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Everything posted by kos_mom

  1. i tried but had problems getting registered on the site. He chose the weirdest assortment of Pandas article as cites! At least one of the commenters put up the nimh article.
  2. Here is the longer paper http://pandasnetwork.org/wp-content/uploads/2012/02/2161-0665-2-113.pdf And here is the shorter reference http://intramural.nimh.nih.gov/pdn/web.htm The FAQs really need to come down--they must be at least seven years old. Ko's Mom
  3. obviously, any strategy that would limit access to IVIG would be a bad outcome! Was thinking though that having Pandas in DCM--along with all the appropriate treatment options--would limit Pandas/Pans kids from getting all those squirrely other dxes in the DSM.
  4. DD 19 is scheduled for IVIG in hospital Monday and Tuesday but she appears to be sick this week. Not sure if I let it all slide, go to ER to get tests done and get possible abx, or report to Dr. L--not sure what her weekend call back policies are. This Tuesday we went for interview at hospital--she was running low grade fever and had elevated heart rate--doctors found wheezing and nebulized her for asthma. She had vomited in morning with some blood (lots of vomiting going on so suspect ruptured blood vessel.) Doctors suggested she go to PCP to have blood tests run, particularly as she has hx this year of week long hospitalization for pneumonia. Couldn't coax her to PCP. Yesterday morning another low grade fever and trouble breathing--fixed with rescue inhaler. Still refused to go to PCP, but I am thinking at this point labs would come in too late to help before IVIG. Concerned she perhaps has myco p. Last night very late she comes in complaining of big time twitching--not just the head and shoulder jerks abx haven't addressed but also more full body two or so times a minute. She took haldol we had hanging around from previous psych dx,, which she says helped. No fever or twitching/jerks this mornning. Am new to IVIG--will this deal with whatever she is having or do I need to take her to ER, have them run labs and see if she has myco p or other infection that we'd start abx for? She is on clindamycin now, but I don't think that is best for myco p if she has that. Should I call and rport to Dr. L? This is our last chance for IVIG covered by insurance--United policy change kicks in Nov. 1, so there is no way I want IVIG cancelled. Much thanks for any input. Ko's Mom
  5. Occam's razor comes to mind. It states that among competing hypotheses, the one that makes the fewest assumptions should be chosen. So our children have a bunch of symptoms. Some of these are medical and some of these are psychiatric. The approach that treats these as different diagnosable bits, with each bit requiring a different treatment, could be appropriate. But often one would be making far more assumptions than an approach that starts out saying maybe all these symptoms are tied together into one underlying illness because they all appeared within the same timeframe. Hayles recently wrote that her son has fever, rash, and tics all appearing around the same time. One of the doctors is quite adamant on dxing Tourette's, and seems quite content to have the other symptoms receive a separate dx apart from that. The medical version of Occam's razor is one I have now had two Pandas neurologists tell me about with regard to my DD's myriad symptoms: it is far more likely that she has one thing than that she has multiple things. Dr. L thinks that one thing is Pandas and is going after that, but if after IVIG weren't not seeing improvement of the sx abx didn't reach, she'll revise. Those of us that have had to go from doctor to doctor in the mental health system only to get an alphabet soup of dxes and a smorgasbord of psych meds that don't work,intuitively feel something that is exactly the opposite of Occam's razor is going on and it just doesn't make sense. Can my child, of all the children in the world, really be all that complicated? We are not doctor shopping; we are searching for Occam's razor.
