Need Some Opinions

[jdude]

I posted back in December about how well my son was doing (shouldn't have jinxed it I guess), then close to Christmas, the OCD symptoms started back up. Background: His original symptoms started last May...started with OCD, then went to tics. After a 20 day course of Augmentin (for sinus infection), the tics subsided significantly. In the meantime, we visited one neuro who didn't really think it was PANDAS despite ASO Titers being high (normal range for test was <100, his was 200). Went to only known PANDAS doc locally who felt it was PANDAS and put him on Zithro (started with 10 day course, then 1X week thereafter (2 250 MG every Sunday). Tics were significantly worse to the point of writhing on the floor at one point. Did a steroid burst. 2 weeks later no tics. Then one month later he was on another steroid for a severe asthma attack (10 day taper). It was during this time he was completely symptom free. This was about a 6 week period.

 

Around Christmas, he started with hand rinsing (not washing, he just briefly wets them constantly), this has now been replaced with constant touching of things..people, objects, and it seems to be a certain number of times (I counted, it changes). We were playing a board game the other day and he had to get up several times to "touch" certain objects. I also noticed his hand writing is significantly changed. He always had very neat printing and hand writing. Now he doesn't even attempt cursive and his writing has regressed...it's large, light, and very "young" looking. He does seems a little "hyper" and also has an obsession with talking "potty" talk and "sexual" thoughts..more along the lines of talking about body parts. Despite this, he sleeps quite well at night and does very well in school. It doesn't seem to be affecting his attention (his past three tests he got 100%). His teachers have not noticed anything unusual in class, so he's keeping his OCD in check there.

 

We recently did a 5 day course of Zithro...no change. Then a 5 day steriod burst two weeks ago. No change.

 

We have another appointment with his local PANDAS doc this Wednesday. I'm thinking 1), the prophylactic dose isn't enough 2) we ought to consider other underlying causes i.e. Lyme (we do have a lot of deer around here), and 3) perhaps it's time to visit one of the PANDAS experts. It would be about the same drive for us to visit Dr. K or Dr. Latimer. Any opinions on which would be better?

[peglem]

Well, I don't know who your local PANDAS doc is, but if you want to check lyme, it seems like dr.B is the one who does that.

[rockytop]

Dr Latimer is also checking lyme (igenex) from what I hear. We go to her for 3 of our kids so I am obviously biased:)

[aidansmom]

I am pretty sure that we also go to the same local PANDAS doctor as you Dr R., correct? (I recognize her prophylactic protocol). We were actually seeing her for neurology before the PANDAS diagnosis. She did not diagnose my son with PANDAS - a DAN doctor in the area did but she is knowledgeable about PANDAS. Now our case is very complicated and Dr. R. wasn't sure if Aidan had PANDAS since it didn't appear to be sudden onset (it was probably early onset as to why we didn't catch the sudden onset!) I felt the treatment that I was getting from her and our DAN doctor was not enough to help Aidan when we tried to stop the azith in Aug. and had a major exacerbation I felt I needed to go elsewhere. I first had a phone consult with Dr. K. but then I realized that I was really concerned about Aidan's immune system issues based on low IGG levels so we ended up taking him to Dr. B. since he was an immunologist (and he was covered on our insurance). After the first visit with Dr. B we got our IGenex Lyme results back which gave us a IGG positive by Igenex criteria. So, we ended up taking Aidan to a LLMD.

 

Anyway I met with Dr. R.regarding all of Dr. B's recommendations and the positive IGEnex testing and she is still on board with us and in fact she is willing to collaborate with the LLMD. So, I am thinking that maybe you should ask Dr. R. if she will order the Lyme test I would recommend doing it through IGenex. I think it is possible that she might do this.

 

Dr. R. was also very interested in the Cunningham test results that we had and seemed like she wanted to find out more about this.

 

Feel free to PM me with more questions about all the doctors that we have been to. I will PM you and give you my phone number as that may be easier.

 

Are you aware of a PANDAS support group in our area that I believe will be meeting on March 10th?

Elizabeth

[norcalmom]

I dont' know how old your child is, but Dr K will tell you that the older they get, the less likely they will remit completely with antibiotics. He also told us since my son was 11, the steroid burst was not an accurate diagnostic measure for him because he was older. He says it works better with younger kids that have not been sick as long.

 

If there is an underlying infection, it will adjust to the anitbiotics. My son did well intially on Azith. We found high does better - so we left him on that. Eventually, it didn't seem to be doing anything. We never did the steroid burst before the ivig with Dr K. He felt it may or may not work given my son's age. And I was glad - I only tried the steroids once early on. DS was starting to exacerbate, we did 2 days of steroids and on day 3 he got bad cold (which was probably what was making him exacerbate in the first place, immune system fighting it off). Had to stop steroids, and I think made the exacerbation worse. (defiantely made the cold worse!).

 

You may do some more digging for mycoplasma or other underlying infection. Switching up the antibiotics maybe more effective. We found DS had mycoplasma AFTER ivig (didn't do my due diligence and test prior to ivig - should have). Now have him on anitbiotic protocol for chronic mycoplasma. Doesn't mean we won't do another ivig if we need to, but ds is definately back sliding since last illness. Right now I'm seeing if the high does long term doxycycline will make some inroads. So far after 3 weeks, not really, but still early to tell.

[jdude]

Thanks everyone for your responses. My son is 10 (will be 11 in June). He did seem to respond to the 1st steriod burst, which is why I'm disappointed it didn't work this time. I do worry about the prolonged use of steriods, since he has also received them for asthma symptoms. So far it doesn't seem to be affecting his growth. I see Dr. R this Thursday. I believe he does have PANDAS as his relapses occured after known strep exposures. However, I figured it wouldn't hurt to rule out/or in as the case may be, Lyme , since that wouldn't be farfetched considering the deer population here, or other underlying infections.