EAMom

FYI 3boysmom...BCH may delete your post if you use names (not sure if just Elizabeth is enough for deletion)...so check and make sure your post is still there in a few days

If anybody wants to join in, the question was posted (by a certain PANDAS parent/advocate): "I’m hearing from a concerning number of parents who are being accused of “doctor shopping” because of their search through multiple providers, trying to find someone who can finally treat their child’s PANDAS/PANS. Isn’t that lovely: getting accused of doing something wrong for refusing to give up or listen to the uneducated who say you're wrong. For Sammy, I had ten or eleven doctors involved before two Daniel Geller, MD and Cathy Nicolaides, MD - treating simultaneously - knew what to do and got it right (with the support of Conner Moore, MD my pediatrician who came on board after I fired the first one). How many doctors has it taken you?" someone has suggested writing (on BCH's FB wall) PANDAS stories of how many docs they had to go through for proper diagnosis/treatment...so go at it!

hopefully some of the ACN members (and guests) reading this will post pictures on BCH's page as well!

Here is the first local story on this http://bostinno.com/2012/10/12/elizabeth-wray-boston-childrens-hopsital-custody-battle-pandas-pans-disease/ If you are on FB, be sure to "like" the BostInno and also the story.

If anybody is on FB...one thing PANDAS families are doing is posting pictures/stories of their PANDAS kids on BCH's page...so feel free to add to it. http://www.facebook.com/BostonChildrensHospital?ref=ts&fref=ts TO see what I am talking about, go to "recent posts by others" (right hand side) and click "see all".

Wow! Great story!

is there anyway you can copy and paste the translation on here?

How do you get an online translation (my computer ignorance is showing)?

kudos to the person who wrote that blog post...very well written!

Yeah...too bad Dr. Latimer had you change 2 things at once (different antibioitic and also starting the steroid) since it makes it more difficult to see what is causing the decline. My dd also had not so great response to being on steroids (increased irritability/aggression) but she was only on it for 5 days, then about 2 weeks later, her PANDAS symptoms would improve. When my husband was on steroids once for a lung problem, he got pretty weird and grouchy too...so steroids can have weird effects on anyone. I agree with DCMOm about the Ibuprofen...but most docs won't want you to do steroids at the same time as ibuprofen. So, one approach might be to go back to the cephalosporin (no steroid/no clindamycin) with ibuprofen, and see where that gets you. Then try clindamycin again (w/out the steroids). Then once things are stable (and you can see clearly if things are better or worse on clindamycin), go back to the steroids (while either on clindamycin or cephalosporin).

Yay!!!!!

LLM I just requested you be added to a private FB group (I thought you were already a member). I hope Dr. Jenike is going to get involved (somehow) since the IOCDF is. It is weird that Mass General and BCH have such opposing views on PANDAS (since both are associated with Harvard Medical School). I don't know if this has already been posted, but here is another e-mail to send "complaints" (in additiont to BCH's facebook page and the other places) public.affairs@childrens.harvard.edu I think having Beth involved (as a lawyer, advocate, pandas parent) is great. However, the IOCDF/Jenike carries a lot of clout (esp. in the medical community, above and beyond that of "infuriated PANDAS parent") so I think it would be a mistake to leave the out of the picture.

I agree, use EMLA cream (and some bribery!!) Frequent urination was an early PANDAS symptom for us...it was one that responded well to antibiotics. In other words, for us, it was a symptom that went away pretty easily (more so than the tics/ocd). Oh, btw, while frequent urination is quite common in PANDAS kids, only 1.9% (and I wonder if they were misdiagnosed, actually had PANDAS!) of non-pandas kids with tics have frequent urination (pollakiuria sp?) in this paper from Taiwan http://memo.cgu.edu.tw/cgmj/2811/281105.pdf "However, we could find almost no articles in the literature discussing pollakiuria in children with TD (either chronic or transient), except for articles about pediatric autoimmune neuropsychiatric disorder associated with streptococcal infection (PANDAS),(2) which is an abrupt and explosive onset of behavioral problems (obsession, compulsion, tic, attention deficit, hyperactivity) with the presence of group A beta-hemolytic streptococcal (GABHS) infection. It was our aim to describe the possible association between pollakiuria and children with TD, after excluding PANDAS, and arouse clinicians’ awareness of this specific issue." of the non-PANDAS ticcers: "We found that nine (1.9%) out of 467 children with TD had pollakiuria: 407 boys and 60 girls, with a mean age of 8.7 years."

