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concerned lady

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  1. Trying again to help this young man in Brooklyn:

     

    ____________________________________________________

     

    I suspect possible PANDAS or PANDAS-like condition in a young adult (in low 30's) who has had definite strep infections, possible Lyme Disease, possible Mycobacterium avium (or other bird infections), possible viral infections, etc.

     

    He is nice, but poor, lives in Brooklyn but can take subway to Manhattan. Has no car.

     

    His insurance is Amerigroup (crappy, but it's all he has).

     

    He tried to see Dr. Najjar, but the patient's insurance wouldn't allow it. And, Dr. Najjar won't take the patient on, as a charity case.

     

    Can anyone recommend a good PANDAS & LYME literate doc somewhere in NEW YORK CITY (Brooklyn or Manhattan) who DOES take poor patients' insurance &/or who takes on charity cases?

     

    Thanks in advance.

     

    Carol Sidofsky (former nurse/RN, former VCD/vocal cord dysfunction patient)

    cell: 970-531-5000

    email: fsds@rkymtnhi.com

  2. I suspect possible PANDAS or PANDAS-like condition in a young adult (in low 30's) who has had definite strep infections, possible Lyme Disease, possible Mycobacterium avium (or other bird infections), possible viral infections, etc.

     

    He is nice, but poor, lives in Brooklyn but can take subway to Manhattan. Has no car.

     

    His insurance is Amerigroup (crappy, but it's all he has).

     

    He tried to see Dr. Najjar, but the patient's insurance wouldn't allow it. And, Dr. Najjar won't take the patient on, as a charity case.

     

    Can anyone recommend a good PANDAS & LYME literate doc somewhere in NEW YORK CITY (Brooklyn or Manhattan) who DOES take poor patients' insurance &/or who takes on charity cases?

     

    Thanks in advance.

     

    Carol Sidofsky (former nurse/RN, former VCD/vocal cord dysfunction patient)

     

    cell: 970-531-5000

     

    email: fsds@rkymtnhi.com

     

    website: Can't Breathe? Suspect Vocal Cord Dysfunction!

  3. Dear Family of 5,

     

    Thank you for your reply and suggestion.

     

    ----------------------------

     

    Dear Chemar,

     

    Thank you for your advice. I did call Dr. Murphy's office earlier on Tuesday, and the secretary checked with Dr. Murphy, and said that she (Tanya Murphy) only treats patients up to 18 years old, and that Dr. Murphy doesn't know any docs who treat adults.

     

    The secretary said that Dr. Murphy recommended that "the patient" could contact the Infectious Disease Department at the Univerisity of South Florida, at 813-972-2000, to see if strep etc. are problems for the patient. I emailed this advice to the patient.

     

    Sincerely,

    Carol (concerned lady)

  4. I was contacted by a young man, 33 years old, in Ft. Myers, Florida, over the weekend. He had been told 3 years ago, that he had VCD (Vocal Cord Dysfunction), which is basically intermittent laryngospasms.

     

    While asking him many questions, he said that he had had A SEVERE STREP THROAT INFECTION, about 5 years ago, with a re-occurance of the severe strep throat infection.

     

    This made me suspect he may have PANDAS or a PANDAS-like illness.

     

    He has several more health problems, and needs a really good PANDAS-knowledgable doctor, as close to Ft. Myers as possible, who can be a "team leader" in helping him to sort through all his health issues.

     

    When born, he had excess material of some kind, in his inner ear (right ear), and had to have 2 operations later on, to remove this material (at ages 8 & 19), and the operations left him with a vertigo-like condition causing him to see things moving when things are not moving, and causing the ground to sometimes appear to move in waves (when there's no earthquake happening). He said this problem was a "place & space" problem.

     

    He told me that his eyes were trying to compensate for his ear problems.

     

    He has visual migraines.

     

    He also has some kind of NECK PROBLEM(S), THAT INTERFERE WITH HIM FALLING ASLEEP.

     

    He used to be a professional drummer and singer, and like some other professional entertainers, abused alcohol (not any more), didn't get enough sleep, and didn't eat well.

     

    He is trying to do better (eats better), but is almost incapacitated by the "vertigo"-like problems (inner ear problems), and may have a SLEEP DISORDER too.

     

    From sleep deprivation, he has "hallucinations", anxiety, stress, etc.

     

    He falls, and has to be helped to stand up again.

