Felbatol...

On Monday evening, we started Sophie on Felbatol. This will be the last medication we try before the surgery. Dr. Epi said this was the only other recommendation she had before the surgery. She had mentioned it to us back in March and we discussed it with our local neurologist and he agreed. We had the blood work done and prescription in hand when we received the call about Sophie being presented at the surgical conference. Needless to say, everything got put on hold. Well, Dr. Epi mentioned it to us again last week. She said she has seen success with this drug when everything else has failed. So after e-mailing back and forth a few times with Dr. Chugani, he was on board.

We started off with .5ml on Monday evening. On Tuesday, we increased to .5ml twice a day. Today, we increased to .5ml three times a day. Our max dose will be 2ml three times a day. So far, we have not seen any difference. We are also down to 100mg of Banzel twice a day. We are holding steady at 3ml of Neurontin in the evening.

Another surgical conference Part 2...

Just to clarify... Sophie's case was presented at 2 surgical conferences. One at Children's Hospital of Michigan (CHM) presented by Dr. Chugani and one at St. Louis Children's Hospital (SLCH) presented by two neuros that Sophie has seen there in the past. One of the neuros is actually an epileptologist (a neurologist that specializes in epilepsy) who I will refer to as Dr. Epi. We met Dr. Epi during Sophie's 24 hour video EEG at SLCH last month.

Late yesterday afternoon, I received a phone call from Dr. Epi with the results of the surgical conference at SLCH. Brandon and I had a long discussion with her, in which, she was so incredibly informative on so many levels. To summarize the call, they concluded that Sophie is a surgical candidate and that it would be a case they would take on!!! What a relief!!!

I completely trust Dr. Chugani and the surgical team at CHM but to have another incredible group of doctors agree with their findings...just gives me such an incredible sense of calmness. Calmness that we are doing what is best for Sophie. Still scared out of my mind for her to go through that but at least I know we are making the right decision.

Even though SLCH is only 20 minutes from my house, I cannot imagine having the surgery anywhere but with the surgical team at CHM. Sophie's case is complicated and the surgical team at CHM has the most experience with the type of surgery that Sophie will have. Dr. Epi was even familiar with Dr. Chugani's case load. I sometimes forget that those outside the Infantile Spasms (IS) community may not realize the expertise Dr. Chugani has regarding IS. Families from all over the country...actually all over the world...seek his advice. Click here for his bio.

I will update soon regarding the phone conversation that I had with Dr. Chugani and Dr. Epi.

Another surgical conference Part 1...

Last Wednesday, I thought it was time to fill Sophie's local neuro in on the latest events. I told him everything and he agreed that surgery would give Sophie the best possible outcome at this time. I also explained that I did not think St. Louis Children's Hospital (SLCH)** would be interested in Sophie case. When Sophie was 10 month old, I had took her to the Epilepsy Center at SLCH to get a second opinion. He said he respected the neuro I had met with and that even though SLCH might not want to take on Sophie's case, that neuro might still agree that surgery is the best option for Sophie at this time.

So, I called first thing Thursday morning and his first available appointment was in August. I explained that August would be useless since Sophie is scheduled to have surgery in July. So the receptionist said that she would talk to the doctor and see what he wanted to do. A few hours later, the phone rang and it was him. I was quite surprised. It took 2 months to see this doctor initially, so the last thing I was expecting was a call from him directly. I explained everything and he said that he would present Sophie to their surgical conference that meets every Monday but it would not be next week because they were a little back logged with presenting cases. He wanted to talk with the neuro I had met in the hospital last month while Sophie was getting her EEG because she was most familiar with Sophie's current situation. Less than 30 minutes later, he called back saying they had an opening this Monday (today) and that he and the other neuro would be presenting her case. All I needed to do was drop off the CD with Sophie's latest PET scan and MRI that was done in Detroit. He said that it was a good thing I had the EEG done in St. Louis because they do not rely on other hospital's EEG.

On Friday, I received a call from the neuro I had met in the hospital to get more information regarding Sophie's current situation. She said that I would get a call either Monday or Tuesday with the results from the surgical conference.