Hi, (I have also posted this elsewhere) if anybody has PANDAS stories that are willing to share, PM me...I'll then send you the e-mail of a PANDAS mom in MA who is trying to help out the PANDAS family that recently lost custody of their child. (She would post herself but is pretty swamped at the moment.) This mom is compiling a list of contact info that the IOCDF will be sharing with a Boston Globe reporter. Please let her know if she can add you to the list. What would be especially helpful are stories re PANDAS and BCH. Here is this is the original thread on this topic http://www.latitudes.org/forums/index.php?showtopic=18581 and also http://www.latitudes.org/forums/index.php?showtopic=18601 thanks!!!

Hello, if anybody has PANDAS stories that are willing to share PM me...I'll give you the e-mail of one of the PANDAS moms who is trying to help out this family. (She would post herself but is pretty swamped at the moment.) This mom is compiling a list of contact info that the IOCDF will be sharing with a Boston Globe reporter. Please let her know if she can add you to the list. What would be especially helpful are stories re PANDAS and BCH.

Hi Everyone...(I'll also post this as a separate thread) Some people in the PANDAS community are working to help this family out. Yeah!! This is from one of the mom's (who would post herself, but is pretty swamped) who is trying to get a reporter involved. "Anyone that has had an experience with Boston children's -/ please send me your story , be sure to include ALL doctors names and how they treated you. If you want to remain anonymous let me know....Boston families that were seen at BCH is most important BUT I want the reporter to have even more families that are willing to share their story. Don't know what the reporter is going to want." Please PM me and I will give you this mom's contact info. Or...you can just PM me your story/contact info and I can forward it for you. PS other things to include: name address, tel,email and whether your child was seen at BCH,thanks!

Beth posted this warning on her Facebook page as well, and there are about 25 comments. Here's a link: http://www.facebook.com/#!/pages/Saving-Sammy-Curing-the-Boy-Who-Caught-OCD/104887432702?fref=ts If the link doesn't work, go to Facebook and search on "Saving Sammy: Curing the Boy Who Caught OCD." I'm not sure if she can/will share details of the court hearing. Beth has another page here http://www.facebook.com/beth.maloney.94?ref=ts&fref=ts#!/pages/Beth-Alison-Maloney/233696275037?fref=ts

Hi DCmom, I haven't read all the replies. My PANDAS dd (now 7th grade) is a terrible speller. She always has been (not sure how much of it is long standing PANDAS--also PANDAS that "struck" at the wrong developmental time). In her 504 her teachers aren't supposed to deduct points for spelling (unless it is specifically a spelling test)--that is her accommodation. As she gets older, the spelling issues are becoming less important. Thank goodness for computers and spell check. By the way, she is a very good writer (content) and a voracious reader (including adult/young adult books). Aside from spelling, her other problem is with math. I'm not sure if the dictionary in class is a good accomodation. My fear is that 1) she might not want to use it, she'll stand out and be different from the other kids 2) it might slow her down if she is spending all her time looking up how to spell things 3) my own PANDAS dd doesn't always know which words she is spelling wrong (in order to look them up). If you do decide to go the dictionary route, you might consider one of the electronic spell checking ones http://www.amazon.com/gp/bestsellers/electronics/11072581/ref=pd_zg_hrsr_e_1_3_last BTW...my dd's handwriting is getting better. Not sure if puberty helped that?

Agreed, and normally docs don't use doxycycline on younger children (even with Lyme).

I thought you didn't want to do steroids if there was any chance of LYme (or other tick diseases I assume). I agree with what SFMom said, she is probably relapsing due to tick borne diseases.