     

    He also may have accidentally caused some nerve damage, by taking too much Vitamin B 6, until a year ago (not taking it anymore).

     

    This is a desperate patient, who said he is almost at the breaking point, who needs a good doctor to act as a team leader, to address all his health problems, and who can find specialists to help him.

     

    He was told (age 14), that he had a dysfunctional gall bladder along with a "frayed diaphragm".

     

    He was supposed to be getting thyroid gland testing yesterday, prescribed by a neurologist.

     

    I suspect he has some Obsessive Compulsive Disorder (OCD) symptoms, but it's hard to tell, because of his multi-factorial ailments plus sleep deprivation symptoms.

     

    I recommended also avoiding gluten and milk proteins, which in "gluten-sensitive" & milk protein-sensitive people, can make PANDAS symptoms worse.

     

    WHO ARE DOCTORS WHO TREAT ADULTS, WHO MAY HAVE PANDAS-LIKE ILLNESSES, AS CLOSE TO FT. MYERS, FLORIDA, AS POSSIBLE?

     

    Thanks in advance.

    Carol (concerned lady)

    cell: 970-531-5000

    fsds@rkymtnhi.com

  5. Everything you all wrote, plus Dr. T's statements, are so helpful, and worth looking at very closely, and digging into more deeply, and will help me to learn more. Thanks for that.

     

    In addition to looking for, finding, and treating the several infectious organisms (strep, mycoplasmas, lyme disease, other organisms like viruses, etc., etc.):

     

    I think it may also be helpful for Dr. T. to find out which girls and boy had been vaccinated with WHAT VACCINES, AND WHEN. (Gardasil, flu shot, other vaccinations)

     

    If more boys get the Gardasil shot, I wonder if more boys will be getting tic disorders, etc.

     

    Also, SOFTBALL FIELDS (seems to be one factor that many apprear to have in common) are sometimes built on or near OLD TOXIC DUMPS, so I'm glad Erin Brockovich's team is still looking into the Le Roy area's toxic FRACKING CHEMICALS (many are neuro-toxic) used in natural gas wells, plus the old 1970's train derailment SPILL of toxic NERVE POISONS, fairly close to the school. I hope Erin's team can get samples from soil, water, and air, right at the school, and near the Le Roy school.

     

    I hope Erin's team goes to Corinth, too, in case of similar (parallel) environmental concerns there, similar to Le Roy.

     

    Lou Gehrig, I think, from what I've read, played baseball for years, on a field that was on top of an old toxic dump, and he got ALS/Amyotropic Lateral Sclerosis, named Lou Gehrig's Disease after him. Illegal dumping of toxics into streams is also possible (saves companies money).

     

    The previous HURRICANE caused FLOODING, that may have brought toxic stuff up to the surface, more quickly, more recently.

     

    Carol

  6. I need your recommendations for a PANDAS/PITANDS/PANS & LYME literate doc for a young man (late 20's) who lives in Brooklyn, NY. He has eye tics ("twitches"), is somewhat obsessional/compulsive, and until recently, owned more than 30 pet parakeets all at one time, for many years, which birds may have transmitted 1 or more "bugs" to him (bacterial, etc.). The apartment he was in, (he's out of that one now) also had rats and various insects, including bedbugs, centipedes, and various little bugs he saw in the parakeets' food areas.

     

    He is poor, has no car, is too sick to work, and gets food brought to him by his mom. He is able to travel by subway to Manhattan. He does have some kind of health insurance, and being poor, he needs to see a doctor who takes insurance.

     

    The doctors he has seen so far, have not been able to fully diagnose him. I suspect Mycoplasma avium (from the birds), (he's being tested for this, via sputum samples being cultured) and maybe Lyme Disease (which can be transmitted by tiny ticks even from birds!). He has red marks (possible tiny bite marks) on both the front and back of him. He feels a crawling sensation at times on his skin. He worries about possible parasites.

     

    A while back, he felt better just when on a "prev pack" (minus the acid blocker). But, he felt sicker after he was done with those antibiotics, so I suspect he still has some kind of infection or more than one infection.

     

    Can anyone recommend a PANDAS & LYME literate doctor in BROOKLYN &/OR IN MANHATTAN, who can help to diagnose and treat this nice young man? His platelet count is somewhat below normal, and he lost some hair, has lost weight, and is motivated to get diagnosed and get better. He has been tested for HIV (which can infect heterosexual patients too, which he is), and he's thankfully negative for HIV.

