kimballot

Her talk was more about lyme than specifically about PANS reactions with lyme and coinfections. Lyme was discussed when other doctors talked about PANS as opposed to pure PANDAS and there was discussion about lyme, mycoplasma, mono, and other infections causing an exacerbation. I think the tricky part for folks with lyme and PANS is to sort out which symptoms are directly from lyme and which may be the result of an autoimmune (misdirected antibody) response in the brain. One think that I came away with is that chronic infection is very different from acute infection in the way the immune system reacts, and that the kids who are caught early with their first Strep-based exacerbation are likely NOT having the same level of immune system changes that kids with chronic infection are experiencing.

Sorry. Babesia, ehrlichia and bartonella were specifically addressed? I am looking through the PowerPoint presentations at the moment, but haven't gotten that far I guess Jeanne Hubboch slides - 6, 15-19. They taped the conference and if she signed a release for her talk, you will be able to hear what she said once it is finished.

I have worked with Dr. Bs office for a number of years and have watched his practice grow and his staff work to modify their procedures. I have also been frustrated if I am not able to get in to see Dr. B when I want or if I don't get a phone call back when I want - but that has only happened when my son is NOT in crisis. When in crisis, Dr. B always responds. It is clear that the practice has not kept up with the demand, though Dr. B has added nurses, office managers, and a physicians assistant along the way. He is clearly stretched very thin, as are all the PANS doctors. However, I have to say that I have NEVER been treated with anything but respect and dignity by the secretaries and nurses. They have always been polite and caring once I get them on the phone. From your comments it is clear you are very upset with the staff and I am sorry you had this experience. However, you may want to re-think the wording of your post as we try not to be derogatory toward our providers. It really does not serve any purpose and just makes us look like we are unreasonable to those who read our posts.

I am seeing lots of updates, including pictures and quotes on facebook pages.

I can understand what the immunologist is saying, and I can appreciate his experience with another child, but I really do not think we are at a point where we can say definitively who will and who will not benefit from treatment. The only studies that have been done with PANS have been kids with clear-cut, first-time PANDAS (no co infections) or a few kids with first-time exacerbations from a virus or another type of infection (back in 1995). I do not believe anyone has studied older children who have had years of untreated exacerbations. I am telling you this as my son is 16 and did not start treatment for PANS until age 13, despite a lifetime of chronic infection and repeated symptoms with each infection. He had many, many small exacerbations with sinus infections throughout his life, and has had two very large exacerbations - one was due to a severe hidden tonsil infection and one was due to a hidden infected sinus cyst. The first one took about 4 years before he was functioning at a "typical" level. The second one happened 4 years ago and he is just returning to school and starting to function this year. Each exacerbation takes a toll and, yes, leaves him with some residual problems such as handwriting or intrusive thoughts. I do believe that with early treatment he would have no symptoms at this point - and that is my prayer for future children. I recognize that this is a chronic condition for my son and he will be managing his illness and his symptoms for the rest of his life. That does not mean that he cannot have a very functional and fulfilling life. Without treatment he would need to be institutionalized, I am sure. So... is there hope for children with long-standing PANS? yes - I think so. Will they be cured? Perhaps not. Can they learn to manage their illness and function? I suspect the majority can and will - but we need more research to understand this disorder to have the best management possible. Should we stop treating them because they are well past their first exacerbation? Absolutely not. Whatever the cost of treatment in terms of time and money and frustration and quality of life... in the long run it will be nothing compared to the cost of NOT treating our kids in terms of time and money and frustration and quality of life.

