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lfran

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Posts posted by lfran

  1. Would you mind sharing what your "very high D2" levels were?

     

    My DS8 had a D2 level of 32,000, a cam K of 139 and everything else at the top of normal range.

     

    Thanks.

     

     

    Thanks. This was, I think, our last appointment in our six year relationship. I won't go back. I will just have to drive an hour one way (and then 5 hours one way after we move this month!) to see Dr. Lin as our pediatrician from now on? The most amusing part was, after saying this about the CaM test, I mentioned that the other titer tests will come back in a week or so (anti tubulin, lysoganglioside, D1, D2), and he said, "Send them to me. I will want to see those."

     

    When we went to see Dr.L w/ a very high CamK (242), that number intrigued her, but she felt that she couldn't make treatment decisions based on that, however, she felt that the very elevated antiD2 was something that she could "hang her hat on" because it was very clear, study or not, that high antineuronal antibodies just should not be there and, so she could justify treatment based on that finding- so, I kind of see why the doc might be more interested in seeing those- as an indicator of autoimmunity.

  2. Is Dr. Mullen also a pediatrician? I would love to find a ped. who is also PANDAS literate.

     

    We are in So. Cal, so Burbank would be great. Do you recommend her?

     

    Thanks.

     

    (And anyone else, a recommendation for a PANDAS literate ped in Pasadena/Glendale/Burbank/Duarte.... would be awesome.)

     

    Thanks!

     

    My advice is- If you are thinking of cutting back, just cut out one thing at a time and try to have an objective measure of behavior for several months before you remove another element.

     

    I highly agree and be sure to leave a significant amount of time in between.

    I do not feel that supplements are a complete waste. Even if it turns out that, for example, the omega-3s didn't help with the pandas, it certainly is very good for your child. Many people with no health issues see these benefits and take omega-3s, probiotics, antioxidants, vitamins, etc.

    A Pandas doctor, Dr. Nancy Mullan, in Burbank CA would respectfully disagree with the doctor who states that supplements will not help with PANDAS. She feels strongly that natural remedies are far more effective. A lot of theories and opinions... leaves us in the middle without any studies to show us the way. Good luck.

  3. My advice is- If you are thinking of cutting back, just cut out one thing at a time and try to have an objective measure of behavior for several months before you remove another element.

     

    I highly agree and be sure to leave a significant amount of time in between.

    I do not feel that supplements are a complete waste. Even if it turns out that, for example, the omega-3s didn't help with the pandas, it certainly is very good for your child. Many people with no health issues see these benefits and take omega-3s, probiotics, antioxidants, vitamins, etc.

    A Pandas doctor, Dr. Nancy Mullan, in Burbank CA would respectfully disagree with the doctor who states that supplements will not help with PANDAS. She feels strongly that natural remedies are far more effective. A lot of theories and opinions... leaves us in the middle without any studies to show us the way. Good luck.

  4. That's wonderful.

     

    What part of the country are you in?

    My pediatrician was fascinated and after reading both studies, he called Dr. Cunningham (who he said is a very smart lady) and spoke with her about the implications. She told him it was like rheumatic fever of the brain and referred him to dr. Latimer w/ his questions about treatment. Dr. L spent about 20 minutes talking to him on the phone (he said she was very kind and extremely helpful). Then he set about finding local specialists to help with treatment. And since he also teaches classes at an osteopathic school of medicine, he presented my daughter's case to his students as a case study. He was also very excited because he recognized that he has a couple of other patients with PANDAS who he knows how to help now, as well.
  5. Thanks for both the answers!

     

     

    How do you switch from one antibiotic to another. For instance, DS8 is on 500 mg azith a day, taken at bedtime. How do I switch him to Augmentin? Wait a day in between or just stop one and start the other the next day? I would want to start Augmentin in the morning, so I could monitor for any reaction. So, for instance, take azith at bedtime on Saturday and start Augmentin in am on Sunday? On Monday? Or ...?

     

    I'd appreciate advice from anyone with either personal or medical knowledge.

     

    Thanks!

    The pharmacists instructed me. Starting the new one the next day was the easiest. But she instructed me also on how to switch the same day. I needed to wait a certain amount of hours between the azithromycin and the augmentin. I think it was 10 hours. When I later asked the doctor he was not nearly as picky as the pharmacist. I would definitely not skip a day... My child can backslide quickly.