     

    Thanks in advance for any doctor recommendations.

     

    Carol

    970-531-5000

    fsds@rkymtnhi.com

     

     

    Hi Carol<

     

    Below is an message I got from a Mom who has a PANDAS kid. Hope this helps.

     

     

    *

     

    Hi Tiffani, You mentioned that you would like to know about doctors who might be willing to come to Mass to discus PANDAS. I spoke to Ruby's pediatrician Dr. Susan Schulman. She would like to do anything to help spread the word to other docs. You can reach her at susankschulmanmd@gmail.com

    She is a very lovely and caring woman who has a very interesting story to tell about all the PANDAS kids she see's in her practice. She was interviewed for the Parents magazine article about PANDAS. You can tell her that you got her name from Ruby's mom.

    Sherri

     

    Thank you, Tiffani for your messages (got the email one first)! I sent an email to Dr. Susan Schulman, and hope she has a recommendation for me. I haven't yet been able to get to Dr. Najjar at NYU Langone, as LaurenK suggested. (Dr. N's secretary is often away from the phone, so I'll have to call back & leave a message).

     

    If the young man weren't poor, and had a car, and had someone to drive him since he's sick, I would have recommended he see Dr. Schulman. He is able to use the subway system.

     

    Carol

    (cell) 970-531-5000

    fsds@rkymtnhi.com

  7. You could try Dr. Najjar at NYU Langone. Do you mean he was tested for HIV? There is no "AIDS" test I don't believe? Was HIV thought to be an issue? Why is this young man living with 30 birds?? and in such a unhealthy environment?

     

    Thank you! I will call Dr. N. today. Yes, the young man (previously gainfully employed) was tested for HIV, and was negative. He was tested for HIV, because of his weight loss over the last couple of years, weakness, and I think that testing was a routine thing they test for when they don't know what's happening with a young man.

     

    The birds were pets of his and his mother, since he was a teenager, when they started out with just 2 (a male & female parakeet). His mom was a single mom, originally coming from a European country, and she came from a somewhat dysfunctional family, and as a result, she has obsessional behavior, too (hoards clothing, easily is stressed, etc.).

     

    Being a single mom years ago, she got what she could, for an apartment, and their place was not the best. All the birds were finally given away (recently), and the son moved out into another apartment that the mom owns, that is hopefully in better shape.

     

    Sincerely,

     

    Carol

  8. I need your recommendations for a PANDAS/PITANDS/PANS & LYME literate doc for a young man (late 20's) who lives in Brooklyn, NY. He has eye tics ("twitches"), is somewhat obsessional/compulsive, and until recently, owned more than 30 pet parakeets all at one time, for many years, which birds may have transmitted 1 or more "bugs" to him (bacterial, etc.). The apartment he was in, (he's out of that one now) also had rats and various insects, including bedbugs, centipedes, and various little bugs he saw in the parakeets' food areas.

     

    He is poor, has no car, is too sick to work, and gets food brought to him by his mom. He is able to travel by subway to Manhattan. He does have some kind of health insurance, and being poor, he needs to see a doctor who takes insurance.

     

    The doctors he has seen so far, have not been able to fully diagnose him. I suspect Mycoplasma avium (from the birds), (he's being tested for this, via sputum samples being cultured) and maybe Lyme Disease (which can be transmitted by tiny ticks even from birds!). He has red marks (possible tiny bite marks) on both the front and back of him. He feels a crawling sensation at times on his skin. He worries about possible parasites.

     

    A while back, he felt better just when on a "prev pack" (minus the acid blocker). But, he felt sicker after he was done with those antibiotics, so I suspect he still has some kind of infection or more than one infection.

     

    Can anyone recommend a PANDAS & LYME literate doctor in BROOKLYN &/OR IN MANHATTAN, who can help to diagnose and treat this nice young man? His platelet count is somewhat below normal, and he lost some hair, has lost weight, and is motivated to get diagnosed and get better. He has been tested for AIDS (which can infect heterosexual patients too, which he is), and he's thankfully negative for AIDS.

     

    Thanks in advance for any doctor recommendations.

     

    Carol

    970-531-5000

    fsds@rkymtnhi.com

  9. It's great that you're giving him a probiotic (?bacterial one, such as Acidophilus, bifidus, etc.?)

     

    There's another kind of very helpful probiotic (beneficial, friendly organism) that is a friendly YEAST(NOT related to Candida albicans). This "probiotic" (friendly) yeast is called Saccharomyces boulardii, pronounced "sack-uh-row-my-seas-boo-lard-ee". It is abbreviated as S. boulardii.

