PANDAS OCD behaviors after strep is gone?

[PANDAS mom in Nebraska]

I am new to this forum and have a question for any "seasoned" PANDAS parents. My daughter McKenna who is now 4 1/2, had the sudden OCD behaviors start in July (2 months after a fever illness in May). We self referred her to a local behavioral psychologist who was awesome, and who thought she just had OCD. As I started doing my research, and read about PANDAS, I requested that she get tested. In September she was diagnosed, with a positive throat culture and elevated strep titers (one was normal, and one was 7 times above normal). She was put on 10 days of antibiotics (Amoxicillin). By the end, of 2 weeks, all behaviors were GONE!! She was set up for a strep retest 4 weeks post treatment, and the week prior some behaviors resurfaced. At her retest, sure enough she was still positive again. PANDAS full fledged resurfaced as she was then put on augmentin x10 days. Behaviors again vanished about a week past the end of the 10 day antibiotic. Great! Except 2 weeks later, behaviors resurfaced and have been very prevalent for the last 5-6 weeks. We have taken her in twice (Once in the middle of November, and once this week). Both times, her throat cultures came back negative. This week my pediatrician decided to recheck her ASO and anti-Dnase titer. Both came back within normal range (her numbers were at the very high end of normal). The behaviors continue. SO....at this point, do I just accept that she now has full blown OCD, or is this still PANDAS related? For the people that have taken their kids to pediatric neurologists, do they help when strep has now been ruled out? I don't know where to go from here, and am feeling really discouraged as I thought those titers would be elevated with what we are seeing behavior wise. Please advise!!!

[peglem]

I don't think strep has been ruled out...You can have anal strep and vaginal strep as well. (these types generally do not cause ASO titer increases) Furthermore there are a few parents on this board who saw behavioral exacerbations when their PANDAS children were only exposed to strep (from an asymptomatic sibling who tested positive).

 

Please do not base treatment on titer levels. They are only indicative, if elevated, of a past strep infection. Most doctors do not know how to interpret ASO/AntiDnase results. If your child improved dramatically on ABX- why not continue the abx for longer- to prevent flares from exposure? It certainly safer than psych meds.

[sf_mom]

Strep can also be intercellular. From her history, it is obvious she had a very difficult strain to eradicate and may still have cross-reactive antibodies lingering hence OCD. I would definitely see an immunologist and test WBC, RBC, ESR, CRP, Strep Antibody Titers, IgG Subclass to determine if she is still fighting an underlying infection or has a depleted immune system.

 

AND read, read, read and read....... historical posts you'll discover a lot of information that will help guide you through your next steps/treatment to rid her entirely of OCD.

 

Sounds like she is definitely PANDAS and expect/demand 100% recovery for your child.

[dcmom]

Hi pandas mom- Your daughter needs to be on longer term antibiotics. If amoxicillin is working, stick with it for now. I would suggest daily abx for a few months, then if you like, slowly wean her to a prophylactic dose.

 

Make sure to do probiotics as well.

 

I do need to tell you, most kids on this forum end up needing long term daily antibiotics.

 

You need to find a doc who knows pandas....Email Diana at pandasnetwork.org and Beth Maloney of Saving Sammy.net to get suggestions in your area.

[thereishope]

Is her OCD better than what is was prior to antibiotics? I agree that longer term antibiotics are needed. Also, with my son even though he was negative on follow up strep tests, it still took him longer to fully recover. Finally, with his last exacerbation, he had residual OCd we had to tackle. I'm not sure where that stems form, whether the brain eventually learned it out of habit or what. But right now he is OCD free.

 

He never went on SSRI's either. Be cautious with those and PANDAS.

 

You can also try Ibuprofen and that may help ease symptoms.

[Joan Pandas Mom]

I recently took my son off SSRI's. He has been on them since the start of this 6 years ago. We have tried all. None of them work. I am curious to see if they did possibly make his PANDAS worse.[

 

quote name=Vickie' date='Dec 12 2009, 08:45 PM' post='48421]

Is her OCD better than what is was prior to antibiotics? I agree that longer term antibiotics are needed. Also, with my son even though he was negative on follow up strep tests, it still took him longer to fully recover. Finally, with his last exacerbation, he had residual OCd we had to tackle. I'm not sure where that stems form, whether the brain eventually learned it out of habit or what. But right now he is OCD free.

 

He never went on SSRI's either. Be cautious with those and PANDAS.

 

You can also try Ibuprofen and that may help ease symptoms.

[EAMom]

Once the "wheels of PANDAS" are set in motion, many parents find they need to keep there kids on long term full-strength antibiotics (azithromycin is what worked best for my dd--she has been on 250mg/day daily since June 08).

 

Intracellular strep may be the reason for this need for long term abs. Like peglem said, I would also recommend checking family members for strep (carriers)...our younger dd is an assymptomatic carrier and our pandas dd reacts when sister cultures positive.

 

Also, keeping your child on abs is important to prevent future episodes of pandas (which will likely be more severe). The rheumatologist we saw said pandas is like "rheumatic fever of the brain" (kids with rheumatic fever stay on abs until age 25 --or did they up that?).

 

If longterm full strength antibiotics aren't effective enough...the next step may be adding on steroids, IVIG, and/or PEX.

 

This thread of FAQ may be helpful:

http://www.latitudes.org/forums/index.php?showtopic=6142

 

Here is another thread on helpful docs:

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

[smartyjones]

She was put on 10 days of antibiotics (Amoxicillin). By the end, of 2 weeks, all behaviors were GONE!! . . . PANDAS full fledged resurfaced as she was then put on augmentin x10 days. Behaviors again vanished about a week past the end of the 10 day antibiotic. Great! Except 2 weeks later, behaviors resurfaced and have been very prevalent for the last 5-6 weeks.

 

 

it seems to me that if she is seeing such dramatic results with the abx, that is proof that it is pandas-related and not solely OCD.

[mama2alex]

Welcome to the forum! I'm sorry your family is going through this, but you've found the right place for support and information. I would recommend you see an immunologist since your daughter is having such a hard time getting rid of strep. Many PANDAS kids are found to have immune deficiencies, and if so are often prescribed IVIG which helps the immune deficiency AND the PANDAS.

 

Dr. Roger Kobayashi, an immunologist in Omaha, is treating at least one child whose mom is on this forum. We met with him at UCLA (he's a clinical professor there) and he's a very nice guy. I think he would have helped us, but in our case he deferred to his more senior colleague at UCLA and we did not receive treatment through them. Ask him to do a full work-up on your daughter and let him know about the PANDAS. And I wouldn't ask him if she has PANDAS, I would tell him she does. If her OCD has disappeared several times on antibiotics, it is certainly caused by bacteria.

 

Don't get discouraged, you will get her the help she needs!

[T_Mom]

You have gotten some great advice here-- I agree that if your d has had a good reaction to Amoxicillan then it should be tried again--full strength, longer term. I say that because it worked for us.

 

When our dd had "crazy, incapacitating" OCD/ticcing show up, and it went away with full strength Amox....I only wish I had figured it out sooner! In our case full strength amoxicillan for about a year now (12 years old now) -- and two steroid treatments, essentially via Dr. K's protocol (www.webpediatrics.com) ( -- and he does phone consults) We are thankful for very good results.

 

www.pandasnetwork.net (or .org?)

Good resource for info. as well--All the best,

T.Mom