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What is going on? New symptoms.... Please help.


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Hi, I've posted before about my son, 7 who has had PANS since 4 (Lyme, Bartonella, etc.,) but was only diagnosed this August. I'm hoping if I share someone will have some insight. This board is so full of knowledgeable, kind people.

My son has always flared in the winter months, usually Jan-May. In the past his symptoms were ADHD, mild tics, movement issues, mild OCD, difficulty remember things, what looked like absence seizures, severe anxiety, panic attacks, hoarding, depression, intrusive thoughts, separation anxiety and severe sleep issues. However, this summer, though he did improve in some ways (his anxiety improved), he never got back to his baseline. In August, he tested positive for Lyme & co and was diagnosed with PANS and we began treatment with antibiotics and supplements. We also took him off gluten at the urging of our Llmd after genetic test revealed he had a good chance of being Celiac.

We saw immediate improvement. For the first time in years, my boy was back. It was amazing, but, short-lived. In November things were a bit bumpy and then December 1st he had a big flare that continued through most of February. However, symptoms were different then they'd been in the past. He had a lot more OCD which mostly looked like tapping his body and walls, etc. He was fairly anxious, though not as severe as in the past (no panic attacks). 

Our doctor took him off all medication for two weeks to see if it would help in January. It didn't help. Things got worse and so he was put on new antibiotics (Amoxcicillyn and Bactrim). They seemed to help. He had two great weeks in February and things seemed to be better. He was happy again, playing with friends, etc. 

Then about a week ago, panic attacks began again and now, suddenly, he won't drink anything unless I take a sip first. If I cook, he wants to watch me cook to make sure it will be "safe" for him to eat. He won't eat if he accidentally touches his food with his fingers because they might have touched his hair or the floor. He's never had any issues with contamination/eating issues before. This has all happened so quickly, and I'm so scared it is going to get worse. 

Two and a half weeks before this most recent flare began, he had the flu. Could that be the cause of this- or is it too long in the past to be the cause? Why would this flare be so different from past flares (he still seems mostly calm and happy)? Why is he still flaring? Shouldn't he be getting better with a diagnosis and prophylactic antibiotics?

Please tell me if there is something I missing.  

Feeling desperate and overwhelmed. Thank you.

Edited by mountainmom
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I'm so sorry you're going through this and, unfortunately, I'm not sure there's any solid answer to be offered.  Yes, a new infection (whether viral or bacterial) could set your son back; all infections cause inflammation that may be at the heart of this immune dysfunction, so anything that further tips that scale -- even allergies -- can send our kids into a flare or exacerbate the existing flare or condition.  There are a number of theories behind this, but inflammation and therefore increased porosity of the blood brain barrier (BBB) is one that resonates with me as this increases the likelihood that infections and antibodies that would normally be kept out of the brain space manage to get through.  There's also the possibility that the inflammation in both the brain and the gut cause dysfunction in the neuro-transmitters and/or receptor sites, impacting balance of substances like glutamate, serotonin and dopamine which are components of OCD, executive functioning, etc.

To some extent, it may just be a matter of time, unfortunately, while he stays with the antibiotics.  You might try adding ibuprofen and other anti-inflammatory supplements and foods to see if that helps.  But if you don't see things die down gradually as the days go on, it might be that he needs a different kind of medical intervention:  a different antibiotic, steroids, etc.

Also, I might suggest that you seek out a therapist to assist him and your whole family with the increased OCD behaviors.  It's an unfortunate symptomology of OCD that it tends to increase and expand its "territory" the longer it has a toe-hold, and when it is accommodated and given room to breathe, that can be even more the case.  By developing tools and strategies for pushing back at those obsessions and compulsions, your DS and your whole family can help keep the OCD in check during those flares, hopefully preventing it from becoming a more pervasive and impactful behavior set.

In short, I would advocate for a multi-pronged approach to contending with the PANDAS/PANS.  All the best!

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That is good advice above.  The recent flu does look like a culprit.

Towards understanding and reducing your anxiety, I have found that symptoms can morph quite a bit over time.  Brand new things come up that weren't there in the previous year or two, and a behavior that used to be common can completely vanish.  This may be different bugs, or possibly, the immune system response changing - who knows.

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Thank you both for your responses. My DS does see a therapist, but unfortunately haven't found them to be at all helpful thus far. My son really doesn't like to talk about his OCD and anxiety. However, most of our CBT work has been around anxiety-maybe it will be more helpful when it comes to the OCD. Can you recommend a good book for parents on OCD? It seems more helpful sometimes for me to read and try things at home than try via our therapist. 

I'm so grateful for your sharing your experiences. 

Thank you.

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