FRUSTRATED with Neurologist about bloodwork!

[saidie10]

Hello everyone. I am frustrated! I have approached the Neurologist about doing the following tests in addition to the bloodwork we will repeat on my son in late May (the ASO and the Anti-DNase and she just doesn't see the relevance of doing all this expensive testing.

 

The tests I told her I had researched and with the advice of someone from this board these were the tests I had found:

 

Streptozyme

Mycoplasma titers

EBV Panel

Copper (serum) ceruloplasma titers

Natural killer cells

CD3-C16+CD56

IgG subclasses

Subclass 1, 2, 3, 4

CD57, CD3, CD8 Flow Cytometry

CBC

Lyme Disease antibodies, IGG, IGM Western Blot

Pneumococcal Antibody Panel

Natural Killer Cell Functional Assay

Lymphocyte Mitogen Screen

ESR-Sed Rate

CRP-C-Reactive Protein

AP50

Neutrophil Oxidative burst

 

So the Neurologist admitted she would not be able to interpret the results anyway because it is not her area of expertise and I said it is my understanding there are immune issues we should look at too since this is an immune disorder, right? And she basically said well then maybe you need to just go to an Immunologist then. She said that the PANDAS cases she has dealt with have only involved the ASO and Anti-DNase B and it has been cut and dry. I asked if she was currently treating any PANDAS kids and she said no not currently. I then asked her if we should also be at least running a Streptozine test and she said she had never done that test and I said well doesn't that test for an active infection and not just past infections and she said she was not sure and she would look into it and add it if she thought we needed too.

 

Anyway, I just don't know what to do! Wait or not wait? He has very minor and infrequent tics which have progressively gotten better since his last known strep infection11 months ago and having his tonsils removed, but take him off the zoloft and the OCD comes right back so I know that if it is PANDAS, then the elevated antibodies are still negatively impacting his little body. We had talked about consulting with Dr. B but I just don't know if I should just go ahead and take the advice of someone from the board and just go see Dr. R (an Immunologist) in Dallas for a second opinion. I REALLY don't want to work with someone over the phone to treat him.

 

So my question is this, are these tests important and valuable right now or only if his results are weird from the second ASO and Anti-DNase B?

 

Thanks for any advice!

[kimballot]

Hi Saidie -

 

I was in a similar situation a few months ago. As frustrating as it is, your neurologist may be doing you a favor in the long run. Having someone who does not fully understand PANDAS interpret the results may be worse than not having the blood work done at all as it could lead you in a false direction or result in the insurance company not covering what you really need.

 

You need to see a doctor that specializes in PANDAS or is very willing to learn from the experts. I do not know anything about Dr. R in Dallas. Has he/she seen kids with PANDAS and / or is he/she willing to learn? That would be my first question.

 

Dr. B is excellent, but phone consults are difficult. Is there anyone on the PANDAS list that is pinned at the top of the forum who is within driving distance?

[Suzan]

This does not surprise me but I would be frustrated too. Especially since yes, this is an immune issue but it affects the brain so neurologists should, in my oppinion be very interested in this condition. Any neurological issues caused by bacteria is right up their alley. I agree that you need a new doctor, either a pandas expert or keep on looking in your area until you find one who is willing to learn. I know this is a very hard spot to be in, I was there all last year. BIG HUGS!

 

I know you didn't ask this, but I would add the herpes titers (hhv6 and I think it's hsv1 and hsv2). HHV6 was high in my dd and she improved quite a bit after taking antivirals to clear that infection.

 

Good luck.

 

Susan