It’s a bird, it’s a plane, it’s…. SuperStroke!!

We figured out the problem.

Apparently, my daughter’s brain has been tie-dyed.

First, before anything else, I have to say this: Happy birthday to my one and only, most beloved BFFD. 25 years and counting. כן ירבו. Love you more than words can say.

Ok then.

So, on Monday, we – by which I mean, G, R, and I – saw the SuperStroke team. Six members of it, in fact. First, the PT; then, the OT; then, the speech/language lady; then, the Doctor; and then, the education coordinator lady, along with the social worker.

I’d like to direct the following piece of free advice to the dozens – nay, hundreds – of pediatric neurologists who I am sure regularly check this blog.

If you are a pediatric neurologist who does not specialize in strokes, and a stroke patient comes to you, this is what I think you should say to the stroke patient’s parents:

“Pediatric stroke patients need to see pediatric stroke specialists. I am not a pediatric stroke specialist. Therefore, instead of pulling copious amounts of crap out of my orifices and pretending that I know anything about pediatric strokes, I will refer you to someone who actually does.”

Of course, there is precisely one (yes, one) pediatric stroke specialist in the entire metropolitan New York City area. When R was hospitalized for the stroke in July, do you know how many times it was suggested we pursue our follow-up care with him? Zero. When R was re-hospitalized for other neurological oddities in September, do you know how many times it was suggested we pursue our follow-up care with him? Zero. No one even told us he existed. No one even suggested there was any such thing as a pediatric stroke specialist, or that the regular stroke doctors weren’t 100% perfect for R’s case. (P.S.: They are not 100% perfect for R’s case.) When the pediatric neurology fellow came to speak to us the day of the discharge in September, and I had my computer open to the the SuperStroke webpage, which I had found myself, I mentioned to the fellow that we intended to pursue follow-up care for R elsewhere, since we felt she should perhaps be seen by a pediatric stroke specialist. At that point, the fellow remarked that there is, in fact, a pediatric stroke specialist here in New York City. Wow! Perhaps that was information that should have been offered to us? Like maybe when she had the stroke?

Yeah.

What were they thinking? Why did they treat this like they knew what they were doing? And why did G and I know better than they did?

[Aside: We will not be suing. Please do not suggest that we do so. We will likely write a polite letter to a number of individuals and outline exactly what took place, but that is it. They took outstanding care of her and did many, many things right, and we are very grateful to them. They just, you know. Didn't know their limitations, or anything like that.]

At least the stroke doctor at that hospital knew better. The stroke fellow suggested in September that we see the Big Fancy Stroke Doctor, so I called to make an appointment with him while we pursued the SuperStroke people. I figured she could at least be seen by someone who did strokes while we were waiting for the SuperStroke team. And do you know what Big Fancy Stroke Doctor’s receptionist said when I called? “Dr. Fancy Stroke doesn’t see children.” Hallelujah!! Someone at that hospital at least seems to recognize that kid strokes are different animals from adult strokes. Lack of oxygen to the brain – and that’s about it. Kids’ brains are very, very different from adult brains, and kid strokes are very, very unusual, at least the kind R had. They should have realized they were out of their league. They should have told us we should see someone who knew the difference between a kid stroke, and their own rear end.

Don’t listen to doctors, people. Just don’t listen to them. Listen to your own brains, assuming they haven’t been tie-dyed. We were so gaga over this hospital during and after the pneumonia that it took way too long for the idea to sink in that they were capable of doing anything wrong. We were so overwhelmed and grateful and in awe of their greatness that it took too long for us to truly consider that perhaps the stroke was not being handled in 1000% the best manner. They did many, many things right, of course, and they are obviously outstanding physicians. But at the end of the day, they did not know about pediatric strokes, at least the kind that R had, and they pretended they did.

Feh.

So, thank God G and I are intelligent people and that we eventually listened to our instincts, and thank God we made pests of ourselves until we found the right place and got all of R’s records and got R an appointment. Thank God for the existence of this program and these physicians. Thank you, God. Thank you, thank you, thank you.

So. I’ll put you all out of your suspense, to the extent that I feel comfortable doing so on a public blog.

Some big fat arteries in R’s brain, for reasons that will remain unknown with any certainty, decided to go ahead and get narrow. This, and not an embolism, is likely what caused the stroke in July. She had another MRI in September when she started having tics at school, and was taken to the hospital by ambulance on her fourth day of second grade. The MRI showed that the arteries had narrowed further. Here, in a few nutshells, is what Dr. SuperStroke said on Monday.

