Fifth year of PANS, now what?

[MountainMom]

My son (8yrs old) is beginning his fifth year with PANS (Lyme, etc). However, it took us four years to diagnose and he’s been treated with antibiotics for the past year.  Each year he began flaring in December/January- until mid summer. Each year by August he’s like a different child- until the next flare begins. This past year, with antibiotics, things were no better. There were new symptoms- fears of contamination and poisoning, and more. 

Just before school started this year he had a cold and he began “evening” for the first time since last winter. His fears have begun to return. He also has says that he gets invisible arrows in his body and has to pull them out and “throw” them away. I often see him doing invisible things. I’m terrified of what we have in store this winter. 

Why doesn’t he get better with all the supports he has in place- antibiotics, etc? What do we do next? What are we missing? Does this ever end?? I feel like I get one month a year with my child and it breaks my heart.

Thank you for your thoughts,

[dasu]

Sorry to hear this. It’s a painful and often hopeless situation. My kids also flare in the fall and generally improve during winter or spring. Never figured that out but it’s typical with many p kids.  I’ve considered allergies, mold,  and seasonal changes in the immune system (nothing to do about that one)  but the largest impact appears to be cumulative exposure.  

 

Have you considered home schooling?  There is less exposure and increased freedom to flex with the symptom.

Edited September 26, 2018 by dasu

[WorriedMom1]

Hi - One question:  Does your son still have his tonsils/adenoids?  Your son's pattern of improvement and relapse is nearly identical to that of our daughter until she had her tonsils/adenoids out last summer.  It was a game changer for us. She no longer relapses with exposure to infection, and she is back to riding her horse again after 3 years out of the saddle. (She is a show jumper and jumps 2'9" at 11 years old). Our daughter has been treated at Stanford and they have seen improvement in other patients post tonsillectomy.  Good luck and don't give up hope. 

[MountainMom]

Dasu, 

I’ve thought about homeschooling- but I can feasibly make it work financially. Wish I could. I also can’t fugure out why his flares last so long.

thanks for your response.

[MountainMom]

WorriedMom,

Did your daughter have an issue with strep? My son doesn’t seem to.... are they doing this for kids without Strep related flares?

I will talk to his doctor about that. Glad your daughter is doing better!

[dasu]

Flares go a long time for my kids as well.  I would also like to figure that out, among many other things.  At the heart of it, I am of the opinion that something else is driving Pandas as I dont see any family history yet both of my sisters have P kids.  Its one or more of diet, plastics, pesticides, glyphosate, vaccines, EMFs or who knows.

The frustrating thing about Pandas is that what works for one person doesnt necessarily work for another.  Both of my kids did a T&A without any success, in fact it was after the T&A that we went into the worst flare.

[WorriedMom1]

Hi Mountain Mom - My daughter has never had positive strep titers or a positive strep culture (though she did have strep when she was much younger before some of her earliest PANS symptoms). With respect to strep antibodies, my daughter was considered a strep non-responder: her body mounted almost no response to strep at all.  Evidently, this is typical in about one-third of all PANS patients.  The reason why our doctor's advised a tonsillectomy in my daughter's case is because: (1) her blood work consistently showed her body was fighting an infection and there was no obvious source for the infection, (2) she consistently showed improvement with steroids but would relapse with each illness/germ exposure, and (3) she had cryptic and enlarged tonsils, so a tonsillectomy was advisable.  As any ENT can tell you, tonsils and adenoids can act as a huge sponge in which bacteria can easily hide. In my daughter's case, the ENT found that her tonsils were oozing and full of pus when he removed them.  A biopsy of the tissue showed that she had MRSA (methicillin resistant staph aureas) in her tonsils. Before the tonsillectomy, she had been doing literally 8 hours of OCD routines each day.  All but the smallest trace of OCD disappeared almost immediately post-tonsillectomy.  Now, her only meaningful residual symptom is emetophobia, which she is working through with a therapist and does not keep her from school, activities or friends.  I would urge you to have a consultation with an ENT. It can't hurt to see whether it is advisable in your son's case.  At a minimum, removal of tonsils/adenoids should reduce the frequency of illness, and by extension, reduce the frequency of flares. Sending you lots of positive thoughts, WorriedMom

[4Nikki]

Has anyone mentioned diet? Sugar is a big  exasperator of symptoms for our daughter. You probably already do something like this but we keep a daily journal of everything she takes and note the symptoms, behavior and intensity. This helps us to track and report more accurately to the doctor.

[MountainMom]

I do low sugar and no gluten. I'm not seeing these things helping. I'm so at a loss!