kos_mom

I certainly hope 12 years old is not too late! My two kids 19 and 22 are awaiting IVIG now!

HT's Mom, Fantastic that your son's experience could help another little boy and even better that he has received treatment that makes him "95% me, 5% Pandas." Love that--could any of us said it better? Another bonus is that his mother is a guidance counsellor at a school. It sounds like she was very understanding with your son, but now that she has lived it I am very hopeful that she will become a force for spreading the word in your school system, so that other kids who come down with this will get the help and understanding they need from their school. Ko's Mom

Adding my thaks too, Kath. Very helpful--fingers crossed DD will get IVIG next week, but at G'town instead of Dr. L's because of insurance. Now know all the sutff to make sure gets ordered before we go in.

A much more offical translation went up on Free EW--this one by someone who is bilingual and who did not have to go through a web translator! "The following note is from the senators of the PDL party: The news about E. W. (whose full name can be found on the internet), is making headlines; a 16 year old girl was hospitalized in a hospital in Boston and removed from her family because the parents wanted to have her treated for Pandas and Lyme disease, illnesses that she actually suffers from, but the authorities have imposed, instead, an incredible and unnecessary hospitalization in the psychiatry ward, the senators Antonio Gentile, Giovanbattista Caligiuri, Vincenzo Apothecaries, Giuseppe Valentino and Francesco Bevilacqua of the PDL attest. Previously to her hospitalization, the girl was treated with antibiotics and her condition had improved markedly and quickly, but when she was forced to stop antibiotics to take psychotropic substances instead, the situation suddenly and quickly deteriorated. We appeal to the U.S. ambassador in Rome for action to support the W.family -further attest the senators who believe that a great country like the United States, full of freedom and of science, can not and should not tolerate certain things. This story shows how these disorders are still unrecognized despite clinical evidence and the results achieved with steroids, antibiotics and immunoglobulins (IVIG infusions) and the numerous and constant research studies that confirm the intuition of those who, precisely in the U.S., first identified and discover these pathologies." Ko's Mom

I think he did--I definitely remember him hitting briefly the question of abx resistance. I do think this is an important question for us--doctors have been very trained to limit abx use and I do think it's part of the pushback many of us get from them. I couldn't get appropriate abx for DD with titers of 650 because she was just finishing up a course of abx for pneumonia. The doctor insisted that would take of the strep, never mind that the abx (Avelox) does nothing for strep.

Here it is--I have made a few changes to the translator text to make it more understandable and hope I have not done violence to the Italian: Calabria PDL (an Italian political party)Senators: "The Serious Affair of E.W. in Boston Highlights Untreated Pandas and Pitand Disease around the World." Monday, 08 October 2012 12:36: PDL Senators are making headlines in the story of E. W. (her full name is available on the internet). Authorities have imposed an incredible and unnecessary psychiatric hospitalization upon a 16-year-old girl, now at a hospital in Boston and taken away from her family, who wanted to treat her for her diagnosed Pandas and Lyme disease. PDL State Senators, Antonio Gentile, Giovnbattista Cabahug, Vincenzo Speziali, Giuseppe Valentino and Francis Baker say the girl was treated with antibiotics and her condition improved considerably for a time but when she was forced to stop them and take psychotropic drugs instead, her situation suddenly worsened. "We appeal," they said, "to the US Ambassador in Rome for assistance for this family." The Senators say "it is unbelievable that this situation has occured in a great country like the United States, known for its freedom and science, and it cannot and should not be tolerated." "The situation shows that these diseases continue to be unacknowledged despite clinical evidence and postive results from treatment with steroids, antibiotics and immune globulin," the Italian senators continued, "in addition to the numerous and continuing research studies confirming the insights of those in the United States who first identified these pathologies." By the way, the journalist who wrote the story posted on Free EW that he is an uncle to a Pandas child.

Dut, Good thoughts. I have very much wondered why doctors are so protective of the heart for RF (and for Syndenham's too) but not of the brain for PNADAS/PANS. I understand that without a heart that doesn't function correctly one could die, but without a brain that doesn't function properly one life is greatly short-changed. Ko's Mom

I got the translation by highlighting the entire piece and right clicking. There I got an option for a Bing translation. Another Italian online newspaper has written s tory--information on posts to Free EW FB, but I couldn't get the translation feature to work on that one.

Not just the press--three Italian senators petitioned the US ambassador to intervene in the case. I wonder if a single councilman in Boston has been moved to do something...

I had the same experience too, but when I put Free EW in the search bar it came up. Not sure what is going on. A friend just alerted me to this blog piece on EW, which went up tonight. http://www.fightingpandas1.blogspot.com/

Your son is engaging in echolalia, which is considered a vocal tic. My DS did this very briefly--weirdly during the entirety of a visit to the opthamologist and then it disappeared. I've been told that if a child has Pandas, the chances that a sibling has it are about 40% so you are right to have a high index of suspicion.

Someone on Free EW posted the first news story on the situation--from an Italian online newspaper. From what I can make of the online transalation, some Italian senators have asked the US ambassoder in Italy to intervene on behalf of the family. http://www.strill.it/index.php?option=com_content&view=article&id=143449%3Acalabria-senatori-pdl--gravissima-vicenda-di-e-w-a-boston-pandas-e-pitand-malattie-non-curate-nel-mondo&catid=1%3Aultime&Itemid=291&fb_action_ids=4629257606279&fb_action_types=og.recommends&fb_source=aggregation&fb_aggregation_id=288381481237582

Names still available on line. Will pm you.

