensus was. I will then receive a phone call no later than Wednesday evening with the results.

In the meantime, I am literally sick to my stomach thinking about it. There are so many moments in the day where I just want to throw up. I am so afraid. Not of the surgery but what the consensus will be. I think this surgery will be a miracle for Sophie. I never thought it would come to this. The first round of ACTH was suppose to be our miracle. But it wasn't and here we are. Praying to God that surgery is the path that lies before Sophie....that surgery will be her miracle.

I hope you enjoy the video. You will witness first hand how happy and how far Sophie has come. It is truly amazing that she has been able to do all that she has done despite having so many seizures a day.

* The actual one I sent Dr. Chugani was only 2 minutes long compared to this one that is almost 4 minutes long.

Downloading video...

I need to put together a 30 to 60 second clip of Sophie at her best to send to Dr. Chugani. What software do you use to download the video to your computer? Also, what software do you use to burn the clip to a DVD? Or is it possible to send as an attachment on an e-mail?

Please leave me a comment if you have any knowledge on how to do this.

AMT PET scan results...

I e-mailed Dr. Chugani with the following:

...I was wondering if you had a chance to review the AMT PET results.


He responded with the following:

...Yes, the scan did not show any areas of increased uptake, and was therefore not helpful. It happens, HC


Don't ask me what this means. I'm confused. Does this mean it was completely normal or just no abnormalities in any new areas??? I e-mailed him back so we will see. Nonetheless, my heart is still pounding. When I saw his e-mail pop up, I was almost too scared to open it. Either way, I think this is good news. Actually, I know it is good news. But I still would like to know what it means.

And the results are...

We are still waiting. But we are one step closer. We met with Dr. Chugani on Tuesday morning before the AMT PET scan. He had the results of the MRI....

"...Slight asymmetry noted in the left frontal and parietal lobes which is smaller than right with associated blurring of the gray-white matter interface in the left frontal lobe may represent underlying cortical dysplasia..."

This gives him one more piece of evidence that the brain abnormalities are only on the left side. The PET scan results from last month showed abnormalities in the left parietal, temporal and occipital lobes. I hate that it is showing abnormalities in a new area of the left hemisphere BUT at least it is still the LEFT hemisphere.

With this new evidence, Dr. Chugani is GOING TO PRESENT SOPHIE'S CASE TO THE SURGICAL COMMITTEE on October 27th as long as the AMT PET scan does not show any abnormalities on the right hemisphere. Surgery is tentatively scheduled to begin on November 21st.

Back in Detroit...

We are back in Detroit for the MRI and AMT PET scan. We had about an hour delay at the airport and checked in to the Ronald McDonald House last night at around 7pm. Sophie was her usual self on the plane. Loud and obnoxious (continually kicking and pushing on the seat in front of her). She is strong. She locks those knees and it is hard to hold her legs down. But about fifteen minutes after takeoff, she was fast asleep. Then thirty minutes prior to landing, the pilot comes on over the loudspeaker and wakes her up. Same scenario every time.

The room we are staying in is rather nice. Newly remodeled with a sleep number bed. Though, we haven't quite figured out how to use it yet. Sophie had an absolutely horrible night. She woke up numerous times. At one point, her seizures were so bad that after each seizure she would scream out at the top of her lungs...like she was in horrible pain. Tears were streaming down her face. Her body kept jerking. It was heartbreaking. Surgery could stop this. I want this so bad like nothing else I have ever wanted before. I pray to God that seizure freedom is in the path that lays before Sophie. That surgery will take us down that path.

"But in the end who truly knows the path these children will forge. No one. Well, maybe One person. But us, their parents, all we know is that we love our children. Regardless. We face what ever comes our way, their way and we hit it head on. We pledge to them unconditional love and the promise to not abandon them. To encourage them to be the best they can be. To let them know the world is theirs for the taking as long as they go after it with patience, kindness, gratitude and love for their fellow man and God." ...by Heather Needham.

So now I am sitting in our room. Sophie is sleeping peacefully next to me. The MRI was this morning and everything went well. They left the IV in her hand so that she wouldn't have to get repoked tomorrow. Well, actually, she will still get poked tomorrow. She has to have 2 IVs for the PET scan. One IV to inject the radioactive tracer AMT and sedation. And one IV to draw blood at periodic intervals to check how her body is metabolizing the tracer.

