New here, still trying to figure out my son

[reikiriki]

I'm having trouble getting help for my 11 year old son. He has had various tics that come and go since he was about 5. He recently had a strep A infection and shortly after, his symptoms became much much worse. I've had to pull him out of school. He had an EEG which was normal, but they could not get him to sleep.

His doctor wants to wait for a neuro physical exam on Jan 14 (There is only one Pediatric Neurologist nearby and she has a waiting list) before he will proceed with any other options. He has never heard of PANDAS.

After reading for hours, I am convinced my son meets the criteria for Tourette Syndrome. He has multiple physical tics, and vocal tics.

I just don't know where to start, and waiting another month feels scary. I'm still confused as which route to take if he does get a PANDAS diagnosis.

What we've done so far:

He tested negative in the office for Strep, but it came back positive after it cultured out in the lab. His symptoms had subsided by then because I was using natural antivirals/antibacterials. The Dr did not give him an antibiotic at the time of his high fever because his throat swab was negative.

He began having increased tic symptoms and then we started him on a round of antibiotics because of the positive lab culture, but his strep symptoms had subsided by then.

They do not seem to have made any difference, and 3 weeks later, his symptoms have worsened with multiple tics at a moderate to severe level.

Any advice?

[lw47]

It sounds suspicious for PANDAS with symptoms getting worse after Strep infection. You may want to consider consulting with Dr. K in Chicago for PANDAS, or some people see Dr. L in D.C. Also, your son probably needs a minimum of at least an antibiotic right now until appt, to see if he gets better - they like Augmentin or sometimes Azithromycin.

[reikiriki]

Do you think a Neurologist is going to be able to help with PANDAS, or do I need a referral to another type of specialist, such as Immunologist, or Rheumatologist?

[reikiriki]

At this time I am not able to take him to Chicago or DC. I could possibly take him to Salt Lake, Seattle, or Portland. (We are in Boise, Idaho)

[MomWithOCDSon]

Here is a list of doctors across the country who've helped us with PANDAS/PANs. It's a link within the Pinned Threads at the top of forum; you might find additional items there that would be helpful, as well:

 

http://latitudes.org/forums/index.php?showtopic=5023

 

From our personal experience as well as those of many folks here on the forum, anecdotally, I think it's unlikely that a standard neurologist (even a pediatric one) is going to necessarily be receptive to, let alone helpful regarding, PANDAS/PANS. Unfortunately, much of the traditional medical community remains "territorial" about what is neurological, what is psychological, what is immunological, etc., and thus many tend to scoff at developing fields of study and inquiry, such as PANDAS/PANs. Once again, for more feedback in that regard, you could search the forum with the term "Neurologist" in the search field and read about some others' experiences in that regard.

 

If there's no one specifically in the doctor's list above in your area, I would secondarily suggest you try an integrative medicine practice. Those folks tend to be more holistic and willing to think outside the box when it comes to what ails us, and not necessarily feel bound by the constraints of any individual specialty.

 

Good luck to you!

[reikiriki]

So today was finally my son's appointment with the Pediatric Neurologist. We've been waiting two months. The nurse told me they had heard of PANDAS, so for a few moments I was hopeful. The doctor ended up diagnosing my son with Tourette's Syndrome, anxiety, OCD, and ADD. He told me basically that the jury was still out on PANDAS, some believe it's a coincidence since children often have tics and they also often have strep exposure. He ignored the fact that I told him my son's symptoms were decreased while I had him on natural antibiotics, and that I've taken him off for a few days and the symptoms increased again. He stated it could be PANDAS, but it didn't really matter "because the treatment is the same, medication for tics." What???? He lost me there..... He recommended Clonipin and revisit in 2-3 weeks to see if he needed to adjust the dose.

Gahhhhhhhhhhhh!!!! So frustrating.

Edited January 15, 2016 by reikiriki

[WorriedDADNMOM]

You could go his route or you could demand a longer stint of zithromax. This would cover strep or mycoplasma. I can tell you the lowering of titers via zith made huge improvements for us.....but it was coupled with a ton of other things as MomwithOCDson points out. Integrative medicine, many of us feel, has been more beneficial to garnering the kind of results in terms of behavior, tics, immune function, allergy.....etc and the list could go on. For us......a 100-150 doc visit that garners NOTHING......no results, no plan, no anything is not worth paying. We just refused payment for a lack of service.

 

Best of luck to you!!

 

Let us know if you need anything else.