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.

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Surprise, Surprise. The Dr. didn’t listen.

We went to our appointment with the neurologist today.  But, it didn’t go as planned.

I brought up some of my questions about Infantile Spasms, how his seizures have changed, the video I had as evidence, and the fact that he isn’t responding to any of 3 medications.  She explained that the EEG doesn’t show the hypsarrhythmia, and that we just don’t have the right dose of the right medication yet.  She was nice, but at the same time, dismissive of me.  I get it.  I mean, she’s a neurologist, and I’m just the mom.  But, you know what?  She is *just* a neurologist.  I AM THE MOM.

Something isn’t right.  I wish she would listen.

Hmmm. Epilepsy or Infantile Spasms?

Our appointment with the neurologist (Dr. H) is this morning, and since I know that as often as he does have seizures, that he probably won’t have one during the time we are with the neurologist, so I decided to prepare by waiting and watching and getting a good video.  His seizures have changed, so I want to be able to show the doc.  I have also been doing my own research, just trying to understand a little bit of what is happening and trying to figure out how to help my little guy.  I’ve filled a 2-inch binder full of print-outs, notes, etc.  I hope I’m wrong, but I really want her to re-consider her diagnosis.  He isn’t responding to any of the three anti-seizure medications he is on (Trileptal, Clonazepam, & Keppra), and he continues to have more and more seizures.  From the research I’ve read, I’m concerned that he might have Infantile Spasms, rather than just epilepsy.  If you don’t know anything about epilepsy or Infantile Spasms, you might not realize the difference, but it is significant.  Basically, Infantile Spasms can cause the little one to regress (become mentally retarded).  But, if it’s caught and treated early enough, there’s a good chance the baby can progress and develop normally.

Why am I (just a mom) questioning a doctor (a neurologist, no less)?  Well.  I don’t know.  I wish I didn’t feel the need to.  But, I feel like all signs are pointing me toward this diagnosis and she’s just not seeing it.  She’s fixated on the EEG he had 2 weeks ago and the 30-minute worthless repeat.

Okay.  I need to tell you that I have been doing a LOT of research.  I mean, a LOT!  I realize that Infantile Spasms has a very specific pattern on the EEG called Hypsarrhythmia.  But, I’ve also read that an IS diagnosis is based on three criteria, but only 2 of 3 need to be met.  He most definitely meets the other two.

I just want her to watch the video and see the seizure activity.

Here’s the seizure from last night.  It starts about 16 seconds into the video.

I also stumbled upon a youtube video of a baby with IS that had seizures that are almost identical to my little one’s.  So, then I started searching Youtube for Infantile Spasms, and I started seeing LOTS of videos of babies who had seizures like my little guy.  I know that this particular “research” might not sound very reliable, but all these babies had seizures just like my baby’s, and they all had an IS diagnosis.  I just really hope she listens to me and watches the video.