    May

  6. How do you switch from one antibiotic to another. For instance, DS8 is on 500 mg azith a day, taken at bedtime. How do I switch him to Augmentin? Wait a day in between or just stop one and start the other the next day? I would want to start Augmentin in the morning, so I could monitor for any reaction. So, for instance, take azith at bedtime on Saturday and start Augmentin in am on Sunday? On Monday? Or ...?

     

    I'd appreciate advice from anyone with either personal or medical knowledge.

     

    Thanks!

  7. Here's a sort of FAQ (well, it's not frequent, but it is a question!) and a couple of others.

     

    1) My DS8 showed a total stop of symptoms after a MAJOR blood draw -- not a couple of tubes, but a lot, because a couple of different drs had ordered tests and they all added up. If PEX removes antibodies, how about the idea of therapeutic phlebotomy to also diminish the level of antibodies? Might have to be repeated every couple of months, but a lot less invasive and a lot less expensive than IVIG or Pex.

     

    2) Also, there has been talk about whether probiotics with strep strains in them are okay.

     

    3) What to do about asymptomatic family members who show high titres.

     

    Thanks!

     

    I was going over the current FAQ to see if there were things missing that should be added in.

     

    http://www.latitudes.org/forums/index.php?showtopic=6266

     

    Anyone have questions that have come up over past few months that we need to roll in.

     

    Some I've seen have been:

    1) Why do I see exacerbations with illnesses other than GABHS?

     

    2) What is the accuracy of a strep throat culture (rapid or AGAR)?

     

    3) Is blood work more accurate than a throat culture?

     

    4) If there's no ASO rise, is there still an anti-neuronal antibody rise?

     

    5) What's the difference between colonization and infection? Why does it matter?

     

    6) Is there a good way to chart symptoms to make it easier to be objective?

     

     

    Others?

     

    Buster

  8. We saw Dr. Gupta a few years ago and found him quite unhelpful.

     

    I would look elsewhere.

    I know this is subjective because everyone will have their favorite but I was wondering if people could give advice on which Dr. might be the most open to helping me with my 2 1/2 yr old daughter. We've had some bad experiences lately with dr's refusing to believe my daughter has any problems and I don't want to waste my time with any more of that nonsense. :) Our primary physician has been very helpful and he was the first person to bring up the PANDAS issue but I really think I need to see someone who specializes in PANDAS. We have been using azithromycin for almost 2mos now and are seeing moderate results, which I'm grateful for, but I kinda feel like I want to make sure we are doing everything we can. Our Dr. suggested we consult with Dr. Gupta here in SoCal but I haven't heard the best reviews on him. Any advice would be greatly appreciated.

    -Amber

  9. Have you considered the possibility that you might be lactose intolerant? I had diarrhea (non bloody) multiple times a day for years until I realized I was lactose intolerant (and there is lactose/dairy in many things, including bread, that you might not suspect). Now I take lactaid pills (available from the drugstore, over the counter) whenever I suspect dairy or lactose and I have diarrhea only a couple of times a year, when I misjudge. Definitely worth investigating -- since you can test yourself with a simple drugstore purchase.

     

    Also, hypothyroidism can present with constant and chronic fatigue as your only symptom. It did for me. You migth ask to get your thyroid tested-- you want to have TSH, free T3 and free T4 tested, as some people can have normal TSH but still be hypothyroid (and that's what the T3 and T4 will show).

     

    Make them tell you your results, not just normal or abnormal. A lot of family doctors think any TSH above a 4.0 is fine, but most patients (and some specialists) will disagree. I always fee lousy unless my TSH is 2.0 or below -- and that's true for a lot of other people.

     

    Hope this helps!

     

    -- Lfran

     

     

    I looked up Chron's Disease on Wikipedia. I have random spurts of abdominal pains, 10-20 times a day. They last for a few minutes each but they're so debilitating that I can't move during them. I do have frequent diarrhea, but never ever blood. I don't have weight loss or growth problems. I'm 15, 5'4", & about 120 pounds. I think that's pretty normal. As far as eye problems go I used to get styes about once a week from when I was nine until about thirteen, but they went away when I would eat a large mango (vitamin D). It's always been suspected that I'm anemic but I've never actually been tested. I bruise easily, am CONSTANTLY tired no matter how much or little I sleep (although it's hard to say whether that can be chalked up to anemia or my Narcoleptic symptoms. Maybe both?) & when I got blood drawn in September (it may have been August or November. I can't remember exactly.) I could hardly make it to the car because I was falling asleep. I have always had really bad headaches, particularly in the morning but they can come all throughout the day.

