Improvement on steroids = PANDAS?

[MarcP]

Hey,

I've been reading on this forum (whis is a great ressource) for quite a time now but this is my first post. English is not my native language but I hope you can understand everything. I'm a young adult and have ocd since I was small child. Roughly a year ago my ocd almost completely vanished  for some days while I was taking steroids for another reason. Then I was searching on the internet why that might have happenend and found out about PANDAS. I also learned about typical additional PANDAS/PANS symptoms of which I have/had some: I had bad separation anxiety while I was a bit younger, still have some texture and sound sensitivities and my mom told me that when I was young I had phases where I needed to urinate extremely often. On the other hand my ocd never "waxed and waned", it's always there (maybe this was different when I was very young while the whole thing started, but I don't know).

My question is, based on your experience, how probable is it that I might have Pandas or Pans? And if you think it's probable, would it be wise to do the Cunningham Panel as a first step? One week ago I told the psychiatrist who diagnosed ocd some years ago about PANDAS and while he finds it controversial I think he would support me.

Many thanks for reading!

Kind regards

Marc

Edited November 2, 2017 by MarcP

[bobh]

I am not a doctor, but would say its probable you have PANDAS/PANS.

If it were me or my child, I would not bother with the cunningham panel, but would invest time/effort/$ in finding any infectious disease that you may have (such as strep, lyme, mycoplasma, etc.).  Also have your tonsils and sinuses checked for infection.  There is a whole host of other things that can be done, this is just what I would do first.

[makeitfromscratchmom]

I totally agree with bobh. My kids were lucky to find doctor L in Washington DC to diagnose them both as  having PANDAS (very different symptoms though) and when she put both of them on steroids there was an immediate difference. That noted, if you noticed a difference in your symptoms your OCD and other symptoms  it would appear to be biologically based... My kids also had very similar symptoms that you mention. We have never done the Cunningham panel but have worked with first D. L with antiobiotics and then moved on to a wonderful naturopathic doctor, using supplements, Low dose naltrexone, and other things to bring both kids symptoms way down. We also found borrelia Lyme in both kids and mycoplasma with my daughter and have worked with those areas too. My daughter also had her tonsils and adenoids out and it also helped significantly. She had a number of OCD issues that are still there but not nearly as significant as they used to be. She still has the sensory issues but her handwashing has almost totally gone. My kids were diagnosed six years ago and are still have their moments but it is under control and they are able to function quite well despite some very bad years.

 

I am not sure where you are from or your language, but there are many support groups on Facebook in different countries and states in the US. I am currently in Europe if you need help there.

You are a strong man and you will overcome this. There are lots of people out there to support you like on this forum. We all want to help.

 

[MarcP]

Thanks for your kind and encouraging answers! I hoped a positive Cunningham Panel test result would facilitate further steps, especially with physicians who don't have a lot of experience with PANDAS/PANS but maybe you're right and it's better to directly start with searching for infections. I found this list of recommended tests on pandasnetwork.org. Is there anything you would add to this list right from the beginning, maybe lumbar puncture or MRI?

Quote

RECOMMENDED TESTS

• STREP
  ASO, Anti-DNase B Titer, Streptozyme.

• OTHER INFECTIONS
  Mycoplasma Pneumonia, Lyme, and other bacteria or viruses.

• ANA TEST (Antinuclear Antibody Test)
  Click here to read more about this test.

• CD4
  This test measures generally over-reactive immune response.

• IgG
  Subclass 1, 2, 3, 4 for total immunoglobulin levels

• IgA and IgM

 

Another question is, do you think it would be helpful to do a (longer) steroid trial? Based on your experiences, is there a small chance that baseline stays improved in the long-term after taking steroids for some weeks? I also feel that NSAIDs (like Motrin or Aspirin) help me to some degree. In a recent paper Susan Swedo and her colleagues mention the use of NSAID trials (for six weeks). I read that a lot of your children/you take Motrin on ocassion. Is it always just helping while you take it or are there cases (maybe after taking it for some time) where the positive effects lasted even after tapering if off?