Will CamKinase register even if on steroids

[FallingApart]

As I mentioned this morning, we are trying to get PEX organized for DD. All the blood that we had stored from this past summer has been discarded. I was completely devastated when I learned that because I know for sure that one of the samples should have tested high.

 

The only sample of have of DD is one that was drawn just before this episode started. It was drawn 2 days before she got sick again so I don't know what those numbers would look like. DD is doing horrible right now with horrible rages, violence, foreign language talk, bed wetting, separation anxiety, OCD, general anxiety, etc, etc. She started steroids last Wednesday and is now on her 7th day.

 

Would the CamKinase number still show up after being on steroids this long? She has shown no improvement and has continued to deteriorate while on the steroids so I would really like to see this number but I am concerned the steroids will cloud the number.

 

Does anyone know for sure?

[sf_mom]

I understand it can lower the overall score. Our son was 11 days post 5 day steroid burst and his CaM Kinase was 124 'lower range PANDAS'. I plan to retest him soon now that he is post IVIG and not showing symptoms.

 

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[FallingApart]

SF Mom, wouldn't the IVIG help to lower his number also? Do you think it is in our best interest to do the test or not do it since she has been on the steroids for 7 days?

[EAMom]

I would draw blood now. Even though you've started steroids, since your dd is symptomatic, I think you might still have elevations of Cam kinase ll.

[bronxmom2]

I would draw blood now. Even though you've started steroids, since your dd is symptomatic, I think you might still have elevations of Cam kinase ll.

 

I was thinking the same thing. Is Dr. L willing to do the PEX without the Cam Kinese #?

[sf_mom]

I still think you should know but recognize that being on steroids will lower the score. Again, I plan to test our son shortly and at one year post IVIG. Hopefully, it will act as a baseline for your child and maybe determine decisions about antibiotic dosage, etc. AND, six months, one year, 10 years from now they will know soooooooooooo much more to help us make informed decisions.

[bubbasmom]

I'm sorry you're going through all of this. How long has this particular episode been going on? How long ago was the IVIG?

As I mentioned this morning, we are trying to get PEX organized for DD. All the blood that we had stored from this past summer has been discarded. I was completely devastated when I learned that because I know for sure that one of the samples should have tested high.

 

The only sample of have of DD is one that was drawn just before this episode started. It was drawn 2 days before she got sick again so I don't know what those numbers would look like. DD is doing horrible right now with horrible rages, violence, foreign language talk, bed wetting, separation anxiety, OCD, general anxiety, etc, etc. She started steroids last Wednesday and is now on her 7th day.

 

Would the CamKinase number still show up after being on steroids this long? She has shown no improvement and has continued to deteriorate while on the steroids so I would really like to see this number but I am concerned the steroids will cloud the number.

 

Does anyone know for sure?