     

    I'm not sure if it could possibly be related at all, but I had to have an emergency appendectomy when I was eight years old. My pains started in early March & after my pediatrician told us twice that it was just a stomach virus (specifically assuring us that it was NOT appendicitis), my family pretty much told me to suck it up. By June I was throwing up twenty times a day, couldn't walk, was malnourished/dehydrated, & had lost thirty pounds. While my Mom was away in New York for business & my stepdad was at work my Grandma took me to the hospital where they found that my appendix had been ruptured for weeks. I was operated on & admitted for about a week.

    I don't exactly know when these stomach pains started, but it was at least a year after the appendectomy. They feel absolutely nothing like the appendicitis or any of the recovery pains. I've had an "upper GI" test but it was so long ago that I honestly can't remember what it was for, specifically. All I remember was that it came back inconclusive. I just included that anecdote to ask if that possibly could have had anything to do with the onset of Chron's?? I don't know why/how the appendectomy would be related to my stomach pains, but I always feel the need to include it when talking about them just in case. The pains aren't even really near my scar, but like I said. Just felt the need to include that.

     

    [added a few minutes later. That's why it says I edited it.] I've also never had any problems with sores. What kind of doctor would I go to to get tested??

  10. If you guys have specific info about a texas doctor or who to see at Tx children's hospital, if you haven't already, would you post it to this post

    http://www.latitudes.org/forums/index.php?showtopic=8636 , where a 15 year old boy from Texas is trying to seek better treatment for himself.

     

    Thanks!

     

     

    Wow, I have always wondered if my dd's RSV when she was 4 months old might have the been the start of it all. I wonder now if she had strep? They of course didn't check. Her first tics started just a little after that but I didn't realize that they were tics till later.

     

    That is great about TX Children's. I love my Dr's i have here in Austin, but they don't believe in long term ABX so I would love someone who would prescribe that for my children.

     

    Melanie

  11. We contacted Dr. Trifiletti by phone and email and he was fantastic. Responded immediately, held a telephone consultation, and prescribed meds and lab tests that we could start right away.

     

    I have heard from others that he prefers meds over IVIG. I don't know if that's true. Since I don't want to go the IVIG route at this point, that was fine by me.

     

    Here is his contact info.

     

    He is in New Jersey, so "doable" from Cincinnati if needed. The Jersey Shore in summer is lovely (IMHO, but I'm from there!), if you need an excuse to go there.

     

    http://www.site.neurokidsr.us/

     

    -- lfran

     

     

    Hello All,

    Some of you might have read my recent regarding locating a doctor in the USA. As I mentioned before, I am living in Saudi Arabia and my 10 year old son seems to fit the PANDAS diagnosis, although he has not been officially diagnosed and has not yet received any treatment other than psych meds from a doctor here. Recently, he was in a bit of a remission and then he was sick with high fever followed by skin rash and all his symptoms, especially severe anxiety, have come back. This is when I started looking for a doctor in the US. I contacted two doctors by email, asking about a possible telephone consult. Both doctors responded promptly, but I had decided to talk to Dr. K because he is in Chicago, which isn't too far from my family in Cincinnati. He asked me to call his secretary to make an appt. However, when I called her, she immediately told me that it would cost 500USD, which is fine, but then she went on to say that they ONLY accept a check or money order. I explained to her that I am outside the USA and it would take a long time for a check to arrive, couldn't I pay by paypal or something. She said no, and that it would most likely take AT LEAST 10 days anyway before Dr. K could even speak to me. I told her that my son is currently having a severe exacerbation(he has stopped eating again)and I wanted to talk to Dr. K quickly to see if there are any labs etc...I should have done while he is in the middle of an exacerbation or even bring him to the US. Her response was, "what makes you think he has PANDAS???" . I have to say I was a bit put off by all this. So, she then suggested that I email Dr. K again and explain the situation and see if he has any suggestions on what I should do ( wait around for a telephone consult, come to the states, etc...) I did email him right away, but so far no response. However, I just sent the email so he probably hasn't seen it yet. The problem is that since my son has stopped eating I am going to have to take some kind of action soon. His psychiatrist said we will be forced to put him back on antidepressants if he doesn't eat. He just got off them a couple months ago. I was hoping to get a quick treatment plan and maybe avoid that. Now I am not sure what to do. Is it always this difficult??? Anybody out there a patient of Dr. K??? I am not sure whether to wait it out for Dr. K or try the other doc??? Any suggestions?? Thanks!