     

    The less expensive (still effective) version of S. boulardii, is sold by Jarrow (health food store brand). I use it myself, daily, to prevent Clostridium difficile infection that is all too commonly caused by antibiotics. Clostridium difficile is abbreviated C. diff, and is a dreadful intestinal infection, often brought on by taking antibiotics.

     

    A more expensive version of S. boulardii, (very effective) is a freeze dried version (do NOT refrigerate this one--keep at room temperature), and this one is sold (over the counter) by pharmacies, and this version is called "Florastor" (made by a French pharmaceutical company called Biocodex). Florastor is a "pun" on restoring one's "flora" in the large intestine.

     

    This friendly yeast puts out a protein that inactivates the toxin made by C. diff, which toxin tries to dissolve the large intestine (gut/colon) walls, to provide a food source for these bad bacteria, the C. diff.

     

    And, the S. boulardii also promotes the re-growth of "bacterioides", which are beneficial bacteria of many species, normally found in stools, before antibiotics destroy most of these "bacterioides".

     

    I was told some years ago, by a wonderful phD researcher, Lynn McFarland, who works or worked for the manufacturer of Florastor (BioCodex), to take 2 capsules in the morning, and 2 capusles in the evening, each time with a glassful of non-chlorinated water (not too cold).

     

    Each capsule (check the label) contains 5 billion "cells" of the friendly yeast, S. boulardii. Florastor calls each capsule 250 mg. (and Lynn said each Florastor capsule does contain 5 billion cells), whereas the Jarrow brand says 5 billion cells are in each capsule. Both brands have equal amounts (cell count) of the S. boulardii in each capsule.

     

    I weigh about 150 pounds, so check with your son's doctors, to see how much less he should take, depending on his age and weight,-- that is, if you and his doctor are OK with his taking this probiotic yeast (S. boulardii).

     

    S. boulardii CAN be taken at the same time as antibiotics, but the probiotic bacteria such as acidophilus, bifidus, etc., should NOT be taken at the same time as antibiotics.

     

    With the bacterial probiotics (Acidophilus, etc.), take that at least a couple of hours apart from taking antibiotics.

     

    If your son happens to have a lactose (milk sugar) intolerance, and if your probiotic has milk in its formulation, you could have your son take a "Lactaid" (brand name of lactase enzyme) along with the probiotic, to "digest" (break down into smaller molecules) the lactose (milk sugar)that is in the milk. This prevents stomach (intestinal actually) upset from lactose intolerance.

     

    If your son is either allergic to yeast proteins, or if he is "sensitive" to yeast proteins, then don't give him the S. boulardii, unelss his doctor OK's this first.

     

    Taking nutritional yeast, or in this case, a "probiotic" yeast, can sometimes cause foot cramping, by somehow interfering with calcium being absorbed, I think.

     

    If this (foot cramping) happens, due to taking S. boulardii, you can increase food sources of calcium (like sesame seed "tahini", cooked salmon or sardines with the BONES in them--canned salmon or canned sardines, that is), and almonds also have both calcium and magnesium.

     

    To see if your son is getting C. diff (hopefully not), have him give in a stool sample to his doctor's office, and have them get the stool sample tested to see if there's C. diff in it.

     

    I hope this helps.

     

    Carol

    cell: 970-531-5000

    fsds@rkymtnhi.com

     

    I remembered how taking (eating) a yeast product can cause foot &/or leg cramps! Yeasts are rich in phosphorus, and (like meat, also rich in phosphorus), eating a lot of phosphorus can tend to drive out some calcium, resulting in a calcium deficiency, leading to foot or leg cramps!

     

    I eat some tahini (sesame seeds crushed into a paste that looks like peanut butter), like a tablespoonful, every day, and no more foot/leg cramps, that I did get, when I first started taking Saccharomyces boulardii!

     

    The tahini (organic is best) can be mixed into soups, made into a smoothie (milk-free if a person is milk protein-sensitive), or put into a sandwich on gluten-free bread (if a person is sensitive to gluten, a protein that is in wheat, rye, barley, etc.).

