I just wanted to share a flyer I found online in case you want to use it as well. I’m going to print one to keep at home (for the babysitter) and one for his pre-school. Because I.S. babies are prone to developing other seizures, I just want to be sure his caregivers know what to look for and what to do. I’m also going to put our phone number and the doctor’s phone number on it, and I might even write a note to remind them to use their cell phone to video it, or if not video, at least keep an eye on the clock and time it. Here’s hoping they NEVER have to refer to it, but they’ll have the info, just in case. Thankfully our pre-school teacher has dealt with this before, so it makes me feel a little more confident that she’ll know how to handle it. 😉
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.
You know, with all the doctor’s we saw at our two stays at Texas Children’s, and the fact that we were following up with one of them who was familiar with baby Z’s case, it never really occurred to me to get a second opinion. I mean, we saw multiple fellows, attendings, and of course, tons of residents. Plus, where else was I going to find specialists in pediatric (infant) neurology. I thought we were where we were supposed to be. I thought we had the best of the best.
But, strangely enough, a second opinion just sort of fell in my lap. (Really. It’s a strange story that I’ll share with you soon.)
Anyway, now all the sudden baby Z has a 23-hour EEG scheduled for this week at another hospital with a specialist in pediatric neurology, and who further specializes in infants with epilepsy and Infantile Spasms.
I guess we’ll have our answers soon enough. I don’t want my baby to have IS, because it’s a worse diagnosis. But, if he does have it, the sooner he is diagnosed and treated, the better. If that’s not what it is, at least we’ll confirm it, and know that we need to try something else to help him. I just want him to get the help he needs.