I feel so incredibly fortunate to have so many doctors interested in Sophie's case. Though it may put a small doubt in my mind if SLCH believes Sophie is not a surgical candidate, I have to remember that they are conservative and that Sophie is not a typical surgical candidate. But if they do believe she is a surgical candidate...I'll just feel that much more confident. Because even though it is hard to come to terms with brain surgery, I know I have found the best in Dr. Chugani and his team.

**In 2008, U.S. News & World Report recognized St. Louis Children's Neurology/Neurosurgery as 6th-best program in the nation.

My surgery scheduling day...

Now that I have had time to sit back and reflect on the week, I guess I should say that it wasn't a completely horrible day (the day surgery was scheduled)...just difficult.

It was just one of those days. Where nothing seems to go right.

Elsa was up in the middle of the night.

Brandon left early that morning to go out of town for work.

I was scrambling around trying to find time to call early in the morning to get Sophie's surgery scheduled. They have a surgical conference every Monday so I wanted to be the first one to get a hold of Ruth (Dr. Chugani's nurse who schedules the surgery and has an immense amount of knowledge regarding surgery).

I had Sophie to get ready for school and Elsa to get ready for music class.

I got a hold of Ruth before we left but the earliest date she could give us was July 7th (3 days after my due date) so she said she would call the neurosurgeon to try to get something earlier. She would try to call me back before the end of the day.

I was late dropping Sophie off which means instead of having the teachers come get her out of the car, I had to park and walk in with both Sophie and Elsa.

Elsa and I went to music class...a nice break from reality. We then ran a few errands and picked Sophie back up from school.

Sophie was crabby the minute I buckled her into her carseat. Lately, it seems that school has been completely exhausting to her. Her energy level isn't where it use to be.

Back at home, I tried to get Sophie to take a nap since she was having complete meltdowns but Elsa wasn't making it very easy for me. Then Dr. Chugani called in the midst of all of this to go over the list of questions I e-mailed him the night before. Luckily, I was able to get a hold of Brandon on 3-way so he could listen since both girls were screaming, crying and pulling on me in every direction. Dr. Chugani asked if I could hear him because he said he couldn't hear himself talk. So I put the phone on mute. But it was so hard to concentrate. At least he had the list of questions so I didn't have to chime in too often.

As soon as I got of the phone with him, I cuddled in bed with both girls and they fell asleep. As I snuck out of the room, the phone rang. This time it was the neurosurgeon's office. They had an earlier date for surgery!!! May 28th!!! Wonderful news. But wait...May 28th was the grid surgery date and June 4th was the epileptic surgery date. That meant a full 7 days of having the grids on. I was under the impression that it would only be 3 full days. Those additional 4 days would be very difficult. Grid surgery is an invasive procedure. In those 4 additional days, Sophie would be completely awake with grids attached directly to her brain. After a 24 hour video EEG, she is ready to pull the wires off and the wrap off of her head. So now I was very confused. Did she really need them on that long or was it a scheduling conflict? I know she was not the typical surgical case so maybe that is what Dr. Chugani wanted. I was freaking out while I was waiting to hear from Ruth on what really needed to be done. But I tentatively took the date just in case.

I then had to leave with Sophie to take her to her first private speech therapy class. My mom came over to watch Elsa (Thank you Mom). While Sophie was in therapy, Ruth called. She said that 7 days was not necessary but that it was the only time the neurosurgeon had available. So we discussed dates again and we scheduled the 2 part surgery for July 14th and 17th. I was second guessing myself but I just couldn't imagine putting Sophie through anymore than I had to. On the other hand, she could quite possibly be seizure free that many weeks earlier. Ugh!!! Then Ruth called back. She just found out that the neurosurgeon is on vacation the first part of July so the earliest date now is July 21st and 24th.

I called Brandon and he thought that maybe we shouldn't wait. I was so torn. Everyone I talked to said that the time between the 2 surgeries is the most difficult time.

Once we got home from therapy, my mother-in-law and Haley pulled up behind us. I figured I would just let things go for now and think about it later.