  6. Your link didn't work for me. I found this one: http://online.wsj.com/article/SB10000872396390444273704577633412579112188.html Nancy raises an interesting point. It is indeed easier to get a new dx into the DSM because of clinical reliance. At some level, dx of PANDAS/PANS also relies on the clinical picture. Why should we not be trying to get it into the DSM instead of trying to get it recognized as a new medical illness or accepted variant of an existing one like Sydenham's? The symptoms are similar to other illnesses in the the DSM and the entry could note the applicable tests and best course of treatment--abx, IVIG etc in coordination with other medical doctors from immunology, neurology etc. and then describe the psychiatric standby supplemental treatments--SSRIs, anti-psychotics, ERP. Psychiatrists are treating these kids and in some cases very expertly--Dr. M, for example, and Dr. G. Psychiatrists may be way more open to this illness and getting it into the DSM would provide good ammunition for dxing by the frontline people who see these kids--pediatricians, counsellors, and therapists, in addition to psychiatrists--and, more importantly, pave the way for more kids getting appropriate treatment. There is no rule that I am aware of that only disorders that can be treated with psych drugs and therapy can be included in the DSM. PANDAS/PANS is a lot more real than this vague sounding Disruptive Mood Dysregulation Disorder. Maybe some of the kids identified with this actually have Pandas.... I know there are those out there who might not like this idea because they want it identified as a medical illness, not a mental illness. But the more I think about it the DSM route looks much more winnable and pragmatic than trying to convince masses of skeptical nonpsychiatric doctors who think our kids have some mental illness (they decline to specify which one) that we are not willing to accept. And in the end, guess who's done the work on this? Not the NIH but the NIMH> Would enjoy someone poking holes into this line of argument. Ko's Mom
  7. Could you describing the walking problems a bit more? My DD started complaining of leg pains, then knee pains, and finally after months of walking with her knees inward, hip and back pain. We got a lot of somatization type indications from the pediatrician and the orthopedist she kept sending us too. Finally, when she could barely walk half a block and then only with the smallest pigeon-toed steps, or get up the stairs, she ended up at a neurosurgeon who promptly identified her extreme spasticity in her legs and accompanying hyperreflexia--these are not associated with somataform disorders. Dr. L's working theory is that it is all associated with her Pandas--we are doing IVIG and will see where we go from there. If you do a search you will find leg and knee pain can be associated with Pandas--it is very common in the sister disease of rheumatic fever. Dr. L said DD is definitely not the first patient she's had with extreme difficulty walking. Will add that DD has significant nausea, vomiting problem as well, which Dr. L feels may be connected to the Pandas as well. Conversion disorder is usually a very unhelpful diagnosis and you will get no treatment to deal with it even on its own terms. My daughter got this dx sometime ago in connection with seizures (positive EEG from local epileptologist but famous hospital was unimpressed and said conversion disorder). So I looked up what to do about this and found a great article about successes in treating it with community based resources. It was written by a doctor at our local children's hospital. So I wrote him asking what programs he could recommend in our city for conversion disorder thinking of course that he had based his paper on resources local to us. I never heard back. So one wonders if this was a conceptual piece written to look like it was based on actual experience. Very frustrating to have papers say this or that can be treated in this way and we've had great success and then you find the treatment they describe is not available anywhere, perhaps was never available to the public, and was perhaps just devised for a few month period for purposes of writing the paper but they don't sctually say that. All very misleading intellectually. It may sound extreme, but how about a wheelchair for your DS--then the school would have to deal. A lesser step would be a cane.
  8. Science Based Medicine posted an artile on the EW situation called "A Pandas Story." It is worth reading if only to hear the point of view of a self-described skeptical doctor, a Yale neurologist, who appears to have heretofore known nothing about Pandas. That said, it doesn't project a view most anyone on this board would agree with. http://www.sciencebasedmedicine.org/index.php/a-pandas-story/#more-23161
  9. I understand that puberty takes care of it for many in terms of new exacerbations. This is largely because some 98% of people become immune to strep by the time they are 12 per Swedo. Of the remaining 2%, many become immune by 18. I hate to be discouraging on this, but I have two kids over 18 who are still getting strep and coming down with symptoms. I think the tendency to not get the immunity may be inherited. My mother had strep at least once if not twice every year of her adulthood. (My kids' paternal side is significant for rheumatic fever. In the words of my DD they lost they genetic lottery.) Dr. L said my kids were way too old to be getting strep and giving it too each other...not that it wasn't happening, just that the odds are tremendously against.
  10. On October 2, it was agreed to reconvene October 23. Court dates can change of course.
  11. I can't believe the National Health is so strapped for funds it is rationing rapid strep tests. In the US anyone can order them off Amazon for about $35 for 25 tests. Perhaps you can buy them off the shelf in the UK as well. It doesn't help of course if it's negative and you need the 72 hour culture--for that you do have to see a doctor.
  12. My daughter had petichiae just as you describe. The ER doctor had dx'ed her with strep, the pediatrician said it wasn't and theorized it was Ebstein Barr, although DD had had that before. Strep can have the symptoms you describe, although it is not a very common presentation--it is unclear to me whether in this form it may be a type of scarlet fever. Petichiae will appear in about 5% of EBV, and there are other viruses that cause it. Your son definitely needs a throat culture to rule out strep. I would not leave the office without a rapid strep, followed by a 72 hour culture if negative.