So, hopefully, Sophie will sleep soundly for the next few hours and wake up happy. She definitely needs the rest.

Happy 3rd Birthday!!!

Yesterday was Sophie's 3rd birthday!!! Wow...I cannot believe she is already 3!!!

Flashback 3 years ago...

It was Monday night, October 10, 2006. Brandon was sitting on the couch watching Monday night football. I was getting some things done around the house. We had just closed on our house 11 days prior. Sophie was already 3 days past due. I started getting an odd feeling in my tummy. I didn't think much of it. I had no signs of labor prior to this. Then the feeling started to get a bit stronger. So I sat on the couch next to Brandon. The feeling was now coming and going in regular intervals. This was it. I knew it. I was in labor. I was SO EXCITED. Brandon timed them...they were about 5 minutes apart but very mild. So I showered and finished packing my bag. We left for the hospital around midnight. By this time, the contractions were getting to be a bit painful. But it didn't matter. I was too happy. Already in love with my little girl who was getting ready to enter the world. I couldn't wait to meet her. I couldn't stop smiling.

I was admitted into the hospital and by 2am I had my epidural. Oh, how wonderful that epidural felt. We both fell asleep until about 6:30am. By this time, I knew people were waking up. So we started with the phone calls. At 1:13pm on October 11, 2006, Sophie was born. Labor was easy. I now knew why women could do this over again.

Thinking back upon that time brings so much joy to my heart. The excitement. The awe. Getting to hold her for the very first time. I will never forget that moment. I could relive that moment a million times over. She was my perfect little baby girl.

We named her Charlotte Sophia Coleman. Charlotte in honor of her late paternal grandfather Charlie. My actual due date was October 7th...Charlie's birthday...what are the odds??? Charlie was an absolutely wonderful and very involved father. Brandon was very close to him and is like him in many ways. I believe Charlie is Sophie's angel...watching over her...giving her the drive and determination to keep on going...to fight through every seizure...to not let it hold her back...as he fought through cancer to watch his boys grow up. We miss him ever so dearly.

Happy 3rd Birthday, Sophie!!! I love you more than words could ever describe.

No more AEDs!!!

Can you believe it?!?! Sophie is currently NOT taking any anti-epileptic drugs!!! We have weaned her off Clobazam. It has been almost two and a half years since Sophie has been drug-free!!! We still have her vitamin regimen (multi-vitamin, omegas, pyriodxal 5' phosphate and melatonin). She has had a few bad nights and a few bad mornings due to withdrawal seizures but is almost back on track to her pre-wean days. Clobazam is a benzo and a very addictive drug so it is normal to have withdrawal seizures while weaning it. But we are done. WOOHOO!!!

But I feel lost. Where do we go from here? Sophie's seizure freedom (short of a miracle) is hinging on brain surgery. BRAIN SURGERY. Something we will most likely know in less than two weeks. We leave for Detroit in 7 days. I am scared. Scared out of my mind. Sick to my stomach. It is so emotional. If I knew she was a surgical candidate, maybe I would feel more at peace. But her case is not that clear. Right now it is only a possibility. UGH!!! If not brain surgery, then what??? Where do we go from here. I am trying not to think about it. But I have to. Once you have tried all front line treatments and FAILED, then your mind has to go there. You are constantly thinking what next. You don't have the luxury to fail a treatment and then start thinking about the next option. Precious moments would waste away when you could be trying something different to stop the seizures. Sophie is having seizures EVERY SINGLE DAY.

It's crazy. Two years ago when we had our first visit with Dr. Chugani, I had mixed feelings about brain surgery. I couldn't imagine Sophie having to go through that. I didn't even know that if she turned out to be a surgical candidate that I wanted to go there. Once you take away part of your brain, you are never getting it back. There are no brain transplants.

I just want to curl up in a ball and blink away these next 2 weeks. Wave my magic wand and have all the answers before me. Of course, all the right answers.

Apple picking...