Later came too soon. After I dropped Haley off at dance class, I couldn't stop thinking about it. Obsessing about it. Brandon was out of town. Though my mother-in-law was here. She came over everyday after work and stayed the night (THANK YOU so much Debbie...I couldn't have gotten through the week without you!!!).

So the next day, I e-mailed Dr. Chugani. He said...I think it's Ok to wait the 2 months. Ruth will let you know if there is a cancellation, HC.

So now we wait. Planning on July 21st but hoping that if it is not up to God for Sophie to miraculously become seizure free in the meantime that it will be some other child scheduled to have surgery. Ruth asked and we agreed that we would be available at a days notice to head on up to Detroit if there is a cancellation.

Surgery date...

What a horrible ending to a horrible day. I have been reduced to tears so many times. The girls are fine. It's just me. I just don't want to hold it together anymore. But I just wanted to let everyone know that surgery is scheduled for July 21st (grid surgery) and July 24th (epileptic surgery).

Set in stone???

Tomorrow morning I will be calling Dr. Chugani's nurse to schedule the surgery. She was out of the office all last week and will be returning tomorrow morning. She is the one that coordinates the schedule of all the doctors involved. I am scared to make the phone call. It feels too real for me. Surgery has been this concept not a reality. And even though I hoped and prayed that it would be an option for Sophie, I hoped and prayed even harder that her seizures would just stop with medication. Or just spontaneously stop for some unknown reason as they did for 33 days back in December 2007/January 2008.

I was ready the last time we thought she was a surgical candidate. This time, I am scared. So very, VERY, VERY scared.

Our time line is kind of crazy because I am 29 weeks pregnant...due July 4th. That is only 11 weeks away. And I am not suppose to travel after 36 weeks.

Just the facts...

Every time I sat down or thought about sitting down to write a post about our conversation with Dr. Chugani, my head spins. My emotions are all over the place. Just trying to get a cohesive thought down has been nearly impossible. So instead, I am writing this post about the facts...leaving behind the emotions for a moment.

The EEG...

• The EEG is never really convincing.
  
• The left side is worse than the right side but there is independent right side activity.
  
• Her brain is electrically caught up in a storm. Eventually the brain burns out around the age of 4 or 5 years old. Meaning her development will level off and quite possibly regress. Once this happens, the skills are not regained.

The PET scans...

• The PET scan looks much worse on the left.
  
• There is a subtle area of abnormality in the right temporal lobe.

The MRI...

• The MRI shows a blurring in gray-white matter in the left hemisphere.
  
• Nothing is noted in the right hemisphere.

Additional evidence or reasons discussed on why the committee agreed on surgery...

• She is showing preference in her left hand.
  
• Jackson's case (which is similar to Sophie's) has proven to be successful.
• Since she has failed so many medications, this is the best option for her even though she does not have the best scenario for surgery.
  

Exhausted...

It has been a crazy day and night. We just got back from an emergency visit to the pediatric dentist for Sophie. All is okay. I just wanted to let everyone know that Dr. Chugani called today and he thinks surgery is the best option for Sophie. I am emotionally drained at the moment and can barely keep my eyes open so I will post all the details tomorrow. Good night.

I'm freaking out...

There is no other way to put it. I can't process the information I just received. A neurologist that works under Dr. Chugani just called me. She wanted to get a history of Sophie since our last visit in October. THEY ARE GOING TO PRESENT HER TO THE SURGICAL COMMITTEE on Monday!!! What did they see in the EEG??? I asked but she wanted to wait until Tuesday to discuss. I am in shock. This was the last thing I ever expected. I have (or had...not sure how I feel at the moment) given up on all hope that Sophie would ever be a surgical candidate. It just did not sound promising. It still does not sound promising. When the epileptologist reviewed her EEG with me at the hospital, she saw nothing that would point towards Sophie being a surgical candidate. Even though I had the EEG on a CD before I left the hospital, I waited until just this past Monday evening to mail it. I thought there was no point. But I had to send it. That was the whole reason we had the EEG in the first place...because Dr. Chugani had requested it. I am so glad it's Friday. Good Friday. Brandon took off work today. My brother from San Diego is in town visiting. And my sister, her husband and their little boy from Chicago are in town visiting. We have lots of fun things planned for the weekend. A lot to keep me busy. To keep my mind from going there. Because after the disappointment from last time, I don't know if my heart can take it.