This is from one of Beth Maloney's blasts (note, she mentions $75k...I heard elsewhere that Dr. C has since got the $): We were asked not to discuss the actual presentations in any detail as it might interfere with the presenters ability to publish their research, so I will just write about the conference itself. I’ve included photos at the end of this email to help you feel connected. The conference was absolutely stellar! It was attended by researchers, physicians, scientists, professors, moms, and dads from all over the United States and across the globe. There were physicians already on board with PANDAS, those with different opinions, and those who came to find out what it was all about. I think there were more than a few "newbies," or those who previously held unfavorable positions, who walked away knowing that PANDAS is not a fiction; the presentations were compelling. It was a tremendous opportunity to spend time learning and sharing with one another, and so moving for me to have the opportunity to personally meet and get to know so many who have emailed. Parents introduced themselves by their stories. "My son is the one who wrote the rap song," - "I'm the one who lives in England," - "I'm the mom who was accused of Munchausens," - "I'm the mom from Saudi Arabia, who emailed when I saw your story on television there," - "My son is the one in the video from last night," - "I'm here from Denmark," - "My son is the one who ended up in jail." They told me more about their lives and asked me more questions. "I'm not a doctor and I can't give medical advice," was always my opening, "but if this were my child here's what I would do..." Parents left our conversations with action plans. And so many said that reading my book had empowered them to look for and find the answers they needed, knowing for the first time that it's okay to question a doctor. Wow! I felt great! Each morning the conference started with breakfast and by 8:00 or 8:30 the research presentations were under way. On Monday the presentations went until 10:30 that night, including the panel for parents. Tuesday we were back at it early and didn't wrap up until 6:00 pm. After each presentation, the presenter took questions from audience members. They were all so patient and kind in answering all the questions asked about sick children, and about how their research or treatment might have an impact. No one was turned away. Some of the descriptions that the parents presented of their sick children were heartbreaking, and every doctor did their very best to help. Dritan Agalliu, PhD, who organized the conference - and those at UCI who helped him with the arrangements - did a remarkable job of putting it all together. There was never a glitch. Shuttle busses ferried participants and presenters back and forth from the Newport Beach Hyatt to the Beckman Center at UCI. We shared coffee breaks and delicious meals throughout the day and evening. Meals were served buffet style along a walkway leading to a friendly outside patio. The casual gatherings for meals, around the mission style furniture, led to informal discussions of what we had learned and where we all hoped this would go. Dr Mady Hornig brought me up to date on all the ideas she has for more research. Dr Tanya Murphy mentioned some of the things she learned at the conference as so exciting that it made her want to start exploring right away. Listening to the two of them banter, I felt caught in the middle of a brainstorm. Dr Madeleine Cunningham explained all about her testing. She was terribly disappointed to let us know that the opening of her lab is being delayed due to funding. At the last minute, three investors (each due to contribute $25,000) pulled out. If anyone has any ideas about helping her to raise that remaining $75,000 please don't be shy; reach out to her. Madeleine-Cunningham@ouhsc.edu She is always so personally kind to me. I would love it if you have ideas on how to help her. Dr T presented his alternative fever response theory and pointed out that PANDAS has been around since the 1800's. Dr. K shared his own insights. There were new voices, too. Paul Patterson PhD from Caltech presented on the relationship between maternal health and autism. Victor Nizet MD from UC San Diego, and Edward Kaplan MD from the University of Minnesota both spoke about strep. Dr. Kaplan pointed out that the focus should be a rise in titer, not necessarily an elevated titer (while acknowledging that sometimes the titer doesn't rise). Dr. Thienemann shared the somewhat distressing history of psychiatry. Dr. Agalliu presented about the changes to the blood-brain barrier in diseases of the central nervous system. Gerald McGuire MD discussed the link between stuttering and strep, and there were so many, many more. The presentations were multiple and fascinating. The large lobby off the auditorium was always full of people excitedly talking and exchanging information, where there was coffee - lots of it! The presentations