What a gorgeous day it was for apple picking (last Saturday). And so much to do...carnival type rides, pig races, shooting pumpkins through a cannon, pony and camel rides, a big tunnel slide and much more. That by the time we got off the wagon to go pick apples, Sophie was fast asleep. It was a Weekend at Bernie's-esque type of moment. I propped Sophie's head up for the photo op. And I even hand over hand had her pick an apple. Which, by the way, is the whole reason we went there in the first place. She slept through the entire apple picking, the wagon ride back and all the way home.

Staggering statistics...

Reposted from Marissa's Bunny blog. Marissa is a baby girl who was diagnosed with Infantile Spasms on February 15th of 2008.

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Stand warned, there’s mathematics and drama ahead. Marissa’s fine, though.

• There are approximately 305,297,000 people in the USA

14.02 children are born (and survive three months) per 1000 people in the USA every year.

= 4,280,000 babies will be born and survive to three months old

Infantile spasms prevalences in research are variable and depend on which source you refer to. I’m going to estimate conservatively and assume a 1:1 male to female ratio, and use 1:4000 for males, and 1:6000 for females, averaging out to 1:5000 births afflicted by infantile spasms. The ratio is actually 1.05 to 1 male to female, so the actual number of IS kids is a bit higher.

So, with 4.28 million babies and a 1:5000 infantile spasms affliction rate:

• 856 kids a year are diagnosed with infantile spasms.

Infantile spasms resolves itself into something else at approximately 2 and a half years of age. Following that logic:

• 2,140 sufferers of infantile spasms currently less than 2.5 years old.

Infantile spasms is fatal in 1 in 20 of these kids before age 3, not due to accident. That makes 42 kids a year. ACTH treatment mortality ranges depending on the literature between 1:20 and 1:30. For the sake of argument, we’ll say 1:30, and that will account for both kids that go on multiple courses of ACTH and kids that never do. That’s still an additional 29 kids a year.

• 42+29 = 71 kids die a year from infantile spasm related causes

Removing all mortality statistics from IS kids, that’s 786 kids that survive to age 3. Accidents from drop seizures following IS resolution claim some more before adulthood at age 18. The numbers on accidents are fairly staggering depending on your source, but I’ll call it 1:20 again, for the sake of conservatism - this number goes very high in some studies. That’s another 40 kids before age 18. 746 kids survive to age 18. Overall mortality before age 18 is then about 12%- one in eight.

One more time, and in bold. One in Eight.

Look around your town, your supermarket, your place of work. Would you notice one in eight people gone? In what world is a 1 in 8 mortality rate un-noticeable or inconsequential? How many of these kids can be saved with better research, quicker or more accurate diagnoses, more community awareness, or a better support mechanism? I’m sure it’s not all of them, but given the current state of research on IS, a small improvement would make a huge difference.

IS kids have had one voice in the past- Danielle Foltz talked to the Joint Economic Committee in July about the price of rare disease drugs. Penny-arcade.com helped me reach over 60,000 more people, but it’s still not enough. I’m not Superman. I can’t sweep across the country bearing a red cape and talk personally to the parents of all 2,140 kids with infantile spasms, I can’t even catch the new diagnoses. It’s asking a lot of the parents of IS kids to be a public voice for their children individually.

Even with everything else going on in our lives, I’ve started the wheels in motion for a foundation for promoting awareness and providing support to IS parents. This is going to take time and money, so be patient with us. A week or so ago, I spoke with Mike Bartenhagen about this (Broc’s Dad), and we’re both on board with this idea. As a group, we’re stronger and louder than we’d ever be individually.

If you want to help, please contact us. If you’re a parent of an IS kid, and feel you can offer sympathy, support, or advice to other IS parents in the future, especially the ones with new diagnoses, click here and let me know. Financial help is always welcome- you can click here or just donate through the front page. If you want to get attention from the internet at large, you can always Digg Marissa’s Bunny. These are the early, fragile days of any new foundation-to-be, and any and all help is welcome.

Update on Jackson...

As I read the update on Jackson, my heart broke into pieces for this little boy and his family. He is having a difficult time with the surgery thus far and is in a lot of pain. How heartbreaking it is to see your child in pain. To be so helpless. Please pray for Jackson and his family. Pray for the surgeons that will be operating on him tomorrow. Pray for Jackson that his pain will subside and his seizures will stop. Pray for his parents that they may stay strong.