  13. Congratulations! We'll be doing IVIG there next week.
  14. Just to note that this month has been particularly bad. A lot of her patients are trying to get IVIG before the United month end deadline for IVIG coverage. She is pretty covered over doing doing peer to peer and other insurance reviews to get the coverage for patients before November 1.
  15. airial, I hope I didn't give the impression that I believe people here have doctor shopped for Pandas because they wouldn't accept a mental health dx. I agree, though, that some from the outside may well have that view. My point is that I am sure many like me accepted a mental health dx but couldn't find any treatment that would work or stick and so had to "doctor shop" within the mental health system with very unsatisfactory results. There are only so many times one can hear one's child is "complicated" as the explanation for why nothing is working! Amazing how much more straightforward the problems became once a Pandas dx was considered. Ko's Mom
  16. Just a comment about doctor shopping because we are in denial about our kids' mental health issues. I was willing to accept my child had a mental health issue--this was before I even thought of the Pandas possibility. The first psychiatrist ran through medication after medication and nothing worked. Then we went to the psych ward of a major hospital for a week and they said conversion disorder (officially adjustment disorder) so we stopped the medication. The hospital said she needed a therapist. That lasted about a year and the DD felt it wasn't doing any good so I couldn't get her to go there and it stopped. I then tried her in four different programs--she wouldn't go after the first time to any of them, except for one she actually made three times. She went back to first psychiatrist. She tried medication for anxiety, medication for bipolar and again none of it had any effect so maybe she was borderline. DD self-admitted herself to a psych ward at a local hospital for one night and the next day she said the had to go. Finally, she agreed to see a new psychiatrist, whom she still sees occasionally. (Her comment, "He isn't stupid.") My point is the enormous amount of doctor, therapist shopping I had to do as someone who clearly was not in denial about my child's mental health problems. I do think people believe we are doctor shopping until we find someone who says it's not a mental health problem, it's an infection. Well I am one who wasn't in denial, and had to go from doctor to doctor and therapist to therapist without any of them giving a real diagnosis--anxiety was eventually identified but then it was suggested it was co-morbid with a bunch of other things without any of them really hitting any nails on the head in terms of explanation and, more importantly, no treatment that made a dent. I had a DD who pretty much did not leave the house for a year except for doctor's appointments, had huge anxiety and panic attacks, was constantly throwing up, and was barely able to walk. As someone who has seen a lot of the mental health system, I can tell you that you are lucky if you get a decent diagnosis and without that you are not going to get decent treatment. Doctor shopping is pretty rife among those with mental health problems. I didn't doctor shop a Pandas specialist, she in a way came to me. I took my DS, long dx'ed Pandas by NIH, to Dr. L and she is the one who suggested I bring in DD based on the list of symptoms I gave her in the family history part of the interview and the high percentage of siblings with Pandas. DD is now diagnosed and being treated for Pandas and her anxiety, which had completely overwhelmed her life is mostly gone--there are some others things still hanging about that we hope IVIG will help.
  17. There was this story in an online Boston journal: http://bostinno.com/2012/10/12/elizabeth-wray-boston-childrens-hopsital-custody-battle-pandas-pans-disease/ The reporter clearly did speak to the grandfather. But he wasn't the one who lost custody; reporters are shut out of talking to the direct sources by the gag order and HIPPA. But still, one would hope someone would dig up the gag order, which should be publicly available as it doesn't involve a minor like the custody order does. That at least be one bit of hard documentation that could help a reporter do a story without resorting to hearsay, which is all the press would have to go on at this point.