  12. Just wanted to post that there are 4 of us in the family, and at least 3 of us have elevated DNASE and ASO levels.

     

    DS8 is PANDAS, with elevated DNASE (but usually normal ASO). DS6 has high DNASE and high ASO titers -- actually higher than DS8 (and negative cultures and no strep throat as far as we can tell, ever).

    Just found out that I also have somewhat elevated levels: ASO is 211 an DNASE is 240.

    DH results are pending.

     

    Thinking of testing that cat.

     

    Any thoughts out there? I'm guessing we should try to clear all of us.

     

    Thanks to worrieddad and others who posted about testing family members. Who would've thunk?

     

    lfran

  13. Thanks. They were on his lip -- it was about a year ago and cleared up after few days.

     

    I was just wondering.

     

    -- lfran

    Ifran,

     

    I guess I would say no. It was just a clear watery discharge. Does your son have psoriasis or other dermatitis? Were the blisters on his face or elsewhere?

     

    Deby,

     

    Don't worry about not understanding! I wrestle with this stuff all of the time and still don't understand a lot either.

     

    As you can see below, antibodies are thought to activate calcium-calmodulin dependent protein kinase in PANDAS so I'm wondering how abnormal activity of a "calmodulin-containing enzyme," factors in to both conditions?

     

     

     

    http://www.ncbi.nlm.nih.gov/pmc/articles/P...18/?tool=pubmed

     

    Recent evidence suggests that specific antibodies targeted to the dominant epitope of GABHS (N-acetyl-beta-D-Glucosamine) might influence neuronal signal transduction thus causing alterations in behavior and movement control. Accordingly, sera from some patients with Sydenham's chorea [20] or PANDAS [21] contain antibodies that induce calcium-calmodulin dependent protein (CaM) kinase II activity.

     

    From link above (Heng)

     

    We conclude that PK, a calmodulin-containing enzyme, is involved in regulating calcium-dependent phosphorylation events in human epidermis, and disturbance of its activity may play a key role in the clinical manifestations of psoriasis.

  14. Thanks. I will try both of those routes.

    lfran --

     

    Dr. Cunningham did, indeed, have a slide with some bar graphs on it, depicting PANDAS levels of various components (DP1, DP2, CAMK11, etc.) versus control levels of the same components, etc. I believe the information on the slides is part of what will be published shortly. You might also inquire of AutismOne about purchasing a CD of Dr. Cunningham's presentation for $20 via their website; first, though, I'd make sure that the manner in which they filmed the session includes some sort of "split screen" or particular focus on the slides themselves.

     

    Lastly, I guess another option might be to contact Dr. Cunningham directly and ask if she would share her presentation. It might be that she's prohibited from doing so due to the pending publication, but it is worth a try.

  15. I can't seem to find a good picture of it, but does weeping, strep-related psoriasis look like yellow crusty blisters? My DS had that about the time of an outbreak

     

    Trying to identify what they might have been.

     

    Thanks.

     

     

     

    Thank you for sharing this.

    I had psoriasis for 20 years, since it was always very mild it never really bother me.

    My question is , if this is the root of the problem, why it happened to my son at the age of 8 and not before?

    I'm going to an immunologist (he is the head of UCLA med center) on Monday, I'll discuss this issue with him.