     

    Sincerely,

    Carol

    (cell) 970-531-5000

    fsds@rkymtnhi.com

  10. It's great that you're giving him a probiotic (?bacterial one, such as Acidophilus, bifidus, etc.?)

     

    There's another kind of very helpful probiotic (beneficial, friendly organism) that is a friendly YEAST(NOT related to Candida albicans). This "probiotic" (friendly) yeast is called Saccharomyces boulardii, pronounced "sack-uh-row-my-seas-boo-lard-ee". It is abbreviated as S. boulardii.

     

    The less expensive (still effective) version of S. boulardii, is sold by Jarrow (health food store brand). I use it myself, daily, to prevent Clostridium difficile infection that is all too commonly caused by antibiotics. Clostridium difficile is abbreviated C. diff, and is a dreadful intestinal infection, often brought on by taking antibiotics.

     

    A more expensive version of S. boulardii, (very effective) is a freeze dried version (do NOT refrigerate this one--keep at room temperature), and this one is sold (over the counter) by pharmacies, and this version is called "Florastor" (made by a French pharmaceutical company called Biocodex). Florastor is a "pun" on restoring one's "flora" in the large intestine.

     

    This friendly yeast puts out a protein that inactivates the toxin made by C. diff, which toxin tries to dissolve the large intestine (gut/colon) walls, to provide a food source for these bad bacteria, the C. diff.

     

    And, the S. boulardii also promotes the re-growth of "bacterioides", which are beneficial bacteria of many species, normally found in stools, before antibiotics destroy most of these "bacterioides".

     

    I was told some years ago, by a wonderful phD researcher, Lynn McFarland, who works or worked for the manufacturer of Florastor (BioCodex), to take 2 capsules in the morning, and 2 capusles in the evening, each time with a glassful of non-chlorinated water (not too cold).

     

    Each capsule (check the label) contains 5 billion "cells" of the friendly yeast, S. boulardii. Florastor calls each capsule 250 mg. (and Lynn said each Florastor capsule does contain 5 billion cells), whereas the Jarrow brand says 5 billion cells are in each capsule. Both brands have equal amounts (cell count) of the S. boulardii in each capsule.

     

    I weigh about 150 pounds, so check with your son's doctors, to see how much less he should take, depending on his age and weight,-- that is, if you and his doctor are OK with his taking this probiotic yeast (S. boulardii).

     

    S. boulardii CAN be taken at the same time as antibiotics, but the probiotic bacteria such as acidophilus, bifidus, etc., should NOT be taken at the same time as antibiotics.

     

    With the bacterial probiotics (Acidophilus, etc.), take that at least a couple of hours apart from taking antibiotics.

     

    If your son happens to have a lactose (milk sugar) intolerance, and if your probiotic has milk in its formulation, you could have your son take a "Lactaid" (brand name of lactase enzyme) along with the probiotic, to "digest" (break down into smaller molecules) the lactose (milk sugar)that is in the milk. This prevents stomach (intestinal actually) upset from lactose intolerance.

     

    If your son is either allergic to yeast proteins, or if he is "sensitive" to yeast proteins, then don't give him the S. boulardii, unelss his doctor OK's this first.

     

    Taking nutritional yeast, or in this case, a "probiotic" yeast, can sometimes cause foot cramping, by somehow interfering with calcium being absorbed, I think.

     

    If this (foot cramping) happens, due to taking S. boulardii, you can increase food sources of calcium (like sesame seed "tahini", cooked salmon or sardines with the BONES in them--canned salmon or canned sardines, that is), and almonds also have both calcium and magnesium.

     

    To see if your son is getting C. diff (hopefully not), have him give in a stool sample to his doctor's office, and have them get the stool sample tested to see if there's C. diff in it.

     

    I hope this helps.

     

    Carol

    cell: 970-531-5000

    fsds@rkymtnhi.com

  11. Dr. Trifiletti's press release of Wed., Feb. 23, 2012, shows how the Le Roy girls have INFECTIONS (Streptococcus Pyogenes, Mycoplasma Pneumonia, and Lyme Disease), that led to their "tic disorders".