offered much to absorb and even more to digest, and I know that pieces will come to each of us who attended as the days and weeks progress. The point was made during one presentation that we need more research studies. "How many more do we need?" I asked. "There are hundreds of studies going back to the 1950s." Dr. Murphy added, "some from the 1920s." I kept pressing, "so what number will be enough?" Finally a UCI student sharing coffee in the lobby had the answer, "One more; that's it - just one." I burst out laughing. The conference was sponsored by the Allergan Foundation. I was lucky enough to share dinner on Monday with Mitchell Brin, MD, who is Allergan Inc.'s Sr VP of Global Drug Development and Chief Scientific Officer. He explained that the Allergan Foundation is interested in exploring new areas of medicine. He was genuinely perplexed and found it hard to believe the many roadblocks that I described about the treatment and recognition of PANDAS. But when I reminded him of the story of stomach ulcers, it all seemed to click. He and I have different and complimentary ideas. He feels we need a scientific foundation. I'd like to find a celebrity. We agreed that both are necessary. "I wouldn't wish this on anyone,"" I said, “but if one of Angelina Jolie's children had PANDAS and she came forward, the battle would be over." We discussed that PANDAS would never be where it is today except for the fact that parents have relentlessly demanded that the disorder be recognized. When I asked him if Allergan would be interested in funding research, he explained that the ability of a pharmaceutic company to fund research is limited to developing a new drug that may treat an illness (I think I have that right). He said that this is a government limitation, but a scientific foundation devoted to the disorder would be able to fund. Dr. Brin said he’ll be reading Saving Sammy via audio book. I think my personal presentation went well. As a speaker, I'm always relieved when no one falls asleep. The auditorium was packed, people were crying and clapping, and no one got up to leave or dosed off -- so I was satisfied. Everyone was thrilled to hear about Sammy's solid recovery and that he is living the life of a regular college guy. Illustrating how normal he is, I mentioned that he never calls his mother, and the whole group burst out laughing. I outlined where PANDAS was when Sammy got sick, where we are now, and what I think needs to change for the future. One of my examples really hit home so I'll mention it here. If an elderly person is brought to the ER exhibiting behaviors that are out of character, the ER team's first thought is to look for an infection. When it's a child, the immediate thought is to look for a psychiatrist; this needs to change. And when a parent asked if it was okay and to question her child’s doctor if treatment was not producing results, my answer was, “It’s your job to do that; call the doctor tomorrow.” Best of all, from my presentation came our next big idea. It was born of a question. Wendy Swyter of California stood at the microphone and asked what she could do to make a difference in the recognition of PANDAS. I said that we need the American Academy of Pediatrics on board; that it was not acceptable for the AAP to issue a bulletin stating that doctors should consider treating pre-schoolers with psych meds for ADHD behaviors, yet not support running a throat culture for strep. "What can I do about that?" she persisted. I answered, "The AAP needs to receive one thousand letters from parents." "Done!" she said. And so it will be. Wendy has signed on as the National Coordinator of the Campaign for Change at the AAP. Over the next few weeks, she will develop a plan and a template with key points to mention, figure out exactly who is the correct person to approach at the AAP, gather contact information, and then I will circulate it to all of you. You'll help us, won't you? It's always the personal stories that drive change. Hmmm...I wonder if we could get some coordinated PANDAS publicity out of this - "Parents Take On the AAP" - I'll ask our press liaison Kimberly Nelson, who has drafted our very successful Fill-in Press Releases.

thanks norcalmom!

Hi, are you giving the Augmentin 1x daily or 2x daily? I would give it 2x daily since it has a short 1/2 life (I know Dr. K likes 1x daily sometimes, but others disagree with him on that due to the short 1/2 life of amoxicillin/clav. acid. There are many discussions re once daily Augmentin. Here is one http://www.latitudes.org/forums/index.php?showtopic=11782 and if you google "once daily augmentin" you can find more).

So he had IVIG in June...and would you say he improved overall after that (until a few days ago)? I'm pretty sure TS wouldn't improve with IVIG. I wonder if there is an infection (could be strep or otherwise). Was your son out of school for the summer, and now back in school? Is he still on antibiotics? What dose?

Not going to Irvine, wish I was!