T Anna - My son is also NOT the simple "strep throat, lots of handwashing, 1 month of antibiotics, all is well" PANDAS case that many people think of when they think of PANDAS. My son had chronic sinusitis since birth. I believe he had his first PANDAS exacerbation at 18 months after adenoid surgery. It is hard to say for sure since he did not have any language at the time, but I remember that his personality changed SHARPLY after the surgery - I remember the wide, dilated eyes, the need for me to be in his bedroom when he went to sleep at night, excessive hyperactivity, and excessive biting after that. From that point until 7 years old we lived an emotional roller coaster whereby his behavior was only manageable when he was on very strong antibiotics. (usually 20 days at a time). At age 7 he had his tonsils out, and the chronic sinusitis lessened as did the PANDAS symptoms - only to return at age 12 after swine flu. It seems the swine flu came when was also harboring a cyst in his sinuses and (we now believe) a bartonella infection with immune deficiencies developing... and that exacerbation culminated in a few weeks of inpatient psychiatric hospitalization at age 14. He is now 16 and is actively treated for his immune deficiencies and bartonella. He is a kind, mellow kid - but is fatigued much of the time and is not very physically fit. His OCD is manageable and he has a great counselor he works with twice per month. He went to school part time this year and we are hoping for full time in the fall. We continue to explore illnesses with him, and recently started working with a new neurologist who is doing an MRI and treating his chronic headaches. Our road has been long and there have been many painful, lonely nights when I have agonized over his future. Right now, though, I am hopeful. His symptoms are manageable and if we can continue down this path he will be a functional adult. He is kind, funny, friendly, and generally happy. He has interests that he enjoys. I consider him a "success" story, though my definition of success has changed through the years. He is not in sports, not in clubs, not in the orchestra, and not on student counsel. I hope you will soon feel relief from your own pain and agony. It is not a simple course but there are many of us here to help, though each child is unique. Please keep us posted on your progress.

So so glad to hear things went well. Prayers will continue.

sorry - did not realize that! I cleared some space!

I know I've not been posting much lately, but I feel a need to chime in here. My son is 16. Grant is 17. My son had a major exacerbation in 2011. So did Grant. My son had severe OCD that made it difficult for him to get to school. So did Grant. I struggled to find help for my son. So did Grant's Mom. My son's exacerbation was so bad that he had to be hospitalized in a psychiatric ward. We had a file at the local police department so they would know what they were dealing with when I called them in the middle of the night to come and help me put my son to bed. My son never hurt another individual, but he posted horrible things on facebook that he SAID he did - though he never ACTUALLY did any of them. I don't know if it was hallucination, fantasy, or OCD. He listened to depressing, gruesome music and fought with me constantly to wear his hair and clothing in anti-social ways. It is hard for me to sort it out. I just know it was horrible ... fast. One police officer told me my son needed to go on PINS and that I needed to get the justice system involved. Thankfully, it never came to that. I changed insurance so my son could get IVIG and be treated by experts all around the country. I was very fortunate to have that option. Slowly, with each doctor, we made modifications in his treatment. Slowly, slowly, slowly, he came back. Today my son is a loving, kind, even-tempered and humerous young man. He still struggles with fatigue and brain fog, but overall he is a very likable kid with a big heart. When people hear who my son is the first thing they say is "what a nice kid". My son received treatment. Grant did not. I do not know what would have happened to him if we could not get treatment. I have no doubt he would be in trouble with the law. Can untreated PANDAS become antisocial behavior? I don't know. I do find it interesting, though, that many people in the PANDAS community have gone to great lengths to support the families from LeRoy and the families at Boston Children's when the doctors have said "this is not PANDAS"... but we are so quick to turn away from a controversial case when it is not pretty. No, we do not want our children associated with antisocial behavior... but if this IS the result of untreated PANDAS then it is best that we find out soon!! I am wondering why we are not screaming at the top of our lungs to find out if Grant has PANDAS and if immune treatments remove the antisocial behavior. Is it possible that a portion of the children in juvenile detention centers could be helped with antibiotics, steroids, and IVIG? Wouldn't that be amazing.

I bought some tick repellant called "ticks N all" from the LLMD. It is all natural - no deet. I am wondering if anyone else has seen this and if it really works. It is found here http://www.ticks-n-all.com/

Thanks and congratulations go out to Trudy Posner, OTR, who gave a presentation to over 100 occupational therapists at the American Occupational Therapy Association annual conference in SanDiego this week. The talk was entitled Pediatric Autoimmune Neuropsychiatric Disorders (PANDAS/PITAND/PANS): From Research to Effective Treatment Strategies.

