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

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.

There are at least two published reports showing a correlation in tonsillectomy and reduction in OCD symptoms. In our own daughter's case, I wish we had gone the tonsillectomy route sooner. She had severe and sudden onset of PANS at age 7. She would improve greatly with Solumedrol IV, but flare again with each infection. Each flare got much worse than the one before. She has never been strep positive, but her blood work showed signs of chronic infection. This past summer, when she was 10, our clinic said that we need to have her tonsils out pursuing further options. At that point, she was having 6-8 hours of OCD routines per day and did not get to bed until after midnight because of the complexity of her routines. Her tonsils were removed, and virtually all of her PANS and OCD symptoms remitted. She returned to school and had an amazing three months. She did have another flare this winter when she got a cold/sinus infection, but it was much, much less worse than prior flares, and we were able to get her back to near baseline with only a 5 day prednisone burst. As for the pathology of her tonsils? It showed that she had MRSA in her tonsils -- methycillin resistant staph aureas. Her doctors believe it was the hidden infection that was causing all of her recurring flares. And none of the antibiotics she was on or had tried (amoxicillin and azithromycin) could ever have reached it. Let me know if you would like to talk further via private message.

Hi - From my perspective, your son's symptoms are textbook PANS/PANDAS: tics, separation anxiety, OCD/repetitive tendencies, choreoform movements, difficulty sleeping, food aversions, mood swings. Even his urinary imcontinence is a PANS symptom - it signals a neurological problem. Our daughter presented with the near exact same cluster of symptoms (minus the tics). Her strep tests were negative and all of her strep antibody tests were very low. They were so low, in fact, that the doctors say that there is every indication that my DD does not mount a typical antibody response to strep. Interestingly though, the major academic institution where my daughter is being treated, says that a number of their patients have no antibody response to strep (my DD's numbers are virtually at 0). Nonetheless, they diagnosed her as PANS based on other clues - elevated circulating immune complexes, anti histone antibodies and signs of an entrenched sinus infection. She has been treated with antibiotics and high dose steroids (the details of which I am happy to discuss off line) and had a phenomenal recovery (though there is still some residual OCD and a anxiety). Which is a long way of saying, please do not rule out PANS just because your son doesn't register strep titers. I would find a PANS friendly doctor near you, and pursue diagnosis/treatment with him/her. Good luck and keep us posted. Many of us have been where you are. We understand.

Hello - My dd 8 had her second Solumedrol infusion in two months on Saturday. After an initial burst of energy on Sunday, she has been extremely fatigued for the past 48 hours. After making it to school for the first three weeks of school (with a few intermittent absences and tardies), she has been too tired to get out of bed much before 11 am ... and far too tired to get dressed, groomed and ready to go out the door. Has anyone had a similar reaction to Solumedrol? We made such tremendous gains last time, but her first infusion was during the summer. So we did not have to get her out the door for anything. Also, I would love to hear from PANDAS moms who struggle with getting their kids to school on time. Any suggestions are welcome.

Our dd will be having her first solumedrol pulse this week. My husband and I were wondering what we should expect by way of side effects after the infusion. Will she likely be tired? If she has had steroid reactions in the past (e.g. irritability), how long will those side effects likely last? We had a very positive response/experience with her steroid burst, but because she will be receiving a larger dose of steroid, we wanted to be prepared for the potential side effects. Thanks for your help.

This is my first time posting to this forum. My now 8 year old daughter had sudden/severe onset of OCD in late Dec. 2014, which was accompanied by severe separation anxiety, huge mood swings/emotional liability, panic attacks and sensory needs. She has been out of school since mid-February. After much trial/error, her mood has calmed with SSRI but she remains extremely reluctant to leave the house, will not let me leave other than for short periods of time, and still has compulsions/obsessions. Stanford's PANDAS/PANS Clinic told me last week that they are not accepting new patients until July. They have (evidently) been closed to new patients since February. Our pediatrician is willing to start her on Abx now given the long wait to get into the Stanford Clinic. Curious to get forum members thoughts on whether this is advisable. Strep titers were run about 3 months after onset and were *negative.* So, at best, we are PANS. Second question, can anyone recommend a good child psychologist in Silicon Valley to work with our daughter. Many of the big names (i.e. Pediatric Anxiety Clinic) are not accepting new patients. I have looked on IOCDF website, but looking for individual references if folks have them. Thanks for the help. Monica