Tuesday, August 1, 2017

I Know You're A Neurologist... But... HELP!

Last Wednesday Little Man finally had his follow up with his neurologist. We'd had to cancel the last one because Hubs went out of town for work and I was flying solo with the boys and no sitters, so we'd been waiting since mid March for this appointment.

The logistics of getting up to Hopkins is always a nightmare for us because we live so far away. It ends up being four hours round trip, not including the stop at the end for a Costco run. And as tedious as the drive is it really isn't the worst part. The worst part is getting Little Man to walk through the massive hospital when he won't keep his shoes on, has to stop and lean on you every few moments for a rest, and needs constant redirection to keep moving at his snail's pace. And if you've ever experienced a toddler cling, a giant nine-year-old cling is ten times as heavy and just as frustrating.

So I opted to bring the beach wagon, as a way to hopefully bypass the taking off the shoes and slow walking around. Definitely wasn't ideal, definitely wrenched my back dragging 65 pounds of stroller and kid. But it was better than not using anything. More on that later.

We met with neurology for his med check and all things brain. His doctor upped his medication levels despite no seizures recently because Little Man had a pretty big weight jump from the hospital stay. He also thinks that we will probably continue with the medication for at least two more years, if not for his lifetime. The risk of seizures with Little Man is now just too great. With his foot and muscle issues on my mind however, we ended up talking mostly about what our next steps were and if we could use Hopkins as our point of contact.

The neurologist was amazingly patient and walked me through way more than he is obligated to... and when he didn't have an answer he took the time to ask his boss to figure out more ideas. I freaking love residents. I've had plenty of bad experience with doctors, but residents rarely let me down.

So about that foot... we have to call our insurance company, find a specialty pharmacy that will ship the Botox to my house, and then I have to bring the Botox to a doctor who specializes in physical rehab. That doctor will do the injections, which should loosen the muscles enough to get an AFO or cast on the Little Man. Botox only lasts for 6-8 weeks, so we're probably looking at more than one set of injections, which is a four hour round trip to the doctor's each time. What a nightmare! But all of the doctors agree, Little Man is slowly losing the ability to walk, so it's a non-negotiable.

We also are getting a prescription for more physical therapy and a transport chair (aka, stroller for big kids) to help us cart Little Man around without using the wagon. PT is of course at Krieger in Baltimore again, so we're looking into a class I can take as a caregiver to be able to do the stretches and exercises at home. Hopefully I could learn a few exercises and talk about them with his school therapist as well, since they've backed off so much of the physical therapy in his IEP.

We've barely scratched the surface of what comes next for Little Man and I'm already an anxious, hive-covered mess. For someone who hates talking to people on the phone and who has major panic attacks doing highway drives, so far this is making the next few weeks look hellish.


  1. If you launch a Go-Fund Me page for this I'm in. . . whether used to fund an over-night stay near Hopkins or Kreiger or wine when the day is over. . . . I would love to make this easier for you and I am willing to bet that there are others out there who also want to help you through this!

    1. That is so thoughtful of you, thank you! If we ever decide to do one, I would of course let you know. We (as a family) have always thought of those as a sort of "last resort" for people in need and luckily, we don't feel like we are at that point yet!