CONOVER, N.C. (WBTV) - This is the third #MollysKids story today alone, but you guys... these kids are amazing. And candidly, I’m trying to update you on as many incredible kids as possible before maternity leave. So, thanks for helping lift these kids up by reading and caring, and please, stick with me. This is Koltin McKinney.
“He’s my world and I just want him to stop hurting.”
That's how his mom started her email. Felt like a wildly understandable statement from a parent. None of us want our kids to hurt. Especially from something rare, quiet, mysterious... and something you spend years wild-goose-chasing to identify, only to try to kick it to the curb.
We first featured Koltin back in January. He’s from Conover, in Catawba County, and now 6-years old. You can read more about his original diagnosis and childhood obstacles in the first post on him (HERE >> http://tinyurl.com/KoltinMKs), but bottom line, we featured him after neurologists said Koltin lived with Myotonia. It’s similar – though not exact – to Muscular Dystrophy.
“We’re still learning about how Mytonia will impact him,” his mom Casey said at that time. “We know his muscles contract and spasm. We fear if it isn’t well-controlled soon, his muscles can permanently break down and weaken his organs.”
She said a more visual way to understand what Koltin lived through was trying to imagine having several intense Charley Horses throughout a night. That’s what would happen to Koltin -- moving and twitching he couldn’t control.
“He’ll wake up crying and screaming about how much it hurts,” Casey said back then. “It starts when he’s trying to rest. The pain is in-and-out so he can get some sleep, but when it hits, it’s bad.”
But since that post in January, Koltin has gone to UNC-Chapel Hill for a second opinion. His new doctor diagnosed him with Dystonia… and... get this... said she didn’t believe he had Myotonia at all. She went as far as saying Koltin had been taking medication the last two years she doesn’t think he needed to be on.
“Frustrating,” said Casey. “But also hopeful. Maybe now we could fix what was wrong and help our son.”
Koltin also got in a sleep study this past March. That study showed he had pretty high sleep apnea, and some restless legs. After the sleep study, the ENT doctor (Ear, Nose, Throat) decided it was best to have Koltin get his tonsils and adenoids out, which happened last month.
“Afterwards he never complained about recovery or surgery pain,” Casey said. “But he had a horrible time with his feet and legs hurting him. So, his neurologist decided to put him on a strong drug called Gabapentin, to see if would help him.”
Casey said they started on 2ml, which didn’t do much. So they went up to 3ml, which is where he is now.
“The last few nights Koltin has said his feet hurt,” Casey said. “We’re waiting to see if it goes away. If not, we might go up to 4ml and try that dosage. The doctor said we can go up to 6ml safely, but we’re trying to do as little as possible and take it step-by-step.”
Casey says if there are still issues by October, her son will have another sleep study, more labs, possibly an MRI, and -- who knows? -- maybe stop the Gabapentin and see what else might work.
It’s trial and error. Awful if you’re sick yourself, trying to figure out what’s wrong; worse when you’re trial-and-error-ing with your child’s pain.
We tell the Good, the Bad and the Always Real. If anyone has suggestions for Casey, feel free to comment below. She’ll read them all. Otherwise, she says she feels good about their new doctor in Chapel Hill, and just wanted to update us all on Koltin’s progress.
PS: Love this picture of him. Personality, much??