Any chance it could be a CMV infection? That can cause a mono type illness. http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001594/

While I think there are a lot of great hooks in this story for the media, which has not yet bitten, it's great to have yet another in the form of OCD Awareness Week. Thanks for letting us know.

Yes--it would be great if as many as possible could do a couple of posts a day on BCH's Facebook. I fear that without the constant trickle of news we were getting before the gag order, people find it less compelling to post, precisely what I think BCH hoped to achieve with the gag order. As the number of posts dwindle down it becomes harder for those that have kept it up to continue posting--many consecutive posts with the same name don't look good. It'd be nice if our posts could be interspersed with others.

BCH's gag order seems to be working from their point of view. Posts on their Facebook page have slowed to a trickle now that we are no longer getting updates from Beth and the family. Could I encourage everyone to continuing posting to their page? The initial heavy stream was very effective in getting BCH to make not one, but two posts about how much they care about every child, even those with PANDAS/PANS. Hate for them to think the heat is off so they can now rest on their gag laurels. Posts using names are taken down, but you can refer to the girl and her family etc. Comments are mainly coming through the "Post" section in the top left hand or the "Recommendations" section. This is from a person who'd never been on FB before....am impressed that public outrage through FB postings got them to make even one public statement.

Touche! Unfortunately, the laest person to raise this with me is green to the hilt and a huge eco-activist--positive all her meat is uber-organiz if she eats it at all.

I am sure you are right that c. difficile is the bigger risk for our kids taking long-term abx. Unfortunately, the nonPandas public (including friends I've spoken to) are not focused on risk to our kids, but rather risks to the broader community arising from our kids taking long-term abx that could contribute to abx resistant infections among others. What I'd like is a good convincing response that our kids' treatment for Pandas is not putting the community at risk by contributing o abx resistance. Would love to hear from anyone with a good response! By the way--I thought Swedo said abx for 3 to 6 weeks--not 3 o 4. I went back to the conference notes that I thought had this, but find no mention one way or the other. I like 6 better than 4!

There is a very samll device for measuring heart rate and blood oxygen that is sold to help asthmatics. A friend gave my daughter one following three attacks in July that I failed to recognize as asthmatic (this can be very hard to recognize without certain devices). I think you can buy at Walmart or similar--may be $40 or so. A bit pricey, but I wouldn't trust myself trying to do a pulse.

What is the best way to contact Lynn?

Does anyone have good talking points on why giving our kids long-term abx does not contribute to abx resistance? I have spoken to a few people outside the Pandas world and one of their first reactions is to agree with with yhe huge hesitation of doctors to give long-term antibiotics because of the danger of it contributing to an increase of infections resistant to abx. Given the new public focus on Pandas because of the Boston situation and the loud calls of those posting on BCH's FB for giving the child the abx BCH withdrew, it would seem we would all benefit from having arguments at the ready as to why long-term abx for our kids does not promote abx resistance, or does so only in an extremely marginal way. Here are things I can think of: 1) Pandas/Pans is a rare disease, so the number of kids we are talking about is very small in the scheme of the greater community. 2) Even within the Pandas/Pans realm, a majority of kids will be helped by fairly short-term abx and will not need long-term abx (true?) so we are speaking about an even smaller subset within this rare disease. 3) Pandas/Pans is related to two other rare diseases, Rheumatic Fever and Sydenham's, where the long accepted medical practice is not just to treat with abx, but also to put them on prophylactic abx until they are 21. Is there any argument from the treatrment side that not fully treated the infection with abx actually promotes the development of abx resistant infections? That would be very helpful if one could make it. Any other or better arguments would be most welcome. Thanks, Ko's Mom

Tpotter, Very interesting about Landau Kleffner. I think this should have been suspected in my DS many years ago, but perhaps awareness back then was very low. DS slaways scored much higher on expressive language than on receptive language, which was close to rock bottom before a lot of intensive language therapy. How bad? Let me just say my husband and I could discuss possible Christmas presents for the kids with him in the room when he was 6 or 7 without worrying about giving anything away to him. Typically, in just about anyone, our receptive vocabulary is much larger than our expressive vocabulary. The tests of course adjuust for this. When receptive language scores are much lower than expressive it means that the child is able to express most everything he can receive, an unusual state. His dx was central auditory procesing, given by language therapists. We never discussed this with any doctor, but just treated it with language therapy. As I posted earlier, Fast Forward allowed him to make great leaps in auditory processing and receptive language. I agree that Tatoo Mom should at least rule out LKS with an overnight EEG. If I had known about this way back, I would have pressed for this with my DS now that you have enlightened me. Ko's Mom

Hayley, Yes--a press relese would have been good. Too bad Beth couldn't have got that out before the gag order. That would have given a name for the press release. Who would do a release now? The FB page seems to be run by Pandas Resource Network; perhaps a release could be issued in their name. I'd think one would need people who could serve as press spokespeople--the press needs to know who to contact and that has to be on the release. Some of the extended family seem involved--perhaps they could do this, although not everyone is suited for this role. They would be good for inerviews, definitely. Unfortunately, it seems to come down to Pandas parents not being very organized--way too preoccupied with just getting through the day with our kids!

Stacey, I am hoping someone here with more abx experience will chime in. My DS never had regression while on abx. But I will say that about six days after my DD started abx (Clindamycin) in August she had a huge meltdown. I had to call the ambulance, which took her to the ER and she consented (over 18) to go to the psych unit. It was so discouraging....but people on this board suggested she could be having a herxheimer reaction. When kids have this, as the infection is killed off there can a temporary great worsening in symptoms. That was hopeful for me, and I think it was correct. She has made steady progress since then. Ko's Mom