swarmie

I spoke with my friend tonight and she said it is believed that her son had the coxsackievirus in the past. In other words, I misunderstood and thought her son's bloodwork showed an active case of it. Not so. She also says that her son must have been sick multiple times after he contracted the coxsackievirus, whenever that was. Is it normal for someone with PANS that has gone untreated to show no PANS-related behaviors while exposed to various infections until one day...while sick with another nasty cold you all of a sudden have severe OCD? I think my friend is having doubts whether or not it would be worthwhile to pursue tx. with Dr. T. She is struggling to see how the coxsackievirus that her ds once had (and that most people contract regardless of PANS) actually caused the sudden OCD behaviors. (Unfortunatley, I think another reason why she is hesitating to try an anteviral drug is that Dr. T. isn't returning any of her emails or phone messages:(.) Have any of you faced challenges in communicating with Dr. T by email/phone? So what do you think? Do you think it is still worthwhile to treat for coxsackievirus even though it appears to be an infection of the past? Perhaps my friend and/or I simply do not know enough about the coxsackievirus to know what is best for this ds. Another question. My friend's son is exhibiting severe OCD behaviors approx. half the time. In other words, his OCD behaviors operate like a see-saw. One day there are little to no behaviors, the next it is very, very bad. Is this normal? My daughter, who had severe OCD (plus some) while actively infected with microplasma, did not exhibit this yo-yo type of behavior. (Without tx. her behaviors were everyday awful.)

My friend's ds has been diagnosed with mitochondrial disease as his primary disease with mild autism as a secondary disorder. MD does have a significant impact on the immune system, I know. Hmm. I know it's a shot in the dark, but I wonder if perhaps MD + the mild autism + the coxsackievirus could have enough to trigger the onset of PANS?? Or maybe it's just that MD (and even mild autism) only impacts the integrity of the immune system, thereby making one more susceptable to catching infections that lead to PANS? I believe my friend commented that Dr. T. stated to her that kids with MD are much more susceptable to PANS than other children who don't have this disease. Ugh! I sure wish it was easier than this to obtain definitive answers! Thank you, btw, for sharing your thoughts, as well as your experiences with treating the coxsackievirus. Very enlightening.

Yes, I knew that kids with pre-existing PANDAS or PITANDS could exhibit OCD behaviors (or any behavior related to the dx.) with the onset of any viral or bacterial infection. However, based upon what I've read in the past, I was under the impression that PANDAS/PITANDS could only form initially by a bacterial infection and not a viral infection(?). Not that it isn't out there...but I couldn't find any research online (besides Dr. T.'s radio podcast) to support this theory that viral infections literally caused PITANDS/PANDAS, so I was wondering if Dr. T. was formulating his own hypothesis about the hand/foot/mouth virus based upon his own clinical experiences? My friend has decided to treat the hand/foot/mouth infection...to see if such tx. will alleviate the OCD behaviors her son has been exhibiting the past several weeks. I think she is making a wise decision. She does not believe her son has ever had STREP or any other bacterial infection in the recent past that would have elicited PANDAS/PITANDS. However, there does seem to be evidence that my friend's son could have had a bacterial infection in years past that elicited PITANDSish-like behaviors (ADHD). I am very curious to learn if the drug Dr. T. prescribes to eliminate the cocksaxievirus does in turn control the OCD behaviors. BTW, thank you for explaining what Dr. T. theorizes goes on inside the body as the PANDAS/PITANDS behaviors are in full swing. I had read about the antibodies/basal ganglia theory and not about the prostaglandins/cytokines theory...very interesting! I am so glad we have Dr. T's expertise to depend upon. As an added note, I'd like to say that I am grateful beyond words to Dr. T. for his expertise and his care for my daughter. Without Dr. T., I don't think my daughter would be what she is today. Dr. T. truly is a godsend!

Thank you all for your responses. Hayley, we are eager to hear what Dr. L. has to say about the coxsackie virus acting as a trigger to PANDAS. I will pray for your daughter... I'll pray for all the families on this board who are effected by PANDAS/PITANDS.

I am a parent of a seven-year-old daughter who was diagnosed with PITANDS in 2010. Dr. T. was her doctor. Well, now my friend's eight-year-old son recently showed a sudden SEVERE onset of OCD. Dr. T. recently ran a series of blood tests in an attempt to rule out PITANDS/PANDAS. Unfortunately, Dr. T. could find no infections in her ds's body; however, my friend's ds did show that he had the hand/foot/mouth coxsackievirus. Dr. T. recommended as the first course of action to rule out strep even though his bloodwork did not indicate his body had this infection. (I understand that MANY kiddos with PANDAS have had strep without any markers to indicate such an infection.) Unfortunately in this case, the antibiotic prescribed by Dr. T. has proven ineffective in decreasing the OCD behaviors. As the next step, Dr. T. mentioned prescribing another drug to rule out hand/foot/mouth coxsackievirus as a potential link to the OCD behaviors. Has anyone on this forum had a child that was diagnosed with PITANDS with the hand/foot/mouth coxsackievirus as the primary/only link to PITANDS? That is, no infections or other viruses were found in the body except this hand/foot/mouth coxsackievirus? My friend wants to know if this virus has a history of causing PITANDS itself. In addition to paying for the bloodwork and the antibiotics out-of-pocket, my friend says Dr. T. is charging her $300 per phone conversation with him, which creates a financial hardship to this family. She wants to be sure there is a viable link between hand/foot/mouth coxsackievirus and PITANDS before pursuing further tx. with Dr. T. FYI, there is a history of OCD in this family, if this helps? Any advice/experiences shared would be greatly appreciated. Thank you.

