Update: Just starting down the PANDAS path

[Seansmom]

We got the psychologist report yesterday. Her diagnosis is PANDAS but to ensure we get assistance through the schools she also diagnosed ADHD, Asperger's, and generalized anxiety.

 

After school we went to the ID. While we were in the doc's office, the ADHD went crazy and he started tantruming. He was acting about as bad as he gets.

 

This ID has treated 3 or 4 PANDAS cases. He does not see signs of Asperger's. He ordered blood work which we will be getting done today. I had to call him back though and ask why he hadn't checked off DNaseB antibodies. It was apparently an oversight. THANK YOU ALL FOR WRITING ABOUT THIS. If it hadn't been for you I might not have caught it. I would hate to have to go through the ordeal of bloodwork twice due to an oversight. He is also checking thyroid, metabolics, lupus, and lyme.

 

If the titers are high the ID will prescribe amoxicillen. He also said to start fish oil. He also suggested a psychiatric evaluation and suggested medication to control the hyperactivity. We made it clear that we are not willing to consider more aggressive medications until we see what happens with antibiotics. When I asked about plasma exchange and IVIG he said he didn't know about them and we would have to seek out someone else - maybe Dr. Murphy could help.

 

Overall, he didn't evoke a whole lot of confidence from me.

 

I decided I want to move forward with occupational, speech, cognitive behavior, and maybe physical therapies. I had to make a bunch of phone calls to find a place that offers pediatric services. We'll be getting the evals next week.

 

A note about school - I think the classroom teacher has pretty much given up on him. I think the Vice Principal was viewing it strictly as a disciplinary issue - but seems to have changed gears now that I've explained to her what PANDAS is and how it affects him. Now we're waiting for the district to approve the Psychologist's diagnosis and schedule placement meetings.

 

I wish a good day for everyone!

[P_Mom]

Hi......

 

I am glad you received a proper diagnosis...what a releif..huh?

 

 

You posted "if his titers are high..he will prescribe Amox."

 

Be careful with this.....if your child has PANDAS, antibiotics are almost always necessary to help control symptoms and prevent episodes, even if titers are negative!!!!

 

 

Please don't let the doc determine whether your child has PANDAS, and whether he treats with antibiotics, based on titers!!

 

kelly

[EAMom]

I will ditto Kelly's response. My dd had full blown psychotic PANDAS OCD (including Anorexia Nervosa for which she was hospitalized for b/c of acute food refusal/malnutrition). Her titers were low (both 2 and 3 mo. after her initial strep exposure/infection) even though her PANDAS symptoms were severe and her throat culture was still positive. Some kids just don't make a lot of titer!

 

Re throat cultures: I would also rec. culturing family members (esp. siblings) to check for strep carriers.

 

Also, if behavior doesn't improve on Amoxicillin, you may need to try something stronger like Keflex or Azithromycin (which worked for my dd). Sometimes the strep goes intracellular and Amoxicillin can't "get at it". (There are some postings/articles on Amoxicillin failure in strep throat on this board.)

[michele]

Dr. K said omnicef and azith would be the same as far as treating PANDAS symptoms. Would you have Buster look into this? My son is doing worse lately even on Omnicef and I would like a trial of Azith. How have others here lately been able to get their Dr's to try azith?

 

Michele

I will ditto Kelly's response. My dd had full blown psychotic PANDAS OCD (including Anorexia Nervosa for which she was hospitalized for b/c of acute food refusal/malnutrition). Her titers were low (both 2 and 3 mo. after her initial strep exposure/infection) even though her PANDAS symptoms were severe and her throat culture was still positive. Some kids just don't make a lot of titer!

 

Re throat cultures: I would also rec. culturing family members (esp. siblings) to check for strep carriers.

 

Also, if behavior doesn't improve on Amoxicillin, you may need to try something stronger like Keflex or Azithromycin (which worked for my dd). Sometimes the strep goes intracellular and Amoxicillin can't "get at it". (There are some postings/articles on Amoxicillin failure in strep throat on this board.)

[EAMom]

Dr. K said omnicef and azith would be the same as far as treating PANDAS symptoms. Would you have Buster look into this? My son is doing worse lately even on Omnicef and I would like a trial of Azith. How have others here lately been able to get their Dr's to try azith?

 

Michele,

Omnicef is a cephalosporin. According to this study http://www.journals.uchicago.edu/doi/abs/10.1086/508773 by Ed Kaplan (WHO strep expert), cephalosporins are better than Penicillin for getting intracelllular strep, but not as good as macrolides (like Azithromycin). Here is a quote from the study:

 

Cephalothin, a cephalosporin, and clindamycin were more effective in killing ingested GAS than was penicillin, but they were less effective than erythromycin or azithromycin.

 

Note: ingested GAS is intracellular strep.

 

Why don't you ask your docs what the harm would be in trying a trial of Azithromycin for 1 mo.? There's a lot of benefit if your son improves. I really don't see the downside, esp. if he's already on Omnicef long term and symptoms aren't being controlled, it just makes sense to me to try something else. Why keep going with what isn't working when there is another option that has worked for others with PANDAS?

 

Certainly it was our personal experience that Azithromycin worked well to control PANDAS symtpoms but Amoxicillin, Augmentin, and a cephalosporin didn't.

 

Some strains of strep can be resistant to Azithromycin, so it may not work for everyone. But, it's certainly worth a try if what you are on doesn't seem to be working.