Volunteers needed...

When Sophie was first diagnosed with Infantile Spasms, I felt lost and alone. I did not know a single person with a special needs child. I had support from family and friends but not the kind of connection I needed from someone who had been through what I was going through. So when I read this post about a couple starting a non-profit organization called HelpIsHere, I was motivated to help. Because it wasn't until I found the time to navigate through the internet that I finally found a support system...other families going through exactly what I was going through. I did not even know that online world existed. I am not exactly sure what their vision is for this organization, but wouldn't it be wonderful if every doctor and every hospital passed along the name of this organization along with the devastating news that your child's future is not going to be what you envisioned. Because when we left the hospital, we were given an expensive vial of medication and needles and was told to inject this into her leg (ourselves) once a day...our vial of hope that soon disappointed us. Nothing was said of what needed to be done for her hypotonia (low tone) or developmental delays. Through my research on the internet, I found out about Early Intervention (state-based therapy program for children age birth to 3 years) which got her the therapy and orthotics that she needed. Through my research on the internet, I found out about different medications, alternative treatments, alternative therapies and so much more that I was able to discuss with her neurologist. It took time...a lot of hours on the computer...a lot of sleepless nights, but it eventually all came together. But it shouldn't be that hard. To be able to go to one website and get all this information would have been incredible. Though I would have still felt devastated, I would not have felt alone or lost.


Reposted from GwendolynStrong.com

Victoria and I Need Your Help

Victoria and I are starting a non-profit project called HelpIsHere.org. HelpIsHere is an online community driven website that will help those impacted by life-altering illness answer the difficult post-diagnosis question - What now?

In short, the mission of HelpIsHere.org is to help people navigate resources specific to their disease, demographic, and geographic region. NOTHING like this exists, and in our experience the need is enormous.

We are recruiting an online focus group of 20-30 people who have in the past or are currently dealing with life-altering illness - either as a patient, caregiver, family member, friend or professional. The group isn’t limited to SMA, children, or the U.S. -- in fact, the more diverse the group the better because HelpIsHere.org will be aimed at all life-altering illnesses.

This online group will help us fine tune HelpIsHere.org to make sure it is truly a helpful resource.

So, what will your involvement entail? We know your time is limited and valuable, so you can contribute as much or as little as you want. We will pose questions to the group, like - "What do you think of the way the site is organized?” to more integral questions, such as “We are thinking of doing X,Y, and Z. What do you think?”. The questions will all be opinion based on your experience.

If you are interested, please email me at bill@HelpIsHere.org and we'll take it from there. And please forward this to anyone you think may also be willing to help make the post-diagnosis process a little easier.

Thanks so much in advance.

Just in one of those moods...

I haven't posted about Sophie lately because sometimes it is just too hard to write anything positive when I am feeling overwhelmed and sad. And I hate being negative and unappreciative of the things that Sophie can do. Especially when everyone around me points out that I am fortunate that Sophie is doing as well as she is doing. Sophie had a doctor's appointment the other day and I was told that Sophie will never be "normal" but that I should be happy for how great she is doing compared to others with her same diagnose. But sometimes it is hard for me to see. Hard to look past the seizures that she has EVERY SINGLE DAY...ALL DAY LONG. I am tired of it. I am tired of not having any answers. I am tired of none of the treatments that I research and research and research give her any relief. And now I am pregnant. How am I going to be able to divide my time between all my kids and give Sophie the attention she needs. I just feel like the older she gets, the farther and farther she is falling behind. And Elsa just keeps getting so much smarter. I am so happy for Elsa and I love that things come so easily for her but it is hard to watch her do things at 14 months old that Sophie at 42 months old cannot do yet. It is such conflicting emotions. And though her doctors are quick to point out that she is still progressing, they are also quick to point out that they don't know how much longer she is going to continue to do as well as she is doing if we don't get the seizures under control. Except no one has any answers for us. Nothing seems to work. Surgery is not an option. I feel so lost and so helpless. And guilty. Guilty for feeling this way.