  18. http://fightingpandas1.blogspot.com/2012/10/elizabeth-wray-scandal-protested-at.html#!/2012/10/elizabeth-wray-scandal-protested-at.html
  19. stiv mommy, I don't think any of us can vouch for the non-US doctors on this list, but it shows providers in Italy, Denmark, and the UK. http://www.savingsammy.net/providers.php Another option would be to do a telephone consult with Dr. K (who will also respond promptly to emails sent by parents, not medical providers) or Dr. T. Their names are listed on the sticky thread that explains abbreviations. Dr. K is from Croatia, I understand. Ko's Mom
  20. Been through this. DD hid it from me but it began six years ago when she started an intractable yet symptomless sinus infection, which went undiagnosed for at leat six months and took two sinus surgeries thereafter to sort out. I don't think she has ever been was a chronic cutter, but in any case she stopped it until last year when she went through occasional bouts (likely from high anxiety from undiagnosed strep, which her brother had). This year when she finally received abx for Pandas we had what appears to have been major herx with brief resumption of cutting, suicide attempt, and week long stay in psych ward (her choice--over 18). Once that was all over, her big time anxiety has just about died away and there has been no more cutting that I know of. I too will never understand cutting, but I think it helps them deal with their high levels of anxiety. In light of my personal experience I wish we'd had her tested for Pandas six years ago--her brother had long been diagnosed. It could have saved her and us a lot of grief. It certainly would do no harm for this family to test for Pandas and could do a lot of good.
  21. stiv mommy, What kind of doctor was the physician you saw in Milan? I looked up Iperico and it is what we call St. John's Wort, an herb that is said to have anti-depressive properties. I can't imagine it has any use at all for PANDAS. Before you pursue IVIG, which could be very difficult to obtain in your situation, I'd recommend you find a way to get your son antibiotics and see if there is an improvement in a month or six weeks. Is it possible to have your doctor test your child for strep, mycoplasma pneumonia, and ebstein barr virus, as well as lyme disease? For strep you need to do both the cultures and the titers as well as antiDnase B (I understand this latter test may not be so common outside the US, so you might not be able to get it). If he has any of these infections, try to get your doctor to prescribe antibiotics. Ko's Mom
  22. Laurie Lee, Just so you know--about 10 percent of PANDAS children present with hallucinations; the mother delusion seems a variant of this. I second your getting a PANDAS specialist as soon as possible--constance vigilance will help keep your child well. Ko's Mom
  23. Does anyone have any ideas on how we could get NIMH to take these down? They are sadly out of date. I have seen web activity posting this information to support BCH in disagreeing with antibiotic treatment. http://www.nimh.nih.gov/health/publications/pandas/pandas-frequently-asked-questions-about-pediatric-autoimmune-neuropsychiatric-disorders-associated-with-streptococcal-infections.shtml Relevant bits: What are the treatment options for children with PANDAS? The treatments for children with PANDAS are the same as if they had other types of OCD or tic disorders. Children with OCD, regardless of whether or not their illness is strep. triggered, benefit from cognitive behavioral therapy and/or anti-obsessional medications. A recent study showed that the combination of an SSRI medication (such as fluoxetine) and cognitive behavioral therapy was the best treatment for OCD, and that medication alone or cognitive behavioral therapy alone were better than no treatment, or use of a placebo (sugar pill). It often takes time for these treatments to work, so the sooner therapy is started, the better it is for the child. Children with strep. triggered tics should be helped by the same tic medications that doctors use to treat other tic disorders. Your child's primary physician can help you decide which type of specialist your child may need to see to receive these treatments. Can penicillin be used to treat PANDAS or prevent future PANDAS symptom exacerbations? Penicillin and other antibiotics kill streptococcus and other types of bacteria. The antibiotics treat the sore throat or pharyngitis caused by the strep. by getting rid of the bacteria. However, in PANDAS, it appears that antibodies produced by the body in response to the strep. infection are the cause of the problem, not the bacteria themselves. Therefore one could not expect antibiotics such as penicillin to treat the symptoms of PANDAS. Researchers at the NIMH have been investigating the use of antibiotics as a form of prophylaxis or prevention of future problems. At this time, however, there isn't enough evidence to recommend the long-term use of antibiotics. The FAQs contradict the much more recent information NIMH has posted (link below) in the context of its current recruitment for the IVIG trials. Having both these out there coming from the NIMH is confusing to the public, which has been wakened a bit to the issue. Worse, they do a Google, find the FAQs, don't search any further and voila the PANDAS parents are whacko. http://intramural.nimh.nih.gov/pdn/web.htm
  24. EA Mom, Whoever has the idea of taking a page from BCH's book and posting PANDAS kids success stories in a style similar to the write-ups the site feature of their kid success stories (along with pictures of super-cute Pandas kids) was brilliant. These posts are extremely effective--I'm going to go in and like every one of them! Ko's Mom
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