DS 16 also had indeterminate lyme bands - only positive was 41 before first IVIG. Had an extreme PANS exacerbation after first IVIG and we started treating for "suspected" lyme. After 3 months of tindamax DS was extremely fatigued and barely getting to school. We decided to stop tindamax and immediately saw improvement in OCD and fatigue. The problem was that 6 months later the fatigue became extreme again - only now with purple stretch marks (bartonella). UGH! Once again he could not get to school - but not because of tindamax this time.. just because of the infection. We HAD to go back and face the lyme/bart monster. We started him back again on weekend tindamax about 2 months ago and he always has a HORRIBLE day the day after tindamax, but overall is making progress and is back in school part time. I truly do not think he could have tolerated tindamax while his brain was in PANS exacerbation. Now that the PANS exacerbation has calmed down he seems to be able to tolerate it. I feel like we are all walking on a tightrope trying to balance treatment of the infections with treatment of the autoimmune flares that result from the infections. I think that oftentimes it is not the TYPE of medication that is used, but the TIMING... and the biggest piece is monitoring how each individual child reacts to medications and supplements. Kudos to you for figuring this out and following through!

I am not sure if I am following you here. Your "non" diagnosed son has social anxiety (diagnosed) but no 504. and you conacted people at the school to talk about this, but they've not gotten back to you after 6 days and 4 attempted contacts? Is that correct? I am wondering if the contact attempts have been email or if they have been phone calls. Also, are you contacting them just to make them aware of your son's needs, or did a specific incident occur for which you would like some clarification?

I LOVE hearing this. How wonderful to have your son do something so typical!! WE know how much work has gone into this evening. Enjoy!

Yes... this illness affects the entire family. This video has GREAT ideas.

We have UHC and actually have 2 doctors ordering IVIG (one local, one PANS expert). UHC sent local doc a letter requesting information about reason for IVIG. DS has CVID and PANDAS, but local doc just put PANDAS in letter to insurance co. Insurance co. denied IVIG and we have to appeal now. I called UHC and they said they would continue to cover until August, as that was the original approval period. Now I have to get docs to appeal based on CVID. I don't know if your son is CVID. If he is, I would recommend requesting it under CVID.

I received an email invitation to take an "educational" quiz about children's mental health from childmind.org. The quiz was interesting and can be found here http://quiz.childmind.org/ - and they say that if you take the quiz you earn $1 for children's mental health. I received the invitation from another PANS parent who is a member of this forum and a dear friend, so I am thinking some of you may also have received the same invitation. When I took the survey (which was clearly geared toward main-stream child psychiatry), I gave them my email address, and then I received a follow up thank-you email that stated: We have added you to our mailing list. Soon you'll be receiving email updates about the Speak Up for Kids campaign. Remember to join us online at childmindlorg/speakup in May for a month of live-streamed public education events and on-demand content from experts in the fields of mental health, neuroscience, education, public policy and advocacy. Ok - so I clicked around to see what they had to say about PANS - figuring that might be something I would want to talk about, and here is what I found: Under "myths about OCD" it says: You can get OCD from strep throat. Strep throat is associated with the development of temporary neuropsychiatric disorders that mimic OCD, but they're not OCD. The phenomenon is known as PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections), and occurs in rare instances when the body's immune system reacts to the strep infection by generating antibodies that, for whatever reason, attack the basal ganglia. This can result in a rapid onset of OCD symptoms. The good news is that these disorders are temporary and disappear quickly, lasting only until the strep throat is cured and the immune response is over. (http://www.childmind.org/en/myths-about-ocd/) Ok.. so is anyone out there interested in doing some SPEAKING UP about OUR kids in May?

My DS started showing some relief of depression about 9 weeks after the initial flare. It was after the second IVIG and also after we took him off Singulair (which he had started 2 weeks before IVIG #1). I am not sure if the second IVIG or the singulair removal started him down the right path, but I was sure grateful to see him smile again! The oppositional behavior and rages continued, though, until we started him on treatment for bartonella, so I think those are more bartonella related and less PANS related. Hard to separate out.

He does about a dozen different supplements, but I think I saw the greatest benefit when we added in coQ10 and inositol for energy. He still has a long way to go with fatigue, headaches, brain fog and memory issues.. and I am still looking for ideas... but so much better than he was.