    Deby/All,

     

    Deby since you have an appt on Monday, I thought you might want to read some things that I've been looking at. I have had mild psoriasis for 20+ years too. About 1 1/2 years ago, I got an infection on the elbow that had psoriasis. I didn't get on an antibiotic for a couple of days after the weepy infection started. Over night, this became a full blown head to toe body rash. About a week (?) after the rash started, my head broke out in what looked like a horrific case of dandruff. I have never had dandruff in my life. I found a psoriasis web site and started reading. Lo and behold, I learned of the strep connection (altho as usual there is mixed evidence..let me know if you want to read some of my saved info) and others with the body rashes and the scalp reaction. One particular Dr. from UCLA School of Medicine has some research that really caught my attention. Here is one excerpt from her work

     

    http://www3.interscience.wiley.com/journal...=1&SRETRY=0

     

    Elevated phosphorylase kinase activity in psoriatic epidermis: correlation with increased phosphorylation and psoriatic activity

     

    Summary To determine whether abnormal activity of a calmodulin-containing enzyme which catalyses phosphorylation reactions may play a pathogenetic role in psoriasis, the presence and activity of phosphorylase kinase (PK) in human epidermis were determined in patients with untreated/active psoriasis (n=10), treated/resolving psoriasis (n= 10), and non-psoriatic controls (n= 10). Biopsies were taken from involved and uninvolved skin for PK, organic phosphorus, and inorganic phosphate estimation, and light and electron microscopy. The enzyme was present in involved and uninvolved skin of every patient in the study.
    I found another paper that talked about calmodulin being elevated (grossly) in the skin of people with psoriasis.

     

    http://www.springerlink.com/content/x6380hv01745h5j7/

     

    Calmodulin antagonism inhibits human keratinocyte proliferation

     

    calmodulin levels are grossly elevated in both lesional and nonlesional epidermis of psoriasis

     

     

    The other thing that really seems to stand out in regards to the scalp outbreak, it seems in people with psoriasis that antibodies to this YEASTare recognizing N acetylglucosamine, the same component of the strep wall that has been found to be recognized in PANDAS.

     

    http://www.ncbi.nlm.nih.gov/pmc/articles/P...ei0105-0079.pdf

     

    Antibodies from patients with Psoriasis recognize N acetylglucosamine terminals in glycoproteins from pityrosporum ovale

     

    Something else that has been pretty interesting, the psoriasis on my elbow (probably about 4 inches from elbow down toward wrist..so no small spot) is totally gone for the first time in all those years. It resolved with the other symptoms after the outbreak. I know that there was an attack on other connective tissue subsequent to that whole ordeal tho. I had some mild pitting on my fingernails and some arthritis type symptoms in other areas that I never had before. Also, some weird little bumps, mostly on my hands, and what looks like Keratosis pilaris on my legs at times. One of the worst periods where I noticed these symptoms was right around the time the boys were sick this past winter, and my oldest son started with some fairly bad gut issues. He was diagnosed with mild gastropherisis, and scope showed evidence of reflux. I know there's more but this is the 2nd time I'm trying to post this. The first one disappeared iinto thin air and I gotta run, but will post whatever else I think of later!

  16. Someone just posted that at the AO conference, it was mentioned that high D2 levels were indicative of PANDAS.

     

    Is there any published reference for that, or a slide from the conference? That's my DS8's main elevation (twice normal) and I would like to show that to our docs.

     

    Thanks!

  17. Just wanted to put in my 2 cents that we always see a flare up when DS8 has dental work and/or is losing a tooth.

     

    I have started asking for prophylactic antibiotics before even routine dental work now.

     

    Biggest flare ever was after a tooth extraction with no abx. I talked with our dentist, and he says that for people with antibody issues, he even avoids the metal rings and latex that he uses to isolate the tooth during a filling, as that can cut into the gum and cause a problem.

     

    Just thought I'd post this, for others to consider and to mention to your dentists.

     

    -- lfran

  18. I talked with Kathy about this. She said that Dr. C's father is quite ill. I would imagine that that is taking a lot of her time.

     

    Kathy also said that you can basically compare your numbers with that of the normal mean in order to get a sense of where your child falls on the range, and look at where the cam Kinase falls on the scatter plot in the journal article that she sends out with the email results.

     

    I hope this helps.

     

    I have not gotten my mailed report either.

    Brandy

     

    It has been two months for me. Still no report.

  19. Thanks, Wendy. We live in LA and he weighs 82 pounds. I am working on getting him a higher dosage.

     

    Fascinating about the East Coast/West Coast issue. Although we are in Ca, I think he got his initial infection from a houseguest who was visiting from the midwest -- so that might add a wrinkle to the detective work.

