hmm..creatinine kinase?

realisticdreams

Morgan had quite a bit of labwork done, including chromosome analysis (not back yet), a lot of things were a little high or a little low, but this, was very high.  I think it was 280, the pedi said normal is under 135 in a child, preferably under 80 though.

He said that she (neurologist) must think M has a neuromuscular disorder because that sometimes CK can be high in kids with CP (her MRI was clear though, although I know this is not definitive, I did not have any problems during pregnancy or birth with her that would be indicative of CP, and she has no symptoms of CP like P had) or muscular dystrophy.

I'm waiting for the neuro to call back which at this point probably is going to be tomorrow.  

And freak out mode is well underway. 

Jcrab

Creatinine is related to kidney function, it may be her small kidneys or something along that line and nothing neuromuscular. Try not to worry, you will have more answers and a plan soon (hopefully). GL!

realisticdreams

Jcrab:

Creatinine is related to kidney function, it may be her small kidneys or something along that line and nothing neuromuscular. Try not to worry, you will have more answers and a plan soon (hopefully). GL!

That's what I originially thought too, but we are still awaiting her creatinine and buinine related to kidney tests, this, creatinine kinase is different, and it's related to muscle stuff only.

"Creatine kinase is also known as creatine phosphokinase or phosphocreatine kinase. An enzyme involved in the synthesis and use of energy-providing molecules, it's predominantly found in the cells of the heart, skeletal muscles and brain." 

st.augbride

Ds has mildly elevated CK, and we've been told by a physiatrist, neurologist, develop ped and regular ped to just kind of watch it over time, but that it's really nothing to worry about unless you are seeing other issues or a lack of progress. Really high CK would be in the thousands. Also, CK will be elevated for a number of reasons, especially if there is any illness or GI issues at all. Our geneticist even said the blood draw itself can cause elevated CK levels. For us, ds has some minor neuromuscular issues, like a torticollis that comes and goes and switches sides, and so I even feel that can cause his CK. Anyhow, its really hard to find anything on midly elevated levels, but I was told that this is because it just isn't interesting enough to report! So, your best bet is to just reevaluate in a few months and then again a few months later to make sure it isn't increasing over time.

gimmietimmies

realisticdreams:

Jcrab:

Creatinine is related to kidney function, it may be her small kidneys or something along that line and nothing neuromuscular. Try not to worry, you will have more answers and a plan soon (hopefully). GL!

That's what I originially thought too, but we are still awaiting her creatinine and buinine related to kidney tests, this, creatinine kinase is different, and it's related to muscle stuff only.

"Creatine kinase is also known as creatine phosphokinase or phosphocreatine kinase. An enzyme involved in the synthesis and use of energy-providing molecules, it's predominantly found in the cells of the heart, skeletal muscles and brain." 

You are correct! I would be on the monitoring side of things. DS has his bloodwork done once a month, and the CK as compared to his creatine ran independant of each other. In fact, when his kidneys were failing and his creatine would stay below 100, his CK was completely in the normal range (100-150). However, when he'd have an "episode", his CK would reach astronomical proportions.

His highest as a lo (18m) was well past 10,000. It nearly killed him. 14 months ago, it was 150,000. He was in ICU for a month. Do we know what it is?? No. We know what it isn't. They thought for years he had polymyositis. We're pretty sure he doesn't now. He's being tested for a carnitine disorder. Waiting is painful, because CPT Type II fits him exactly.

Hopefully the slightly elevated CK is a one off (it can be from irritation during illness), but given your dd's other issues, I'd keep an eye on it. Can't hurt.

ETA: Shoot, I meant to add, don't freak out. If her CK's get elevated again, you may know it before the lab work. She may complain of being sore or stiff, and less active.