flamom

DD says she feels that she has to bite down hard on her teeth over and over. This just started tonight. Might parasites be causing this? DD has major food allergies, some positive Lyme bands, high C4A, chronic Myco and Pans. Thank you for any help.

Thanks so much qannie47 and 3bmom. I just don't understand why our kids are almost asymptomatic when they have fever/flu?? It's as if their immune systems are working appropriately during these illnesses. 3bmom, you raise a good point-- the rash on face (especially chin) is tiny red dots. But DS is on Augmentin/Minocycline/Zithromax, so pediatrician said no need to test last week for strep when Flu B came back positive. Do you agree? Is it possible to still get strep while on so many antibiotics?

My ds 15 had a bad bout with Flu B last week --- very high fever, body aches, etc. Took Tamiflu, and is now left with a chesty cough. Oddly enough, his Pandas symptoms were not bad during the flu week...tics decreased, OCD, anxiety, and ADHD symptoms were all surprisingly decreased. Two days ago, however, the Pandas symptoms came back with a vengeance. Tics, OCD, anxiety, hyperactivity are worse than they've been in a long time. He also has a red, dotted rash on his face (we think this rash--which we've seen on his trunk before-- is yeast related). AND, he is finding it hard to make eye contact-- he has never mentioned this symptom to me before. He has consistently been on antibiotics, and he has ongoing mycoplasma. Any help would be greatly appreciated. Thank you.

Our doctor changed our son's (DS 15) antibiotic from Rifampin/Bactrim/Omnicef to Minocycline/Omnicef two days ago. His tics, anxiety and OCD have gotten even worse ever since. Wondering if this is from the change in antibiotics and if so, will it stabilize? Thank you for any guidance.

Thank you pr40. Yes, my son (DS 15) had 4 IVIG's-- the last 2 helped a lot, but only temporarily. I have just started him on a GF/DF diet, so keeping my fingers crossed that it will help him. He is very allergic to dogs, although our breed is supposedly hypoallergenic. I don't think we should keep it in light of our Pandas struggles, but try telling that to the kids:( I just learned that he has a C677T and A1298C mutation, but haven't been told what to do about that. Have not done 23 and me yet, but sounds like I should. By "GF processed food", I meant GF bread, cookies, nutrition bars, etc. I have not excluded sugar, as I am trying to make the GF/DF diet more palatable, and their other siblings are having sugar, which makes it twice as hard. I know it's far from ideal... As for mold, I know that my son (DS 15) tests very high for mold allergy, but I am not aware of exposure. We do live in Florida, however. Thank you for the lead on myco, I will check it out. I'm sorry about your celiac:( I am hoping to having testing done thru Cyrex to rule it out for DS and DD. Thank you so much for your help.

Thanks so much for your reply, Rowingmom. DS15 was evaluated by Dr. J in CT (LLMD) shortly after onset of PANDAS symptoms. Lyme, etc. was ruled out, although your reply concerns me b/c DS15 was bit by tics multiple times prior to PANDAS diagnosis. I do not recall DS6 being bit by a tic, however. We definitely do see an increase in tics associated with toxin buildup from die-off, as evidenced last week when we were treating with DS15 with Byron White A-Myco drops. Had to stop treating when we saw a definite flare in all of his symptoms. All children are currently being seen by specialists, but unfortunately no one has been able to diminish my son's (DS15) symptoms since his diagnosis in Jan. 2012. Now I am so fearful to see the same symptoms in my daughter (DS6).

Thank you Chemar:)

Hi All, I am new to this forum and have 3 children diagnosed with PANDAS/PANS-- DS15, DD10, and newly diagnosed DD6. Of the three, only DD10 has seen improvement with antibiotics. DS15 has been struggling since Jan. 2012, head and neck tics are indescribable, panic attacks, and OCD. Makes going to school very challenging. DD6 was diagnosed this past year, and we thought we were managing tics with antibiotics, as they were subtle and infrequent. She has ongoing severe separation anxiety. A few weeks ago, however, she too developed awful head and neck rolling tics. We see a direct correlation between gluten and dairy and DD6's tics, and have changed her diet. Lately, however, she is still ticcing shortly after eating even processed "gluten free" foods, so I am confused (unless they are cross-contaminated, as she has a peanut and flax allergy as well). Problem with all of my kids seems to be Mycoplasma. We cannot eradicate it from my house. I am beginning to wonder if my dog might even have it:)! Does anyone else have multiple children with PANS/PANDAS, rooted in Mycoplasma? If so, do your children have similar tics? And have you had any success in treating it? Many thanks for any responses. And best wishes to all here for speedy recovery.