Pandas ?

[ISTY]

Hello all. My 10 yo son developed severe intrusive thoughts ocd a few months ago weeks after a strep infection. His pediatrician diagnosed him with Pandas and sent us to a specialist- he is on antibiotics and into inflammatory meds with Vit D supplement and omegas. They are doing a bunch of labs on him Monday. Have any of you experienced this as a trigger to OCD onset? It’s seems to be more common than thought. I’m hoping they are on the right track.

[LuvSun]

I myself do not have experience with this type of onset for OCD but have read and heard it is common to stem from strep

[HELLNOCD]

I’m really sorry to hear this, but I’m glad that it sounds like he has received a correct diagnosis. Pandas seems to be often dismissed. My onset was not from Pandas, but a dear sufferer whom I went through treatment with had Pandas and I can assure you it is very real. That’s great that he is seeing a specialist! Hopefully he can get on a correct medication and start ERP. Best of luck!

[ISTY in reply to HELLNOCD]

Thank you for the reply. I am hoping the medications work and he gets out of this.. it’s terrifying

[bpj6001]

We believe my daughter’s sudden, severe onset of contamination OCD at 12 was caused by PANS/PANDAS. Since your son had strep right before onset, it certainly sounds like PANDAS. I will caution you that PANDAS is primarily diagnosed by symptoms. You may not see anything conclusive in the test results. You are fortunate that the possibility of PANDAS was recognized so early in his case. It is often missed.

My best advice is to use all of the tools available to help your son. Some parents avoid “traditional” OCD treatment such as ERP and SSRI’s when they have a PANDAS diagnosis. If the antibiotics, supplements, etc. are not giving him relief from the OCD in a reasonable amount of time, I would advise you to pursue therapy and traditional OCD medication as well. It is often difficult to find qualified psychiatrists and therapists to treat adolescent OCD. You may want to find some options in your area and schedule appointments now since it can sometimes take months to be seen as a new patient. You can always cancel if the appointments are not needed.

I hope you find the help you need for your son.

[ISTY in reply to bpj6001]

Thank you so much for your kind and genuine reply. I have him set up with an ERP psychologist to battle the ocd while treating with the antibiotics and supplements recommended by the Pandas doc as well as mindfulness sessions at school and self esteem counseling once a week. Too much?? I just want my boy to be happy again.

[bpj6001 in reply to ISTY]

It sounds like you have a great plan in place! My only other advice would be to get genetic testing done if he needs SSRI’s in the future. I’ve seen a lot of parents give up on SSRI’s because of the trial and error needed to find the right medication and dosage. The genetic testing can help your doctor see if any particular medication should be avoided.

[trailwalker53]

HI........yes, PANDAS is definitely real! You are very fortunate to have found a doctor who recognized it! My daughter is 20 years old and suffers from OCD due to PANDAS since she was 3 years old. Unfortunately her doctors DID NOT recognize it! I believe antibiotics at the time would have saved her. You are doing the best thing for your son. It sounds like you are definitely on the right track! So important that you "caught" it early. There is so much the medical profession does not understand about pandas...there is talk now that not only strep, but other bacteria also trigger OCD. My daughter was bitten by a Lyme infected deer tick at 3 years old, and her OCD started 3 months later. I wish you and your son the best of luck.

[ISTY in reply to trailwalker53]

So sorry to hear this.. the more I read the more I realize Pandas is only recently been validated and there have been so many children undiagnosed who could have been helped.. it’s very tragically sad

I hope your daughter is doing well. I will keep you guys posted on his progress. He had 9 vials of blood taken this am.. we will see