     

    Dr. Trifiletti's press release also had contact information for Dr. T., and also websites (links) for more info about PANDAS:

     

    "To reach Dr. Trifiletti contact:

     

    Telephone: 201-962-7284

    Email: trifmd@gmail.com

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

     

     

    For additional Information about PANDAS [Pediatric Auto-immune Neuro-psychiatric Disorder Associated with Streptococcal bacteria]:

     

    http://www.pandasfoundation.org

     

    http://www.savingsammy.net

     

    http://www.nimh.nih.gov/health/publications/pandas/pandas-frequently-asked-questionsabout-pediatric-autoimmune-neuropsychiatric-disorders-associated-with-streptococcalinfections.shtml

     

    http://ocfoundation.org/PANDAS

     

    http://www.askdrsears.com/topics/childhood-illnesses/ocd

     

    http://www.pandasnetwork.org

     

    #########

    "

     

    ----------------------------

     

    I hope others in Le Roy and in Corinth, NY, will contact Dr. T.

     

    Sincerely,

    Carol (Concerned lady)

  12. Go to the PANDAS Network.org website to read a pdf of it. It is not on pub med yet, but Dr. Swedo sent Diana Pohlman a copy with permission to post it.

     

    http://pandasnetwork.org/2012/02/the-white-paper-is-released/

     

    Hi All, for completeness, here is what Beth Maloney thought about the white paper (she sent an e-mail blast):

     

    "Susan Swedo, MD, James Lechtman, MD, and Noel Rose, MD finally came out with a paper proposing that PANDAS fall under the umbrella of something called PANS. The paper's attached [in an email from Beth]. It's an open-access article so distribute to whomever you like. Please read it for yourself and come to your own conclusions.

     

     

    My analysis is that while PANS was touted (and even claims) to expand the criteria, include more children, recognize more infections, etc. etc., even a cursory review discloses that the opposite is true. Many sick children are excluded under this proposal, including those who fit the diagnosis of PANDAS. It narrows the criteria and doesn't expand anything other than the age range. And mysteriously missing is virtually any discussion of autoimmunity and antibodies.

     

     

    My hope was that this paper would support the conveyance of one clear message: when a child presents with rapid-onset, out-of-character behaviors the treating physician should first consider an infection. Apparently that was too much to hope for.

     

     

    In a nutshell, the proposal is that there needs to be all three of the following for PANS: (1) OCD or an eating disorder, (2) two of seven other behaviors, and (3) no other diagnosis to explain the behaviors. In that regard, rather concerning is the suggestion that children be subjected to lumbar punches (spinal taps) in furtherance of criteria #3.

     

     

    The examples are endless, but in short:

    If your child does not have OCD or an eating disorder - he's excluded

    If your child presents with only tics - he's excluded

    If your child wakes up tomorrow and won't go to school, screams for you while you're in the bathroom, and must sleep in your bed - she's excluded

    If your child suddenly develops ADHD-like behaviors - she's excluded

    If your child suddenly has explosive behaviors - he's excluded

    If you child suddenly starts wetting herself day and night - she's excluded.

     

     

    None of the foregoing will qualify the child for PANS. Moreover, the researchers further describe a "hierarchy" where PANDAS falls under the general diagnosis of PANS. This makes no logical sense because "PANS" excludes so many PANDAS children.

     

     

    Why did they do this? It's an attempt to carve up the medical turf. This is politics driving medicine, and the casualties are your sick children.

     

     

    Personally, I'll not be supporting PANS or any proposed diagnosis that excludes so many desperately ill children from the treatment loop. I plan to do exactly what I did when the NIMH told me Sammy didn't have PANDAS: ignore them and keep going. And I expect that the doctors who TREAT children - not just study them - will do the same.

     

     

    I encourage you to write Dr. Swedo and share your thoughts. Her email is listed on the paper as swedos@mail.nih.gov. "

     

     

     

    Thank you for posting Beth Maloney's comments! Beth's book is "Saving Sammy -A Mother's Fight to Cure Her Son's OCD" [OCD=Obsessive Compulsive Disorder], and Beth's website is http://www.savingsammy.net/

     

    Sincerely,

    Carol

    http://cantbreathesuspectvcd.com

  13. This thread has some info. on older kid/teens that may pertain to adults:

    http://www.latitudes...showtopic=16485

     

    and

     

    Here's a Turkish study with adult men:

    http://www.turkpsiki...=article&id=592

     

    Thank you :)

     

    I had my tonsils removed when I was 4 (that was back in the "ether" anesthesia days of 1940's...), so I had no say about it. Later, as an adult, I've read that removing tonsils causes problems with decreasing a person's immune response to infections.

     

    If that's true, what are the pros & cons of getting tonsils out, regarding PANDAS patients?

     

    Is removing a reservoir of strep bacteria the more important factor?

