Not perfect, but we have HOPE!

Well, after baby Z got his second dose of Sabril, which was yesterday morning, he started crying and screaming, and continued all day long.  Poor little guy.  He was absolutely miserable.

I called in to the neurologist’s office, talked to the nurse, and my neurologist promptly called me back.  She said some people are more sensitive than others, and she had me reduce the dosage and bring him up more slowly.

The good news is that he has hardly had any seizures, and the ones he has had have been very minor!  So, we have HOPE!

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The Sabril is here! The Sabril is here!

I was SO excited last night when the Sabril finally arrived.  It was almost 9 p.m. and dark, and the delivery truck was way down the street trying to read house numbers.  I was literally flicking our front light on and off and even walked out to flag him down.  I’m sure he thought I was a crazy woman, but he was like Santa bringing gifts!

Zane got his first dose (3 ml) last night and another 3 ml this morning.

I hope this works!  I hope this works!  I hope this works!

Always Verify!

I just had this feeling, so I decided to call SHARE (the distributor of Sabril) to check on our order.  Turns out that the doctor left something incomplete on the paperwork that was faxed Thursday, and SHARE faxed it back to them on Friday and never got a response, so they didn’t ship the medication.  After a couple calls back and forth, the lady at SHARE checked with their pharmacist and they decided to go ahead and ship to me.  It turns out if you call on a weekend, they can ship same day, but if it’s a weekday, it’s 2-day.  So, she said if I wanted I could wait till tomorrow (Monday) and it would arrive on Tuesday, or I could order it today (Sunday) and have it tonight (Sunday night).  I didn’t even know same day shipping was possible, so I questioned the cost, thinking it was going to be totally outrageous.  But, she said that it was no additional cost.  ???  Not sure how that can be, but obviously I took that option!  It should be here by 9 tonight.  It’s 8 p.m. now, and I feel like a kid at Christmas.  I just can’t wait!  I’m hoping and praying this will work for my baby Z!  (I’m still terrified if it doesn’t, but I’m trying to stay positive).

Frustration, Hope, Fear and Sadness

I sit here at midnight, trying to get all this off my chest before I can actually go to sleep. Although, at the same time, I feel like I could sleep for days.

It’s just that I’m having this weird culmination of feelings: frustration, hope, fear and sadness. I am frustrated that it took so much to get a proper diagnosis, and that doctors that I am supposed to trust, wouldn’t take the time to listen to me. I know it must be hard to be in a job where you are always dealing with overbearing moms. But, we are the ones that know our kids best. We are with them the most. If I hadn’t been an overbearing mom, if I hadn’t been doing research, if I hadn’t gotten a second opinion, then I don’t know how long we would be continuing down the wrong path with the wrong treatment.

You may not realize it if you looked at me with all the tears running down my face right now, but I *am* hopeful. I am hopeful that the medication (Sabril) will work. But, the statistics aren’t great. There are stories about how wonderful it is when it works. It can truly be a miracle drug. But it seems there are many more stories about when it didn’t work. If it doesn’t work, then there’s only one other medication that is suggested. If that doesn’t work, then we don’t have a lot of options.  Maybe the ketogenic diet, or brain surgery, and I can not stand to think about surgery.  I’m not even sure if this is coming out coherently, since I’m tryint to type through so many tears. I just don’t understand. Why would this happen to any baby, and why did this happen to our sweet baby? You know, in the news, they’re always featuring people who have hardships, and their loved ones always say that they never questioned why, that they just moved on, and dealt with it. I wish I could be one of those people. But, I’m not. I don’t understand. I don’t know why. Why? Why? Why?  I mean, look at this sweet baby.

My Sweet Baby Z

The Sabril has to be special ordered and should arrive at our home early next week. But, I’m TERRIFIED to start giving it to him. Yes, I’m glad he will finally be given the *right* medication for his condition. But, what if it doesn’t work. I just don’t know how I can hold it together. I’m trying to hold it together, for my daughter’s sake, but I feel like I’m failing miserably. My house is a disaster, and my daughter is overdosing on junk food and tv, but I’m doing the best I can. I hope I can hold off visitors, because I’m just not in the mindset to entertain for an hour or a week, and I’m not good at accepting help, and it would just end up being more stressful, and I don’t need any more stress right now. We have been planning a trip to see my husband’s brother and his wife, for next weekend. I do hope that baby Z’s seizures and controlled enough for that. It sounds good to get out of here and have a break from our routine. If the seizures aren’t getting better, then it’s going to be a sad realization that life as we knew it is over. It’s weird to be in the midst of that kind of life-altering change, and see on FB that everyone else is going along in their happy little lives at warp speed, and we’ve slowed down and are taking things day by day, sometimes minute by minute. It’s hard to see your baby seizing. It’s hard to see other people seeing it for the first time. It’s hard to imagine all the things that you had imagined for your little guy that are no longer possibilities. Even if the medication works to control the seizures, did I mention that it can cause loss of peripheral vision, or even blindness? And, I’m not talking in a few cases. The drug’s website says 30%. But, controlling the seizures and stopping any regression is most important.

I guess I just feel like I’m mourning the loss of all the hopes and dreams I had for my little guy. I’m not talking the reach for the stars, become president type dreams. I’m talking the little stuff that most parents take for granted. I want to see him crawl, and walk, and talk, and feed himself. I *want* him to color on the walls and bang on pots and pans. I want my happy, healthy, smiley, giggly baby back. What I wouldn’t give for that.

