Wednesday, November 10, 2010

Fun with doctors! A visit to the pediatric neurologist

I wasn't well prepared for our annual visit to Max's pediatric neurologist today. Usually, I have a long list of questions, but I hadn't gotten around to it. So I winged it. Given that this is Max's head we're talking about, and given that this doctor costs a small fortune, that might seem totally irresponsible. But for once, I didn't have a whole lot of concerns to air.

For the first part of the appointment, Max stared out the window at the cars going by (happily, the office is located adjacent to a busy roadway) as Dave and I reeled off all the great stuff Max started doing in the last year:

• Max is walking up stairs by himself.
• He's trying so much harder to stay words, and has been speaking sentences. We may not always understand them but, he's trying.
• He's using his pointer finger. And he's learned how to navigate the iPad.
• He's been showing us what an amazing memory he has—his so-called "special strength." The doctor pointed out this means he's also adept at sequencing (as in, Max knows that to get to the car wash first you have to go here, then there, then turn here), which will come in handy for math and if our car navigation system ever conks out.
• He's recognizing words when he reads signs, books, t-shirts.
• He's more into coloring, which he used to hate (and which is really great for developing fine-motor skills).
• He's using both hands more spontaneously (his right hand is the weaker one because the bilateral stroke was worse on the left side).
• He's got a best friend (a kid at school) who he tells us about all the time.
• He's got great hair. OK, this I didn't say. But it's true.

I had concerns about Max's still-developing trunk control; if he gets stuck in a funny position in bed, he's not yet able to adjust himself. The doctor thought that we should consider aquatic therapy again, which Max hasn't had since he was a baby. [What I thought: "OMG! How are we going to fit another therapy into his jam-packed schedule?!" What I said to the doc: "Sounds good!"] We also spoke about Max's continued challenges with loud noises and sensory OD. The doctor suggested we get him a good set of earbuds. Lightbulb! I don't know why it sometimes fails to occur to us to try obvious solutions. [Banging head against the wall.]

I asked why Max wasn't verbalizing questions. "It's part of his language development—it's not yet in his repertoire," the doctor said. "You have to teach him how to ask questions." He encouraged us to put even more questions on Max's iPad that would encourage interaction with us and other kids, simple questions like: What's your favorite flavor of ice-cream? Where do you live? Would you like my dad to take your car to the car wash, perhaps?

I held back on asking what was up with the car wash obsession, because what the heck was the doctor going to say? It's caused by a lesion in his brain?! Whatever, it's one of his quirks, like Sabrina's insistence on pulling up whatever pants she's wearing to her knees. Although that doesn't cost us $10 bucks a pop, or potentially cause paint to peel off the car. But, still. Max deserves to have his quirks, like every other kid does.

I was very, very, very psyched that the doctor is no longer measuring his head. That used to torture me when Max was little; I knew the microcephaly (small head size) was a result of the brain damage from the stroke. I'd get teary when the doctor would take out his tape measure, because I knew we'd find out that Max's head size was way below normal. Although now it's proportional, and the good hair has definitely come in handy.

Max loved showing the doctor photos on his iPad. He didn't want to get on the scale (maybe he inherited that from me) but he finally did, and he'd put on some decent pound-age (that he most definitely got from me). It's quite possible that, soon enough, he'll have the heft to push Sabrina around and tell her to quit teasing, although I don't think I'll be putting that goal on his IEP.

At the end of the visit, I asked a question I already knew the answer to. I couldn't help it; I needed to hear the doctor say it. "Is it possible Max could have another stroke?" I asked. The doctor looked at me. "It would be verrrrrrry rare. Reportably so. Most kids have their strokes, and they're done."

Dave and I both walked out of the office feeling very content. And Max?

He wanted to go to a car wash, of course.


  1. The last time I was at the doc I had a list out and was checking things off like a mad woman.

    Ear buds! Fancy that. Nothing like a non-therapeutic solution, right? (at least, cost-wise).

    They don't measure Charlie's head any more either--I don't know if she's satisfied or if she just forgets.

  2. Congrats on the great appointment! It sounds like Max is doing fantastic!

  3. I think aquatic therapy is a winner for trunk strength, and you might find it fun yourself!

    What a great doc visit! Uplifting, to say the least!!!

  4. I held my breath on your stroke question - and still exhaling with relief. By which I mean: I hope his answer brought you relief.

    Great hair does a lot for our kids. Leo has the best hair in our family, undeniably. I cry during shornings - those glorious locks!

  5. Hooray for a great appointment! What a long list of accomplishments for Max! And, he totally has hair like McDreamy; he's a lucky kid :)

  6. Please take my car to the car wash any time. I want to do my part.

  7. Another great post - helpful to readers, Ellen. I didn't know the answer to the last question either, but I hope other readers will ask their own physicians instead of assuming the answer he gave you applies to all.