Two years ago today my son was admitted to an inpatient psychiatric unit due to a severe exacerbation following his first IVIG. Today we celebrated his 16th birthday and he was so happy - all week... just loving life, as a boy should be at age 16. It has been a long, twisted, and confusing struggle to dig out of the hole we were in, but a combination of regularly scheduled IVIG treatments, multiple antibiotics for bartonella, multiple supplements for energy and immune support, regular visits with a great psychologist, a school district that *Finally* seems to understand the chronic nature of this illness and will let him attend school part-time for a while, and (above all) a pediatrician who is open to new ideas and able to give my son emotional support have led to continued improvement in functioning. He has no more sinusitis, thanks to the IVIG, and sinusitis was his main PANS trigger, so his brain has had a rest from the PANS flare ups. Now to rid his body of the bartonellla that also took home while he was immune deficient. I am hoping we are at least half way there. Anyway - hang in there folks. If you are in a dark place - please know there is light. Hold on tight and don't give up.

The sleep schedule is a problem for many. My own DS15 just started back to school today after many months and is on a modified schedule where he goes to school from 11 am - 1:30 pm. I am holding my breath to see if he can get on this schedule as he has been up until at least 3 am (frequently even 6 or 7 am) at night in his bed - then sleeping all day. I think the schedule comes over time. Regarding leaving the child alone - I have mostly left DS alone during the day because I know he is sleeping. When he is home, I do try to check in by phone when I can / have him text me when he wakes up / swing home to check on him, etc. There was a time in the past when I was concerned about him running away from home or hurting himself and I did not leave him alone then, relying on family and friends to stop in and check on him throughout the day or even stay with him when I was really concerned.

My ds15 (adut sized) takes 1,000 mg per day. He was taking 1500 but we cut back recently. He takes capsules - not overly expensive on amazon - $21 for 300 capsules. We do "subscribe and save" for even more savings. http://www.amazon.com/gp/product/B001G7R5GI/ref=rcxsubs_mys2_product_title I do know that you need to build up slowly and cut back slowly if you decide to go off. Don't just stop cold turkey if you decide you don't want to do inositol anymore. Have not noticed that he feels tired with it. Inositol is actually in many energy drinks and I know athletes take it as a supplement often as well for energy.

I don't know why doc is not calling back. I would keep trying if I were you. Fever is a concern to me - especially if you are medicating around the clock with ibuprofen and tylenol. I would recommend continuing benadryl around the clock if doc says it is OK. Keep hydrated.

Have you checked for Hashimoto (autoimmune thyroid disease0? My "non" PANDAS dd17 has elevated TSH. She had sleep issues (couldn't fall asleep at night, wanted to nap all day), hair thinning, and swollen eyelids that all started after a bout of swine flu followed by mono in 2009. Took 1 1/2 years and a trip to DR B to get someone to check her thyroid levels, which showed elevated TSH, but normal T4 & T3. Former pediatrician said "it is fine - probably just a testing glitch, since T4 and T3 are OK". Dr B encouraged us to look further. Subsequent testing showed elevated antithyroid antibodies, and continued elevated TSH. Started her on synthroid and symptoms cleared and TSH went down until she had a bad bout of systemic recurrent impetigo in 2012... then all thyroid symptoms returned including chronic, severe swollen eyelids, and now an enlarged thyroid upon palpation. TSH was elevated again. We increased her synthroid and did put her back on antibiotics for one month. Symptoms have subsided and she is finishing those abx now. I am now making an appt with endocrinologist to follow her with this. Bottom line: if TSH is over the limit in our kids, I'd check antithyroid antibodies and check all thyroid levels regularly - especially after infection.

My son started on Straterra last summer. He is adult-sized and started with 40 mg. for a week or two and then went up to 80 mg. He had problems with dizziness and heart racing when he went up, so they bumped him back down to 40 mg for a month and then increased to 80. We've not seen any increases in rages or other side effects. He has had more frequent headaches since he started it, but we also changed antibiotics around that time, so that may be part of the headache situation. Is it possible for you to titrated down to a lower dose for a while and build even more slowly?