     

    We're gonna keep trying. And trying. And trying. My husband and I getting tested tomorrow.

     

    == lfran

     

     

    How much does your son weigh and where do you live? It is my understanding Azithromycin has typically worked better for individuals on the West Coast and area's on the East Coast has had resistant strains to strep. Also, the 250 might not be a large enough dose for his size. Unfortunately, with antibiotics it can be trial and error.

     

    I would also check EVERYONE in the household for strep as you may be passing it back an forth to each other. Unfortunately, we found out after our third IVIG that my husband had high titers. Once we treated him, his titers feel indicative of an active infection so we are continue to treat him. His rapids/cultures were negative.

     

    -Wendy

     

    Hi all.

     

    DS8, PANDAS, has now been on 250 azith for 8 days. I see no improvement -- in fact, I think things are getting worse.

     

    Is this part of the sawtooth. or should I be reassessing. We have a 30 day rx.

     

    However, just got back first-ever strep titres on non-PANDAS DS6, and they were quite elevated. So, there could be strep in the house that countering the antibiotics?

     

    Any thoughts? We have a referral to an infectious disease doc coming through -- hopefully that can help us clear the strep.

     

    We are using probiotics with the azith and see no signs of intestinal problems. But, could the azith be causing a yeast surge which is making symptoms worse?

     

    Also, any thoughts on lab results? DS8 has high DNASE, a cam Kinase of 139 and all other Cunningham tests are at the top of normal range, except the anti-Dopamine 2, which was twice normal range.

     

    Thanks!

     

    -- lfran

  20. That's wonderful.

     

    We have had symptoms shut off suddenly two times. Once after a major blood draw and once, surprisingly, in the middle of a Chinese restaurant. The latter was really odd, because DS8 had been at a very high level for weeks and weeks and was very high level walking into the restaurant. Then, mid-meal, gone and stayed gone for a few weeks (no meds, no treatment, so hopefully yours will last much longer.

     

    == lfran

     

    Allie's last IVIG was 3 weeks ago. For the last 2 weeks, but especially the last one things have been pretty rough. Lots of SIB, fixations on things that apparently terrify her but she can't let go of...

     

    But today, at @ 1:00 it just shut off. She's been calm and peaceful. She's had one of those hand held computer games since October, but has really never been ever to really play the games where you have to guide the characters through some environment. She just hasn't had the dexterity to manage it. She sat down this evening and just started playing it, and she's not great at it, but she's about as good as I am! I am so amazed and excited... Don't know how long this will last, but what a rush!

     

    So, I've heard about symptoms happening like a switch was flipped, but recovery? Has this happened with any of your kids, where symptoms just cease abruptly?

  21. Hi all.

     

    DS8, PANDAS, has now been on 250 azith for 8 days. I see no improvement -- in fact, I think things are getting worse.

     

    Is this part of the sawtooth. or should I be reassessing. We have a 30 day rx.

     

    However, just got back first-ever strep titres on non-PANDAS DS6, and they were quite elevated. So, there could be strep in the house that countering the antibiotics?

     

    Any thoughts? We have a referral to an infectious disease doc coming through -- hopefully that can help us clear the strep.

     

    We are using probiotics with the azith and see no signs of intestinal problems. But, could the azith be causing a yeast surge which is making symptoms worse?

     

    Also, any thoughts on lab results? DS8 has high DNASE, a cam Kinase of 139 and all other Cunningham tests are at the top of normal range, except the anti-Dopamine 2, which was twice normal range.

     

    Thanks!

     

    -- lfran

  22. Hi all.

     

    I was just given oral prednisone for myself (not for PANDAS) and I am having side effects that I don't like -- insomnia and increased thirst and frequent urination.

     

    Since I know a lot of people here have had PANDAS kids put on prednisone as a steroid burst, I am just curious what the dosage and time frame and ramp up/down is for the pre-IVIG protocol -- just want to compare it to what I've been taking, since I'm not real happy with my current dosage.

     

    I'm probably going back to the doc tomorrow, for clarification, but thought someone here might not mind sharing.

     

     

    Also, I am about to have my own blood drawn for ASO and DNASE titres. Anyone have any thoughts if being on short-term prednisone will affect that?

     

    Thanks.

     

    -- lfran

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