    Talk to your therapists about how to fit-in aquatherapy - which is really physical therapy using the medium of water (also done by some OTs). Have you shared your concerns about his trunk control with his therapists ?

    Happy with you on Max's many positive developments and the many positive responses from the neurologist. Barbara

  8. So great to read the list of Max's accomplishments in one place! Sounds like he's doing great overall.

    Aquatic therapy IS great for the trunk control (and everything else) but you can find a cheaper and easier solution in the meantime; spend time with him sittign on a large playground ball or one of those disc-sitters. That way he can have his feet on the ground for stabilization but the dynamic movement of the ball helps strengthen the muscles. We've gone through many of the same things with Nik's trunk/torso stability.

    I, too, held my breath when I read the stroke question. I know the doctors don't have a crystal ball so nothing is ever guaranteed, but I hope his confidence that the chances were so slim brings you some peace.

    And, yeah, Max TOTALLY has great hair! I'm kind of envious of that one. *sigh*

  9. I always love a great doctor's appointment and the ear bud suggestion was great. They now make noise cancelling ear buds, which might be helpful.

  10. Max does have great hair!
    They don't measure T-man's head anymore either. He was always the opposite - his head was too big. Thank goodness he has grown into it! : )
    Glad Max is doing well ! His smile is just so precious. You are a lucky mama!


    Funky sound stopping ear muffs for Max, they even have some with brown on them.

  12. I go with lists too. Aquatherapy is awesome, i went last summer after i had surgery. Do you live in NJ, the doc totaly looks like my Neuro. Max seems like a cool kid.

  13. Great hair counts for a lot! Its wonderful to hear how well a child is doing even if I will never know Max personally! And I am releived to hear about the stroke a preemie mom (our son didn't have any lasting issues but certainly could have) and a caregiver for developmentally disabled children , you honesty and strength inspire me. And so do your great kids. I reccomend your blog to all my coworkers!

  14. Very Nice appointment, glad to hear all of the good news, Yeah Max! Hailey absolutely screams bloody murder at every dr's appointment, I often wonder if they get a good enough assessment. Hailey has poor trunk control as well and aquatherapy has not yet been recommended but I take her swimming once a week because I know it is good for her tight muscles. Max definitely deserved a ride through the car wash after that appointment.

  15. Yay Max! I sort of cringe too when a doctor suggests a new therapy, or even just continue the old one. Queen Teen is A) a teenager, and B) A TEEN AGER. You try getting her to do anything the doctor wants her to.

    Queen Teen was prescribed hippotherapy (horseback riding) which she loved when she was young. It actually did help stabilize her trunk. I wonder if Max would like horses.

    (and now mom is thinking, thanks Terena, for suggesting yet ANOTHER thing to do. lol)

  16. Thanks for the good wishes, all. And yes, Barbara, you're so right, as always: Even if Max is at low-risk for a stroke doesn't mean that's true across the board. Though it is true that the majority of infants who have strokes do not have repeat incidents.

    Meg: Doc is Abba Cargan.

    Beth: Ah, yes, the big therapy ball. I need to bring that and all of this up with his PTs/OTs.

    Claire: Thanks for Baby Banz link, will have to see if they pass Max's high criteria for stylishness.

    Terena: We've done hippotherapy, it was very helpful to Max when he was young. It actually did come up today, but doc thought aquatherapy would be better for him now. Oh, and I can relate to having a teenager, because I think there is a hormonal teen stuck in my five-year-old's body. That's how she acts, anyway.

  17. We are very, very pleased with hippotherapy - doing it as OT but cleraly we are getting PT work out of it also. I would think a pool might be loud in the way that he hates (I kinda hate it and I don't have sensory issues!) so I vote back to the horses.

    Hannah and I play a tip over tickly game which is really just me making her do sit-ups in disguise. Fun for both of us and it makes it easy for me to see her strength improving.

  18. I have super sensitive hearing and actually took it upon myself to call a hearing doctor yesterday. They took me in that day and made me custom fit ear plugs for only 80$. It was worth every penny to get my sanity back. They even come in cool colors, although I am sure max will chose purple or brown. The process only takes 5 minutes, they put a foam into your ear and it dries really quickly. Then they send them off to a lab to make your permanent ones.

  19. I asked about earbuds or such for Lizzy and the doctor discouraged that. I am going to ask a different doc as we see one million of them... but it did sound like a wonderful appointment and I am celebrating all of the things Max does!!! I never thought to ask about another stroke... oh my goodness; add that to Lizzy's list...


Thanks for sharing!

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