Does this sound like PANDAS? Need Advice!

[mlgiganti]

My 6 y/o son has had OCD (on and off) and anxiety (pretty constant) going back to the age of 2. He has always been advanced in some areas (reading, math, etc.) but behind in others (riding his bike, swimming, etc. - mostly do to fears of falling, putting his face in the water, etc.). Not diagnosed on the autism spectrum - functions well at school, though is extremely shy at times and socially awkward. Has trouble verbalizing what he wants to say at times. He does not have any behavior issues, ADD, ADHD, etc. Well behaved and sweet/shy 99% of the time.

 

He has had a series of sore throats that precipitated increased OCD behaviors (when he was 4 he always felt like he had to pee - became obsessive about that and washing his hands). This lasted several months and then eased up. Every time we have had a throat culture completed it has been negative for strep. This past year (Feb) we went through horrible months where he was afraid to swallow. I had to make tons of smoothies, pureed vegetables and give him mostly soft foods in order to get his calories in. This was also after a sore throat (followed by another negative strep test). After several months his OCD/anxiety eased.

 

He has continual separation anxiety (wants my husband or I to sleep with him or be near him). Also says he has bad nightmares.

 

Another fact with all of this is that my husband has severe guttate psoriasis which is known to be triggered by strep. But he hasn't had strep throat. He has been flaring badly on and off this past year - at the same times my son has increased anxiety/OCD. They definitely coincide.

 

We have an appointment with his pediatrician for bloodwork on Monday. We are going to get his strep titers checked. Any other things we should ask to have done? I'm assuming my husband and I should also have our titers checked? Any advice is so greatly appreciated. Our doctor is very open-minded and smart, but I'm afraid she won't know exactly what to look for. Thanks!

 

[MomWithOCDSon]

Migiganti -- Yes, by all means, get all of your titers checked! Your son sounds SO much like mine at that age, it is spooky! My son, too, never had a positive culture, and unfortunately, that put us off following up or aggressively pursuing PANDAS at the time, especially since we didn't have a doctor who recognized it or even accepted it as a valid diagnosis.

 

Long story short, we didn't know to test antibodies/titers in the blood until a full 6 years later . . . 6 long years of dealing with the OCD, anxiety, separation issues, etc. that you've noted, even though he, too, had periods of relative health and "balance." Come to find out he really was fighting strep the whole time, as his titers were extremely elevated.

 

I would start with the bloodwork and then pursue treatment, assuming the bloodwork shows what it seems likely to show.

 

Good luck!

[PIK]

Yes, I had the swallowing fear too when the poop hit the fan. it very much does sound like PANDAS, but I wasn't 6, I was an adult.