• The “most logical educated guess” is that the arteries began narrowing as a result of an inflammation caused during R’s pneumonia last November. There are two very  likely and highly plausible scenarios, given the specifics of the pneumonia, for how this inflammation may have occurred (I’m sorry but I don’t want to explain those scenarios here). (P.S. The neurologists at certain other hospitals disregarded the possibility of a connection with the pneumonia, though if I recall correctly they did consider it at first.) (P.P.S. The snuggly neurologist who happens to be married to my baby siSter suggested one of the two scenarios at the time of the stroke.) (I call him snuggly because I wish to tease him.)
• The fact that the arteries narrowed further between July and September is consistent with something Dr. SuperStroke has observed in pediatric stroke victims, but which is not well understood. When something prompts a child’s brain arteries to begin narrowing, they apparently tend to continue to narrow as the child’s brain continues to grow – even when the infection or whatever is no longer active. They don’t fully understand why this happens, but they’ve apparently “seen it a lot.” (P.S. Note that this phenomenon is unique to children’s brains. Note that this is something that is not known by people who do not specialize in pediatric strokes.) (Hello? Earth to the other hospital?)
• R needs to have MRIs (MRAs, if you want to be technical) every few months so we can monitor the narrowing. If the narrowing progresses further, which it might, they’ll consider operating. Like, on her brain. Like, you know, where they slice her skull open with a saw and grab hold of her brain arteries and start manipulating them around, and hopefully they don’t suddenly tremble or cough or sneeze or whatever and accidentally slice any big chunks of it off. God forbid. Heheh. (God forbid. God forbid.) Of course, it’s equally possible that the arteries will not continue to narrow, or that if they do, they will not narrow to that extent. (Please?)
• We should assume that R will be taking aspirin every day for the rest of her life. (She’s seven.)
• Contrary to what we have believed this whole time (based on what the other hospital believed) (because they didn’t understand this stroke, see, because it was a pediatric stroke), if God forbid R appears to be having another stroke, which she might, she should not – repeat, not - be given TPA. This is because the stroke will presumably be caused by the arterial narrowing, and not by a clot, which means TPA will be useless – and, not only that, but because of particulars in the way her blood vessels have been compensating for the narrowing, TPA could in fact cause a bleed, and thereby possibly kill her. Heh. So in other words, we don’t have to worry after all about always being near a big fat awesome children’s hospital, and in fact all of our rerouting of our summer road trip to be sure we were always within range of such a hospital was not, in fact, necessary. Oh yes, and TPA could kill her. Now that’s a paradigm shift. Must be near TPA at all times –> stay far away from TPA. Of course, they used TPA to drain the thick horrible kaka from her pleural cavity during the pneumonia, but that’s different. That wasn’t in her brain. No TPA in the brain. Repeat: No TPA in the brain. TPA in the brain = not the only thing that could save her. TPA in the brain = bad, bad, bad. No TPA in the brain. This is actually unbelievably liberating, and very good news.
• The tics, for which R was hospitalized in September, are not in fact “a simple unrelated tic disorder, very common at this age,” as was stated by the neurologists at certain other hospitals. Actually, the tics are a very standard delayed symptom of the sort of stroke R had. They presented in a highly unusual manner, but still. They appear to have been the result of the stroke. So – pneumonia –> stroke –> tics, as opposed to “lightning just keeps striking your kid.” Of course, as a qualified history teacher, I knew all along that the three things were related, and so did G, as a trained rabbi, and my mother-in-law, as a highly senior librarian, and my mother, as an attorney, and Babysitter Allison, as a nursing student, and oh, wait – everyone else we know who has a non-tie-dyed brain. Heh.
• Baruch Hashem, R has recovered physically in an astoundingly, unbelievably awesome manner. The words “astonishing” and “amazing” were used by Dr. SuperStroke, who was very excited and taken aback by the lack of any residual physical symptoms. So, score a major one for my little girl.  Thank you, God. Thank you.

I think that about wraps it up. R also needs some therapies and all kinds of further testing. And, I’m pleased to report, we also learned that the academic issues and whatnot that she’s been experiencing post-stroke are very, very likely to improve. We have noticed some improvement since the beginning of the year, and we were told to expect further improvement, though probably not to her pre-stroke levels. So maybe I’ll get some more of my old child back. But not all of her.

Well. RS is home from school today with a low-grade joke of a fever, and she keeps nagging me about something called “lunch,” which I think the Nephew might be expecting also, now that he’s made it clear he is not going to take a nap. But I didn’t want to wait any longer to get this information posted.

I just want to say that while I obviously sound sort of bitter and freaked and such throughout this post, which is of course accurate, there’s another side to the coin, and that is the fact that I, and we, are so overwhelmingly grateful to Hashem for the miracles and blessings we’ve received and continue to receive. The miracle of how little damage R’s stroke did; the miracle of the existence of the SuperStroke team, in a city within reasonable driving distance of our home; the miracle of our friends and family, and their love and support and willingness to do everything and anything and anything else; and more than anything, the miracle of my little girl, who is a source of explosive joy and laughter and deliciousness, and was so throughout the day on Monday (charmed the pants off the entire team, as usual ). I can’t begin to express what it feels like to have seen Dr. SuperStroke (and everyone else) after four months of empty confusion and limbo, and my gratitude to God is overflowing. Just in time for Thanksgiving, too. Break out the turkey.

Of course, the denial, anger, etc. are there too. But so is the gratitude, and that’s what we’re going with for now. The other stuff will have its days on this blog, but in the meantime, there is very, very much to be thankful for, and at least right now, I’m able to see it.

Tags: Stroke