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We’ve been diagnosed PANS and treating since August (Lyme, Babesia, Bartonella). Immediately after starting antibiotics, saw marked improvement in symptoms despite DS (7) not being currently in a flare. However, in December he began to flare. We had a two week reprieve in February when he got the flu and has been flaring since. This flare has very different symptoms from previous flares. DS is often unable to eat because he says food tastes wrong, thinks it’s dirty, contaminated or poisoned. This seems to be getting worse. He Is very anxious and often scared of everyday objects. Our world is getting smaller and smaller. My questions are, what else can we do apart from watch his symptoms worsen?  His not eating is getting worse, is there a way to stop this? What can I do? What do we do if it keeps getting worse? We see three different doctors- all of whom are not helpful. Is that because there isn’t anything that can be done? Please help! Do all kids get better at some point? I feel like this will never end.

Thank you.

Edited by mountainmom

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Mountainmom -- is your kid still on an antibiotic regimen?  Do you use other methods (supplements, OTC meds, etc.) for helping combat the inflammation from the flare?

Yes, kids DO get better!  Mine did.  But, unfortunately, even though the symptoms and behaviors may crop up virtually overnight, the healing is rarely, if ever, that fast.  It is a matter of time as well as a matter of treatment.

If your son is not currently taking antibiotics, get him some.  If he's taking them but you see no support or improvement via them, talk to the doctor(s) about switching them up.  Unfortunately, the flu being a virus, the antibiotics are not going to be of much help there.  Did you try anti-virals?  In the end, I would go after every anti-inflammatory intervention available to you as the immune response to the flu has probably inspired a lot of fresh inflammation that's behind the flaring behaviors.  Maybe talk to the docs about a short course of steroids, though I seem to recall those are frequently not recommended when lyme and co-infections are behind the PANs.  Otherwise, ibuprofen, omegas, etc.

And if you haven't considered it before, perhaps consider some therapy for your son, too, to help him combat the worries and anxiety that can creep in during and even following flares.  Unfortunately, these OCD behaviors/obsessions can dig in and become more pervasive over time if they're acquiesced to and given room to grow.  Medical treatment should help him be more effective at using the therapeutic techniques and strategies, but he'll need them in his arsenal to begin with.

Don't give up!  Relief will come and you're very fortunate to have these doctors on your team as some folks have trouble finding even one doctor who'll help!

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Is your son still being treated for Lyme & co? Are you working with an LLMD? My DD suffered from Pans-induced anorexia and it was terrifying. For long term healing, I'd say you need a combo of antibiotics, rotated periodically. For the near term, you need to treat this for what it is - life-threatening, regardless of trigger/cause. Google the "maudsley approach" to treating eating disorders. It may be OCD that's keeping your son from eating, but his body needs calories or you end up with a cascade of physical health problems and mental health problems.

For my DD, it took a combo of 2 antibiotics plus a month long steroid taper (starting at 60mg for a week, then 45 mg, then 30mg, then 15 mg per week). Within 36 hrs of starting this, she willing sat to eat for the first time in months.

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Thanks for your replies. My son is currently on antibiotics. I think that we need to switch them- as they don't appear to be helping. MomwithOCDSon, would the flu still be active in his system? We did anti-virals right away when he the flu was active. Our Llmd still feels the Bartonella is active- based on his symptoms- though I don't really understand how they can tell. I'm going to talk to our Llmd about steroids. I have heard mixed things about steroids when Lyme is a factor....  We are on our third therapist and haven't found any to be helpful at all thus far.  I'm hoping our new one is better able to help as she works with a lot of PANS kids. It's just so frustrating. We are almost three months from when he had the flu and he is getting worse! He can't go to sleep. He's afraid of his blankets, his bed, his pillow, the floor. 

LNN, I will take a look at the Maudsley Approach- thank you.

So grateful for this board and all of you. 

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Is there any obvious infection?  Do his tonsils look even a little suspicious, how are his sinuses?

Have you recently tried ibuprofen (for a limited time, per directions on the bottle) just to take the edge off a flare and maybe get some food into him (if it helps your child - some it doesn't)>

Another simple near-term thing you can do (if you can get liquid into him) is baking soda mixed with water.  Lyme folks have been using the equivalent in alka selzer for years and reporting some relief from symptoms, and finally now some research has shown how/why this could work for autoimmune diseases: https://www.sciencedaily.com/releases/2018/04/180425093745.htm

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bobh- there isn't an obvious infection. He doesn't seem sick. I think his sinuses are fine (maybe it's the Bartonella?). We are using Aleve around the clock. It does take the edge off. Thank you for sharing the link to the research on baking soda. I will see if he will tolerate that. 

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Mountainmom,

My son had Lyme/Pandas and a month-long steroid taper helped him immensely twice, and did nothing once, over the 5 years he battled his illness. Our LLMD isn't a huge fan of prednisone but does recognize it has it's place for Pandas kids.

Like your son, my daughter was in her darkest days yet had no definitive infections. She did have Marcons - you may want to ask about that. I may never know what exactly she was fighting, but I do know that a combo of bactrim and zith and prednisone saved her. Low dose naltrexone was also helpful. She has struggled immensely from mold issues - mold in her elementary school and now her Jr High. Prednisone isn't recommended for mold situations either, but desperate times called for desperate measures. She recently started Zoloft and although I've tried everything I could to avoid it, she does get relief and is glad she's on it. Inositol, Ashwagandha, Bacopa and looking into how your genetics affects methylation are also options for reducing anxiety.

Cognitive behavior therapy wasn't hugely helpful for my daughter, but now that she's a little older, she's having great success with EMDR. So something to keep in mind as your son gets older, if he continues to struggle with anxiety.

I know it feels like this will never end - and it is a grueling journey. But my son "grew up with" MomWithOCDSon's son - and he's now the healthy, obnoxious teenager I always hoped for, while her son is enjoying college. My daughter's journey has been harder and more complicated, but she too is making progress. So don't lose hope. Our kids do get better. But first they need to eat :(

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