Son Diagnosed with Pans

[Junesmith]

My son got a covid infection X mas and developed intrusive thoughts and anger overnight. He was put on Azrithomycin and it helped but didn't eliminate the obsessions or the anger. We are waiting on tick results. He had hight titers for herpes 6  (1 :20 H) and cytomegalovirus (1.70H.) We are also doing GI tests and others and waiting on results. He had unexplained constipation starting in Oct of this year. Wondering if anyone else here also had unexplained constipation before onset of PANS and what you did to test brain gut connection? We are on all sorts of supplements and probiotics. Nothing is taking the edge off. 

Thanks

[Atex]

My daughter was never tested or diagnosed with PANS, however, we noticed that a messed up digestive system correlated to OCD behavior (bad behavior in general) and tics.  Infections, allergies, and teeth coming in were all aggravating factors.  

We used supplements and probiotics in a targeted and sparingly way which let us find the food offenses.

 

[MaryAW]

My daughter had constipation prior to her PANS (back in 2007!). For some people, probiotics can make constipation worse, but they are needed for the gut health! Check with your doctor first, but you can try adding magnesium glycinate before bed (helps you sleep too). We use Metabolic Maintenance. Start with one 125 mg capsule and you can go up to two if needed. You can also add one capsule in the AM if needed. If he's not a pill taker, try an epsom salt bath. Also a jar of pears baby food or an apple or banana help a lot!

A lot of PANS doctors feel there is an underlying illness causing the PANS. Obviously for PANDAS, it's strep. Make sure to check for mold (RealTime urine test), Lyme and other coinfections (Igenex) and especially bartonella (Galaxy Diagnostics for this coinfection). Ask about candida too. If your son has symptoms of candida, he might need an OAT test to confirm. Also check IGg levels to be sure he can fight whatever he's fighting.

For a bad flare try ibuprofen. We used a lot of that during the early days! Eventually the azith will modulate the immune system and should calm things down. It worked for us. There is a lot more info out there now, so read up!

Three great books: Demystifying PANS/PANDAS by Dr. O'Hara, What to Do When Your Brain Gets Stuck: A Kid's Guide to Overcoming OCD, TOXIC by Dr. Nathan. All on Amazon.

Two great websites: Aspire.care and Pandas Physicians Network: pandasppn.org

Edited March 15 by MaryAW
added apple!

[Junesmith]

Some of his bloodwork came back and his has high IGM- 1:20 for Hunan Granlocytic Erlichiosis. Anyone have any success treating it? If so, what did you use?