low or normal antibody?

[ibcdbwc]

Hi Everyone,

 

To recap ds has had strep in the distant past-- both perianal and throat. First signs of OCD at age 5--then again at age 7 and now again at age 10. Very episodic with OCD. Hyperactivity more prevalent over the years. December we noticed that ds has marked increase in rage and hyperactivity. Our younger son tested positive for strep 2 weeks prior. but my ds's cltx was negative and his ASO was 50.8 (0-200 normal) ( this was drawn in Jan..-- after the episode was already over). Now, the last two weeks-- rapid onset "just right" OCD. Again, younger son tested positive for strep (with symptoms of fever...). But AGAIN my Ds was tested during the episode this time and his throat culture was negative and ASO is 48. AntiDNase <1:60.

 

Dr. K email consult thinks ds may have started all of this at age 5. Of course-- our pediatrician wants documented current strep associated with episode since the NIMH criteria require this. I know from reading that the titres and cultures do not necessarily rule PANDAS out. But how do I talk to my peditarician about this? Are the titres considered "low" or "normal."

 

We have phone consult with Dr. K soon and IG panel pending. In the meantime I feel like I am going crazy myself! While I don't want my son to have any disorder--- I found myself kind of wanting the strep or titres to come back indicating a connection.

[EAMom]

Of course-- our pediatrician wants documented current strep associated with episode since the NIMH criteria require this. I know from reading that the titres and cultures do not necessarily rule PANDAS out. But how do I talk to my peditarician about this? Are the titres considered "low" or "normal."

 

I don't think you need documented CURRENT strep associated with each episode.

 

However, lots of PANDAS kids react to strep exposure so the fact that your child reacted after a sibling got strep is telling. I don't know of a paper that states this however. Maybe someone else has one?

 

Can you seen this link? (FB) http://www.facebook.com/home.php#!/topic.php?uid=332059986829&topic=15903 points 1, 2, and 3 might be helpful.

 

Also, this quote is from Swedo's first 50 cases paper should be helpful http://intramural.nimh.nih.gov/pdn/pubs/pub-3.pdf . It explains that PANDAS kids can also react to non-strep triggers after the wheels of autoimmunity are set in motion with PANDAS.

 

The possibility that pathogens other than GABHS

can induce neuropsychiatric symptoms is suggested by

the presence of non-GABHS-related exacerbations in

the children with PANDAS, as has been reported for

Sydenham’s chorea (23). It is postulated that GABHS

needs to be the initial autoimmunity-inciting event but

that subsequent symptom exacerbations can be triggered

by viruses, other bacteria, or noninfectious immunologic

responses..

Edited May 10, 2011 by EAMom

[nicklemama]

My DS has normal to low titers ASO and antiDNAse. His last DNase was <1:60 and his ASO was <25 IU/ML. His mycoplasma titers are normal too. I don't know how to get your pediatrician to understand. Ours didn't. I actually didn't spend too much time trying to convince the ped since my DS was so sick and needed help and we'd wasted so much time already.

 

My DS has never had a documented case of strep. He's had ear infections and I believe his very first episode was after an ear infection when he was barely 3. He had some unusual irritibility and tantruming for about a week while on abx for the ear infection. It went away. Next episode was at age 5, after ear infection dx. Irritibility and defiance lasted a few months but it wasn't severe, just out of his normal. The big one hit at age 5y9m after the FluMist. We had no idea what is was and it took a yr for diagnosis.

 

Dr T told us it was PANDAS and DS just had IVIG w/ Dr K. I don't need his pediatrician to believe. My son couldn't wait for that and while I understand why you'd like to get the ped on board, I wouldn't waste too much time on it. He/she may never come around.

 

DS's kind of believes now, but she's not going to do any treating. The only thing I hope for is to use my DS as a teacher so that she might recognize this in any current or future patients.

[ibcdbwc]

Thank you both. I agree, I don't 'need' our doc to believe-- but it would be nice-- especially since I'm questioning myself all the time :-) I'm fond of black and white-- and hate gray! I suppose after I talk with Dr. K, I'll feel better. And maybe an antbx trial or steroid burst will help us piece the puzzle together. EAmom-- thanks for the links!!!-- very helpful. Nicklemama- did your son have a good response to IVIG? This forum has been so supportive. Thanks to all!

[Dedee]

First of all, you are not going crazy because you want to find the cause of your childs condition. We have all experienced that feeling. Many PANDAS kids do not have high titers. Don't let that discourage you. My daughter has only had strep once that I remember. She flared in November after getting the flu mist. Even then her strep titers were only slightly elevated. Not enough to impress anyone but they did agree it was probably PANDAS. After months and many tests later we found that her issue was chronic mycoplasma. Her levels were very high on that and all the doctors took notice then. So just because his strep titers aren't screaming does not mean this is not an infection induced issue. You are on the right track by going straight to a PANDAS specialist. Don't fool around with anyone else. They DO NOT understand this illness and only confuse things. As long as you stay with someone who specializes in this field you will get the help you need. Also, stick around here for the emotional support you will need on this journey. Best of luck.

 

Dedee

[nicklemama]

bcdbwc- I questioned myself many times and doubted myself many times. I just couldn't believe my DS could have PANDAS w/out strep. He did very well on abx. We saw dramatic improvements. Unfortunately, he's had PANDAS too long and abx only got him so far along. He's only 4 days post IVIG, so I cannot comment on whether its working or not. He's not worse.