Please could somenone help me understand these blood test results and

[tallmummy]

DS4 has a so far undx condition. At the moment he has hypotonia, GDD and hypermobile joints.

We have just had the results from his first batch of blood tests. Most are ok but his Creatinine Kinase levels are high. Pead says that this is commonly seen in young children and is unlikely to be significant.

Quick panicing mother look on internet - seems CK is to do with muscles but not sure what raised levels mean - poor kidney function?

Am waiting for pead to call back and left message with my excellent HV.

Sadly they will have to repeat the blood test - it was hellishly traumatic the first time. I shall be pushy mum this time and insist that a pead consultant does it first time rather than let a hot, flustered SHO have 3 failed attempts before the pead did it in less than a min.

Has turned into a rant but I don't like not knowing whats going on.Can anyone put my mind at rest and tell me what these raised CK levels might mean.

Oops - you can see I'm stressed by strange typing in title.

I'm sorry .. I understand how stressful this must be

but WHY aren't you listening to what your pead said?

he said its common in young children and unlikely to be significant

don't try to second-guess him, unless you believe him incompetent (or her) .. that way madness lies

At first glance I agree with the paed - CK levels can be transiently raised in response to all sorts of things and are only a small part of the bigger picture. Also agree with Twig that you'd go mad if you second-guessed professionals all the time!

I seem to remember that some of the GDD tests work by using CK as a baseline, so it may just be that a high level has messed up other results rather than being significant in itself.

Am feeling for you though - GDD is no fun anyway, but to be awaiting a further dx must be agony

I know I should listen to the pead and I'm not unduly worried. It's just that it says his CK levels are raised but she doesn't say what CK is/does and what the implications might be. Just really want to know what CK is in laymums terms.
Pead away till next week. My HV is asking a GP what CK is/does.

I'm more upset that he needs a repeat blood test after the last one left him black and blue.

ah, now I'm with you. I won't go mad as the biochemistry gets quite complicated (leaving it to the pros again...)

Basically, CK is a protein mostly found in muscle cells. If a muscle cell is broken open it releases its CK into the blood.
A wide range of things can cause CK release, including puny things like injections (or traumatic blood tests...)
It's really important to know that the CK is only part of the bigger picture (guess there were at least 10 more tests on the panel) otherwise it's like looking at a big painting through a magnifying glass - you can see the detail but it's meaningless out of context.

Hang in there

Thanks MrsB -HV has just told me something similar too. I think we are at the stage where we are desperate for a dx we will grasp at any snippet that comes our way.

HI tallmummy,

sorry you are feling a low eb at the mo.

My ds has the same dx's as your ds, although recently dx'ed with ataxia.

dylan is now 3.5 and has major problems with walking and doesn't speak.

regarding a proper dx, my advise will be to say that you may never get one, i've been through all the anxiety an devastation of test after test and i have now come to the conclusion that lathough a dx would be good, it won't really change things if you see what i'm saying.

Also wondering what all the talk is of testing GDD?????

As far as i'm aware there are no formality of tests to dx it as it is a mixture of things and is basically in my eyes a term for unknown causes.

Sorry if i'm wrong, but have been looking into it for 2 years and have always hit brickwalls.

I really hope things get better for you and please try not to worry over a DX, it's hard i know, but just take pride in being a good mother and remember that you have support on here if ever needed.

Take care.

Butty.xxx