I HAVE ALOT OF QUESTIONS H

[nomoz]

Hello, all.

 

I am continuing to see doctors to try and confirm PANDAS in my 8 year old daughter. So far, evidence of strep/mycoplasma/lyme have all been detected and biaxin has successfully alleviated symptoms (while on it).

Currently, on no meds, rage symptoms along with strong verbal obsenities and ocd like symptoms are present. My daughter does attend school and does well in that environment, but getting her there is nothing short of an all out struggle.

Dr. T (a neurologist in NJ affiliated with NIH) confirmed a lyme test last year, with IGM's 2 out of 3 bands present, and IGG's 3 of 10 present. Recently, we saw a rheumatologist (her ANA titers are always high and speckled) who suggested the lyme test was NOT positive, since the IGG's were negative. The test was considered a positive one, and sent the the PA department of health as such. Does anyone know what is going on here?

Also, my daughter tested a 170 on the Cunningham test along with having an antidopamine level of 4000. After studying the graphs of the research done on this test, does anyone know how this compares to Tourettes Syndrome? The rheumatologist suggested Tourettes would increase in severity with strep or other illness. So, does my daughter have Tourettes or PANDAS?? I believe PANDAS, my husband believes Tourettes.

Most importantly is the fact that she improved tremendously while on biaxin. Would this be the case in Tourettes alone??

And finally, I'm just going to vent a bit. We recently saw a local therapist who suggested we get a diagnosis before he treated her. According to a very credible neurologist, don't we have one? Well, he wanted us to see a local psychiatrist. Upon first and only appointment, the psychiatrist agreed PANDAS a distinct probable diagnosis, but felt we should stick with our neurologist. Our pediatrician doesn't want to continually run bloodwork b/c of cost and really won't work with the neurologist. I met with another pediatrician who suggested I see an infectious disease doctor who then suggested we see a rheumatologist who then suggested we see someone at NIH. Dr. T is affiliated with Dr. Swedo. We are ALREADY seeing someone affiliated with NIH. I am so frustrated right now with my insurance and these docs, I could scream. And right now my daughter is cursing, biting herself and screaming at her 4 year old sister (who has a fever and is really sick, poor kid.)

I JUST NEED SOME HELP.

If anyone could answer the above questions, especially regarding the lyme, please advise.

Thanks all.

Noelle

[kimballot]

HI Noelle -

 

I think we can all share in your frustration!

 

It sounds to me like your daughter has shown an increase in symptoms with infection. Yes, kids with tourette can have an increase in symptoms with stressors, such as infection. However, when Dr. Cunningham did her research she found kids with tic disorders and OCD who were healthy did NOT have elevated cam Kinase levels. Kids with PANDAS did have elevated cam kinase (and your daughter's levels are quite high).

 

Since that 2006 publication, Dr. Cunningham has (reportedly) found elevated cam kinase with lyme as well, though this has not yet been published.

 

Your daughter has some pretty impressive evidence of lyme disease. I am not a lyme expert, but from what I read the risk of a false NEGAGTIVE with lyme is much higher than the risk of a false POSITIVE, so I think your daughter's lyme results are concerning.

 

Dr. T is certainly collegial with Dr. Swedo, but I do not believe Dr. T is on the current NIMH PANDAS IVIG study team.

 

Kids with PANDAS have exacerbations of psychiatric symptoms due to infection (usually strep, mycoplasma or lyme - but it could be other things) or other inflammation (ex: allergies).

 

It is important to get the infections cleared and keep them clear.

 

If your daughter has lyme, she will need a special combination of drugs to clear it.

 

I do not know where you live, but I would consider having her seen by a lyme doctor. Unfortunately, they are expensive and often not covered by insurance. Folks on the lyme board can help you to find one. Also, the ILADS website can send you a list of lyme doctors that are closest to you. (http://www.ilads.org/).

 

Once the lyme and any other infections are treated, you can work with a PANDAS doctor keep your child healthy to stop any autoimmune responses that are continuing.

 

 

Best wishes!

[T_Mom]

Hello, all.

 

I am continuing to see doctors to try and confirm PANDAS in my 8 year old daughter. So far, evidence of strep/mycoplasma/lyme have all been detected and biaxin has successfully alleviated symptoms (while on it).

Currently, on no meds, rage symptoms along with strong verbal obsenities and ocd like symptoms are present. My daughter does attend school and does well in that environment, but getting her there is nothing short of an all out struggle.

Dr. T (a neurologist in NJ affiliated with NIH) confirmed a lyme test last year, with IGM's 2 out of 3 bands present, and IGG's 3 of 10 present. Recently, we saw a rheumatologist (her ANA titers are always high and speckled) who suggested the lyme test was NOT positive, since the IGG's were negative. The test was considered a positive one, and sent the the PA department of health as such. Does anyone know what is going on here?

Also, my daughter tested a 170 on the Cunningham test along with having an antidopamine level of 4000. After studying the graphs of the research done on this test, does anyone know how this compares to Tourettes Syndrome? The rheumatologist suggested Tourettes would increase in severity with strep or other illness. So, does my daughter have Tourettes or PANDAS?? I believe PANDAS, my husband believes Tourettes.

Most importantly is the fact that she improved tremendously while on biaxin. Would this be the case in Tourettes alone??

And finally, I'm just going to vent a bit. We recently saw a local therapist who suggested we get a diagnosis before he treated her. According to a very credible neurologist, don't we have one? Well, he wanted us to see a local psychiatrist. Upon first and only appointment, the psychiatrist agreed PANDAS a distinct probable diagnosis, but felt we should stick with our neurologist. Our pediatrician doesn't want to continually run bloodwork b/c of cost and really won't work with the neurologist. I met with another pediatrician who suggested I see an infectious disease doctor who then suggested we see a rheumatologist who then suggested we see someone at NIH. Dr. T is affiliated with Dr. Swedo. We are ALREADY seeing someone affiliated with NIH. I am so frustrated right now with my insurance and these docs, I could scream. And right now my daughter is cursing, biting herself and screaming at her 4 year old sister (who has a fever and is really sick, poor kid.)

I JUST NEED SOME HELP.

If anyone could answer the above questions, especially regarding the lyme, please advise.

Thanks all.

Noelle

 

 

Hi Noelle, I am so sorry you are going through this--

The one thing that stands out to me in your note is, "...that she improved tremendously while on biaxin..." That seems to be key in your understanding of what has helped her. I would agree.

 

Also, now that she is having symptoms I would take her to a neurologist who can fully assess the tourettes/PANDAS issues.

 

Also, the Cam Kinase and blood levels are high and appear to indicate a positive Ps diagnosis. I would suggest seeing Dr L -- especially if it is within driving distance for you.

 

Take care--and hope it gets cleared soon.

Edited April 16, 2011 by T.Mom

[nomoz]

Thank you for your responses.

 

I do have a phone consult with Dr. T this evening.

 

The lyme really has thrown me for a loop, as I am getting literally different info from each doc about it.

 

The info on the Cunningham test is helpful, as I was unaware of OCD/tic like behavior alone NOT having elevation in Cam Kinase levels.

 

I will ask Dr. T if he feels any other docs (in the loop) can help further. He mentioned a Dr. Fallon, who is a lyme specialist. I tried and failed to get hold of him.

 

We live in NE Pennsylvania, and I do often wonder if allergies play a significant role, since fall and spring seem to be peak exacerbation times.

 

As I stated previously, it's not I who needs convincing of this illness, but rather, my very skeptical husband. To be on opposing sides in such a stressful time is just too much for this whole family...

 

Thanks for your good wishes and I'll post after our consult with Dr. T.

 

Noelle