Chiari Comforts

Chiari Carnival 6
Chiari Comforts
Therapy, tricks, or tools for symptom management

I asked Kyle how he manages with Chiari. He says, "I just do." I guess he's right. He just does 'cause what else is he going to do? Lately he talks about how much he hates all this. I don't blame him, I don't like it either. I'm often sad for him but I try not to show it. I wait to break down after my house is quiet and everyone is asleep. I watch him sleep from his bedroom doorway. I think about how much he has grown and changed. I think about how hard it has been for him lately.

His symptom management is to rest when he feels yucky. He doesn't push himself too much anymore to keep going. A week ago, I tried to make him go walking with me around the park in our neighborhood. He didn't want to go but I made him. We didn't get too far until he just sat down on the sidewalk and refused to move.  I was thinking, 'great, how am I going to get him back home?' Finally, I had to bribe him. He likes that actually. But I'm glad he refused to walk with me because he is understanding his limits; he knew he wasn't feeling good and unbeknown to us at that time, he was suffering from major swelling in his spinal cord.

Kyle doesn't focus on his Chiari or his pain. Well, maybe a little on his pain. He focuses on Minecraft and Call of Duty. He focuses on things such as how to be in the hot tub/spa without getting his halo vest wet; he focuses on making me take him to get ice-cream or Starbucks. He loves to manipulate me. And I let him. I know he's bored, really. But he's limited on the activities he can do.

For pain, all I give him is over the counter meds. He doesn't like to take many prescription meds (yet). I'm sure as he grows and if things change he will. My favorite pain reliever is naproxen, so I give that to him the most for his neck and head pains. I've used ice packs on the back of his neck too. Not sure if it physically helps but he can rest and relax a bit.

One of his 'tricks' I guess you could say is he chooses to drink his nutrition more than eat. I'm not sure if this is because of the Chiari or because of the limitations to swallowing due to the halo. I mean, he can't stretch his throat (tilt his head back or forward) like most people do to swallow. I'm curious how it will be for him when he gets out of the halo. I'm guessing his fusion might make stretching his throat difficult as well. Any Chiarians want to comment on how it effects them? But he's big on shakes and ice cream and avoids any foods that is hard to chew and swallow.

Other tips he favors: Take Diazepam/Valium right before MRI's; use a wheel chair for an all-day outing; and rest as soon as you feel dizzy.

Take care and stay strong.


christine said...

He is a strong boy. I admire his will to fight and survive.

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