non-PANDAS OCD symptoms

[sww817]

I just posted about my son's "normal" Cam number. If I look at his OCD and anxiety as non-PANDAS, does anyone have any information as to how these symptoms increase and change with illness. My son has definite periods of increased symptoms following illness (not only strep). For example, separation anxiety might go from a normal of a 2 for him to a 9. Same for emotional issues. I am trying to wrap my head around PANDAS vs non-PANDAS. It can be very confusing since it is obviously illness affected... but possible not true PANDAS. Verdict is still out... but I just want to cover all of my bases!

[dcmom]

swww187-

 

Why do you think your son is non pandas? Did you say you see Dr L? What does she think? Did your child have strep? Try antibiotics or steroids?

 

I can tell you this, I have one "classic pandas" daughter, age 6 and one "probable pandas" daughter, age 9.

 

I had the "probable" one's cunningham numbers done about 6 mos after positive strep culture and onset of symptoms. It was normal at 109 (I think). Her other numbers, however were very high. You have to remember this is a research study- nothing is conclusive. I emailed Dr C, and she agreed that her anti neural antibodies were high- and usually at that level there were symptoms. I can also tell you I had a happy, outgoing, confident, enthusiastic, energetic, girl who loved life, loved to eat and go out and try new things. Then, two weeks after my pandas daughter she came down with strep. Since that day (it took us a while to connect the dots, first attributed to stress of sick sibling, and growing up) she no longer had interest in her beloved after school activities, she had daily stomachaches, she never wanted to go out or do anything (to the point of panicing) she became very afraid of getting sick, throwing up, sick people, germs, ticks and lymes disease, she had temper tantrums, bouts of crying, and I would say overall depression.

 

Finally, we connected the dots and brought her to DrL. She thought it was a definite possibility that she was pandas, even with normal cam kinase. We treated her with a month of zithromax- no major change, we recently completed a month of steroids- MAJOR change. She is almost back to that old girl! She did GREAT on the steroids. She is happy, the anxiety is almost gone, stomach aches starting to subside, etc, etc.

 

So, what I am telling you is, sometimes you have to go with your mommy instinct. The cam kinase is not the end all, be all of pandas.

[thereishope]

I agree that the cam number is not the end all. It is important to remember that it is still in a research stage. Remind me, did your child begin with a sudden onset or was he more chronic? If it was sudden onset was it correlated with an infection?

[sww817]

My son is more "chronic". Really an alphabet kid that no one can quite put their finger on. We are working with Dr. L and she does not look at the cam as the only diagnostic tool. At our first appt she believed he was PANDAS. But he has had slow and steady progress over 2 months Augmentin and a 30 day steroid burst. Not dramatic change. So that is why she is not sure. His anti-neurals are elevated that apply to ocd. Now the question is regular OCD or Pandas? He has definite increases in symptoms but not only from strep. Last major exacerbation was from a normal virus. It was the worst we had ever seen him. That is why we went to see Dr. L. He has had an exacerbation from confirmed strep as well. So.... as has been the norm in his life, he is a hard one to peg!! I am thankful to be within driving distance of Dr. L because I do believe she looks at each individual and has so much experience. Right now we are continuing abx and trying zoloft. The zoloft might give us another indication of which way to go based on what I have read from other PANDAS parents on this board.

[faith]

sww,

what anti neurals are elevated that would indicate ocd? is that what you meant there? one of the thingies from the cunningham test? Is this the first time trying an SSRI (zoloft)? does your child have any tics? (we are kind of chronic here too, with ocd vamping up).

 

Are you indicating that Dr. L. is not sure your child is a PANDAS case, is that what you mean?

 

thanks

Faith

[sww817]

Yes from Cunningham test. The anti-lysoganglioside and the anti-tubulin were elevated. Dr L said that the research will probably show these elevations correlate to ocd. Again, Dr L is not sure if he is or is not Pandas. But she is looking more at his response to the abx and steroids. Which like I said, he has had slow and steady progress... nothing "dramatic".

 

This is our first time trying any ssri's. So we will see what happens. He only has slight tics when he is in an "exacerbation". No major tics.

[faith]

thanks, interesting.

our anti-lyso was 1280, way in the high range (normal range is 80-320). the Anti-tubulin was 100, (normal range was 250-1000). He has ocd for sure, in the way of repetitive erasing, going over letters, and other quirky type things, but those are the noticeable ones.

 

When we were there, I asked Dr. L. what that indicated, and she did not mention anything about ocd, she actually just said it meant he had a high amount of those antibodies, but they were not sure what it means yet. perhaps they are slowly compiling info that confirms that? I don't know, seems we all get conflicting info from these docs.

 

Did Dr. L. mention if the zoloft would be okay for tics? or you didn't discuss that?

 

Faith

[thereishope]

I can relay my own experience. Whne my son was recovering from a strep induced exacerbation he had a big setback. It ended up being allergies. Because it was so soon after strep and his body was not healed, that sent him over the edge again.

 

Is Dr L confident that the strep has been erradicated from his last infection? And do you chart when the exacerbation are strep vs non strep and how far apart they are? Finally, do you do thinks like strep tests on family members when he has a big exacerbation?

[sww817]

I think the research is coming together. It is not completely understood yet and so I think sometimes I pick up more on her sort of thinking out loud. I still am confused by the research because I was shocked his cam was so low... just based on obvious exacerbations following illness. His history looks very classic pandas and he still may be. It is just confusing because we did not get dramatic results following steroids and abx.

 

We didn't discuss the zoloft and tics since tics are really not an issue with him. Only slight when in an exacerbation and nothing anyone else would probably notice.

 

We are not sure we have gotten all of the strep. He does not culture positive in the throat and we had thought it was in his gut? Hard to know that for sure. But we are continuing abx for at least two more months. I now chart everything. Sometimes too much. But yes, I do note his illnesses and then the symptoms that go along with them. Last two MAJOR ones were six months apart (strep in March, viral in Sept)... but I am not sure when we were at a baseline for him. He is only 4.5 and we have been dealing with his issues for over two years. I am sure we have missed lots of things that are confused with normal development / delays.

 

We do not culture everyone. I think I am going to have my husbands titers run at his dr appt next week.

[thereishope]

My son was 5 when we were going through all of this so I know it can be hard to tell when they are actually back to baseline.

 

I would get strep tests for everyone, including adults. If your son responds to exposure as well and someone in the family has asymptomatic strep , it will affect recovery.

[sww817]

Well and then also his school has had so many cases of strep the past two years. They had to put new rules in place that a child had to have a negative strep test to get back into school because it seemed like someone always had it. I haven't seen anyone with it lately at school... but you still never know, I guess.