New Medication: Sabril (vigabatrin)

Well, our new neurologist ordered a new medication for baby Z to fight these spasms. It’s called Sabril (vigabatrin). It’s a very specialized medication, so it can’t be ordered from any pharmacy. It only comes from the company itself, through it’s SHARE program. It should be here within a couple of days. I hope it’s baby Z’s magic drug!

Lucky coincidence…

Isn’t it funny how things can happen at just the right moment?

While we were in the hospital with baby Z, I was able to check my work email via my cell phone, and although I wasn’t really in a frame of mind to work, it was a nice distraction.

I’m not sure if I mentioned this, but I am a photographer. I mostly photograph babies, kids, families, with just a few weddings a year, and rarely bridal portraits. But, about 2 years ago, I was referred by one of my favorite clients. Her nanny was getting married in Florida, and she just wanted bridal portraits, so she asked if I would do them. Of course I did, and we had a lovely photo shoot at the botanical gardens among beautiful flowers and greenery. I remember the session fondly and we got some great images!

Now, typically, someone does a photo shoot, orders prints, and that’s that. Done. Finito.

That’s exactly how this session went.

Now, fast forward to our hospital visit when I’m checking email. Oddly enough, this particular bride was wanting additional images from her bridal session TWO years later. That’s almost unheard of.

I was going to respond and let her know that it would be a couple of weeks (because I didn’t know when baby Z would be discharged and I didn’t know what kind of care he would need and when I would be back up and running). I usually try to keep my business correspondence business-like, void of personal details. However, at the last minute, I thought it might be helpful if she knew why it might take longer than usual. So, I mentioned that my baby was at Texas Children’s Hospital in the neurology ward. When she responded, she told me that she was a neurology nurse at Memorial Hermann, but that she mostly worked with adults. (I had forgotten that while being a nanny, she was going to school to be a nurse).

I asked that if she didn’t hear from me, to go ahead and email me to remind me about her order. But, when she did, we were back at Texas Children’s in Critical Care.

It was after that 2nd visit at Texas Children’s that I really started my own research, just to get myself familiar with epilepsy. That’s when I started to realize that my little guy was really matching up to the Infantile Spasms checklist. I had read medical journals, and highly technical documents, as well as forums with other frustrated parents going through what I was going through. At some point along the way, I clicked a link which took me to a youtube video. That baby had very similar movements to Baby Z, and he had a diagnosis of Infantile Spasms. So, then I typed “Infantile Spasms” into the Youtube search bar, and saw lots of videos pop up. Many (not all, but many) of them had very similar seizures to the ones Baby Z was having, and they all had an IS diagnosis. After all my technical (and not-so-technical) research, I knew that if it *was* IS, that we needed to get that diagnosis sooner than later, rather than risk regression. This was all happening at the end of one week, and our 1st clinical appointment with our neurologist was on the coming Monday. So, I prepared my 2” binder with everything I had researched, my notes, questions, etc. I marked the Youtube videos for reference. I waited and got a couple of videos of Baby Z’s latest seizure activity, since it was doubtful he would do it during our appointment. I was ready!

As I mentioned in my previous post, my neurologist was a bit dismissive, and DEFINITELY did not think it was IS.
But, I had that nagging feeling.

I started to exchange yet another email to my client, and because I was so frustrated at that point, I happened to ask if she knew of any alternate treatments or any specialists… ANYTHING she could recommend, because he was on three anti-seizure medications, and was continuing to have multiple clusters of seizures every day. I still can’t believe I emailed my client with all that. SO unprofessional. But, she responded and was very helpful. I ended up telling her some of what I had found and how Baby Z’s symptoms matched up with IS, and I included a video. She happened to show the video to a 4-year neurology resident who was about to become an attending, and she instantly said “Infantile Spasms”. She took my client’s phone to the head neurologist who watched it and said “Infantile Spasms”. Then, they called and wanted me to bring baby Z in right away. They didn’t want me to go the traditional appointment route and wait a month or more for an appointment. Instead, I made the appointment directly with them, and was scheduled for a 23-hour EEG just 2 days later.

That longer EEG confirmed the diagnosis.

I just can’t believe this all just fell in my lap, and that it all came together so fast. I’m grateful though, because I’m not sure I would have known where to turn for a second opinion. I thought that the docs at Texas Children’s were supposed to be the best of the best.

(Please note: I had some poor experiences at Texas Children’s, but I know that they are a great hospital with great doctors. I’m sure if we had waited and eventually tried larger dosages of anti-seizure meds, or different medications or combinations of medications, and eventually another (hopefully longer) EEG, that eventually they would have gotten to the same diagnosis. But, this is my baby. My sweet little baby. He doesn’t have time for their kind of timetable.

2nd Opinion, 23-hour EEG, and Diagnosis

We went to the Memorial Hermann Hospital in the Houston medical center for the 2nd opinion and 23-hour EEG.  After doing my own research and seeing my baby have soooo many seizures, I knew what they were going to tell me.  But, I was soooo hoping that I was WRONG.  Unfortunately, they did diagnose my baby Z with infantile spasms.  I did not want that diagnosis, but I was glad that we got it diagnosed early and that we weren’t wasting any more time with the wrong treatment.

 

23-hour EEG

Baby Z getting a 23-hour EEG