Cindy, sorry to hold up Dr. T's phone line:). I remember when I tried to call Dr. T. for the first time I bet I called at least 7 times in a row, desperate like, hoping the line would be free to talk to someone or at the very least leave a message.... (He must have only one line??) Thank you for sharing with me! I wonder if we'll be in a similar situation in that the blood tests won't tell a whole lot??? It will be interesting to see how my dd does with the biacin. Dr. T. says if this is PANDAS/PITANDS, then she is probably experiencing her first episode, given the "mildness" of her behaviors. I know this is true, but when you hear your child say out of no where, "Daddy, I'm afraid Mommy is going to get a sword to kill me," and "I think it would be fun to die," and so on, it just doesn't seem mild at the time. I'm just grateful for professionals like Dr. T who can help. When this all started, I felt like I had entered twilight zone, everything so surreal. Not happening. Now, because Isabelle is doing this on/off thing (bad day/normal day/emotional lability...), I feel like this thing is trying to play tricks on my mind. One day she's showing OCD behaviors as much as 13 times in 1 hour, another day she has no behaviors at all. Really bizarre and confusing. Ugh. It can really be hard being a parent sometimes. I never dreamt anything like this would ever happen. None of us did, I'm quite sure. I'll pray for your family. I'm happy for you Dr. T. has helped:). I feel much better now that my dd is his patient, that's for certain. Susan

Thanks again for your responses! I really appreciate all of the sharing of personal accounts as well as the advice and referrals. I wanted to share with you what steps we have taken since I last communicated on this forum. I have taken the advice to call a medical professional who has previously diagnosed and treated PANDAS successfully. Specifically, I called Dr. Trifiletti (Dr. T., as he likes to be called) for a phone consultation, which took place this morning (Sat.). (He responded very quickly!) I believe we are now in very good hands!!! Dr. T has ordered several blood tests to look for various infections that may have triggered PANDAS or PITAND (standard protocol for PANDAS/PITANDS, as I understand). In the meantime, he has prescribed my dd an antibiotic (Clarithromycin). He recommended a probiotic in conjunction with the antibiotic (e.g., Florastor) to avoid side effects, as well as to thwart off any ensuing nasty bugs. Interestingly, I believed him to say that allergies may play a role in this somehow??? That is very interesting. Have any of you heard about allergies being associated with PANDAS/PITANDS? Any stories to tell? I suspect you all know PANDAS/PITANDS quite well and are receiving good care, but if you want to know anything specific about my dd's care that may benefit you in some way, I would be happy to share. S-

Thank you so very much for the responses to my plea for help. It is so nice to be able to communicate with other families, like you, who can offer support and advice. My brain is now mush at this late hour, but wanted to make sure to pass along my thanks before my night ended. Tonight, my daughter said to me, "I have a lot of bad thoughts and I think about death a lot...I want a doctor to take these thoughts away." How sad is that? Anyway, I emailed Dr. T for advice. Today my best friend who has been helping me found a family in KY, my home state, who has a child diagnosed with PANDAS. So, I also emailed the mother of this family with the hope she can direct me to a ped. in KY who has successfully diagnosed and treated PANDAS. If you are comfortable, please pray for my family, that my daughter receives the help she needs. Even though I don't know your situations exactly, my prayers go out to all of you. You are not alone, and there are people who do care. Thanks again.

On Nov. 9, my 6 year old daughter started to exhibit very sudden, significant changes in behavior. I have been told her behaviors fit mostly under the Scrupulosity category of OCD. Some examples of behaviors include my daughter saying, "I want to worship Satan...Daddy, I'm afraid Mommy is going downstairs to get a sword and kill me...I'm afraid the church will kill me...I want to worship junk more than God...I feel like dying is interesting...I kind of want to make a fire, but I know I shouldn't." These type of statements seem to have come from no where??? For 4/9 days she has shown emotional lability (crying for no rational reason). She does not present with a physical illness, nor has there been any significant changes in her life that would elicit such sudden, odd behaviors. She is homeschooled; she has not been alone with any strangers that could have caused her trauma. We took her to a pediatrician on Nov. 16, who admitted her in the hospital for a diagnostic workup. They did a couple of blood tests (including a titer...to test for strep within last 6 months), a throat culture, and an EEG. All results were clean. Five child pschiatrists examined my daughter during her hospital stay, and they all agreed she did not show psychosis or exhibit behaviors associated with non-organic OCD. None of the professionals are familiar with PANDAS. Never diagnosed or treated a patient with PANDAS. What do you think? From your experiences, is it possible my daughter may have developed a PANDA despite low ASO-titer and D-nase B titer numbers (which indicate no strep within the last 6 months)? Also what is interesting is that my daughter's behaviors seem to have waned. For at least 3 days in a row, she exhibited as much as 13 behaviors/episodes in one hour. For the past few days, she has only exhibited approx. 5 behaviors in one day. Any advice would be greatly appreciated. My husband and I want to help our daughter any way we can. Thank you.