     

    Thanks in advance, for explaining.

     

    Carol

    fsds@rkymtnhi.com

     

     

    It seems that in many situations removing the "nidus" of infections (if strep is lurking in the tonsils) is helpful. It definitely helps some kids, and perhaps helps some kids get less strep. But, there are also kids that have T/A that continue to get strep and have PANDAS problems.

     

    Dr. Tanya Murphy (at the IOCDF conf in San Diego) is somewhat cautious about T/A. She also (like you) points out that tonsils have an immune function, and that she has seen kids whose PANDAS becomes full-blown with a T/A. I don't know if those kids were on abs before/during/after their sx however.

     

    I have heard that Dr. Latimer (usually?) recommends T/A for PANDAS kids.

     

    It's something we haven't done. But our PANDAS dd has always had small tonsils and doesn't get pharyngitis with strep. I don't think anyone in our area would agree to do it frankly. But, it's hard to know. Bc I have heard of kids who have had T/A with small tonsils, but when they're out, the docs say the tonsils are shrivelled and infected.

     

    -------------------

     

    Thanks for this, EAMom!

     

    Above, I also saw this reply:

     

    For those wanting the tonsils out to clear out of infection, but also still wanting tonsils to do their job later on, remember, there is kryo therapy available, so far as I know just available in Germany, where tonsils are frozen off but then regrow.

     

    ---------------------------

     

    Wow! Maybe this could be a win-win choice? Does anyone do this in the U.S.?

     

    And, in a "doctors" thread (docs who help PANDAS patients), "Hootie" talked about homeopathic remedies, and I am waiting for his reply as to which ones he used, etc.

     

    Carol

  14. This thread has some info. on older kid/teens that may pertain to adults:

    http://www.latitudes...showtopic=16485

     

    and

     

    Here's a Turkish study with adult men:

    http://www.turkpsiki...=article&id=592

     

    Thank you :)

     

    I had my tonsils removed when I was 4 (that was back in the "ether" anesthesia days of 1940's...), so I had no say about it. Later, as an adult, I've read that removing tonsils causes problems with decreasing a person's immune response to infections.

     

    If that's true, what are the pros & cons of getting tonsils out, regarding PANDAS patients?

     

    Is removing a reservoir of strep bacteria the more important factor?

     

    Thanks in advance, for explaining.

     

    Carol

    fsds@rkymtnhi.com

     

  15. Kim,

    We were with a regular Ped for several years, then she suddenly became sick. We switched practices to her husband; I needed to explain the whole history. When I was done, all I can say is he looked impotent without the ability to administer vaccines and only wanted to know when he could "catch up" my soon to be 12 y o with the meningitis vaccine. That was in August, so I recently switched to a family doc who has a 12 y o of his own with full blown autism. His two younger children are unvaccinated and he refuses vaccinations for himself as well (to the point where it almost lost him privileges at a local hospital, but other docs rallied behind his choice.)

    So, this doc, I suppose did not see the reason to discuss the ins and outs of one vaccine from another, he doesn't like any of them at this point. I'm not sure I'm crazy about that point of view either. Dr. B at the initial consultation fall of 2010 indicated "no more vaccines for either girl until I clear them". I am not sure if he still holds that position or if it has evolved since then, but I will ask. He certainly does not appear completely "anti-vaccine" to me as there are signs all over his office for Flu shots, but those signs are not for his PANS patients, those are for his allergy patients.

    Oivay mentions a pandas episode for a 12 yo following the meningitis vaccine with two kids getting strep; some very unfortunate luck there. I was most curious about the meningitis vaccine because it is a conjugate vaccine, like the Hib and pneumococcals. I want to find out if Dr. B thinks the conjugate vaccines could be more problematic. If Hib and pneumococcals are problematic under age two, what will the results be on adding meningitis for 12 yos? If damage in immune system development is occurring prior to age two, but some children don't have symptomatic sudden initial onset until 5, 6, 8 years later.....what does adding another congujate vaccine do to that mix? Could it result in an increase in adolescent-onset PANS?

     

    Does anyone know what the occurrance rate of PANDAS is, in unvaccinated children in the U.S. (& in other countries like England, Canada, Australia, etc.), such as in Amish or other communities, compared with the rates of PANDAS in vaccinated children?

     

    Here in Colorado, I've read that it's getting more common for parents to opt out of getting their children vaccinated (for 1, more, or all childhood vaccinations). There are 3 choices that parents in Colorado have, for saying no, and for still being able to have their children attend public schools;

     

    1) medical

    2) religious

    3) personal choice

     

    Sincerely,

    Carol

    http://cantbreathesuspectvcd.com

  16. Here's my 2 cents about the PANS docs...

     

    Dr T is a clinician. And he's been an academic and yes he researches-- but he does so through the lens of clinical practice: What is he seeing most consistently in the kids he treats? What's working for them? What's not? How come? What's the underlying biological mechanism responsible for what he's finding as a treating doctor and how can that knowledge be used to treat them better or more effectively? His passion and interest lies in working directly with patients and using his training, expertise, and skills to diagnose and treat those patients-- including breaking ground and thinking outside of the box if the end result will benefit his patients, as well as other doctors and their patients. You could think of it as: his profession is medical doctor, his occupation (how he pays the bills) is MD clinical practice-- treating patients. For him, career success would most likely be measured by his skill in treating patients, the outcomes for those he treats, and probably how his discoveries and methods

     

    Swedo is a medical doctor by profession and her occupation is medical researcher (government employed). She's a medical scientist who researches the causes and treatments of neuropsychiatric illnesses in a research lab context-- she explores theories, tests hypotheses, synthesizes information, conducts clinical trials, publishes medical-scientific papers, etc. She also has to secure funding, navigate the bureaucratic structure in order to support and advance the work, etc. There will be politics in anything that involves people or groups of people and their beliefs, ideals, or money. There are more politics in play in things that involve governments, money, and politicians. Swedo's role in PANS, beyond her initial discovery, is to continue her research and work on the administrative and political fronts to secure its place in medicine, continue to investigate etiology, and provide evidence for its existing treatments and further research other possibilities. She may be a scientist first, but she also has to act like a politician would to advance a cause. She may care about the kids with PANS as much as the docs who treat PANS in clinical practice, but remember, too, that for her career success is measured by the reach and impact of her research and publications. Taking a step away from our vantage as PANS parents-- we can also see that Swedo's professional reputation and her value/mark as a medical researcher depend on defining PANS and its treatments and securing its place in medicine. This doesn't automatically conflict with the best interests of the children who have PANS, but sometimes it might.

     

    I think Swedo/NIMH could do more more to make things better for patients now, but they seem only to be working behind the current to provide evidence for what they already know/believe so the medical community will know/believe it, too. And PANS is Swedo's discovery, so her reputation and professional worth are tied to its recognition and acceptance. I personally have a problem with her (perceived) ownership of it. She's not the final word. She found it, but others are in the trenches and actively addressing it now. NIMH and the public, media and other health professionals need to look beyond Swedo and her work.

     

    Anyway, I'm sorry if this is type ridden or only partially coherent--I'm sick with a sinus infection and virus on top. Between that and the meds, I'm done and I'm taking my own cue and going to bed now -_-

     

    Great points!

     

    To help your sinus infection, are you doing any nasal irrigations? Please see my "sinus tips" (many of these sinus tips are from Dr. Robert Ivker's book "Sinus Survival"), on webpage 10 of my website. See Appendix A (sinus tips) at this link:

    http://cantbreathesuspectvcd.com/page10.html

     

    Sincerely, Carol

  17. Ugh. It was so gross! I had to run to the pharmacy right afterward so didn't get a chance to post an update. The video of it posted here

     

    I tried getting our questions in but there was a lag and either some submissions weren't being registered or they may have been screening them because a lot of what I submitted didn't appear in the chat window and were not presented to them. I did get at least one of EA Mom's questions about SC through-- but I was annoyed b/c she didn't read them the whole thing and left some of the more important things they should have had to address out.

     

    Interestingly, Dr CD said that Swedo said he can share that she consulted with him on the case and does not believe it is PANDAS but b/c of her job at NIMH she cannot comment on their dx. Hmmm...

     

    He also said that PANS has a very active internet community.

     

    They came across as condescending and misinformed. They were basically just posturing. I still think Mechtler comes off as a sociopath/personality disordered.

     

    TH

     

    ____________________________

     

    I watched the whole hour long interview, and I agree with all that "thenmama" wrote above. I urge everyone to watch it, because there were subtle and not so subtle things going on, in their answers, and in their non-verbal behaviors, in response to questions posed by the interviewer. They did behave as if under siege, and if they weren't so blind and arrogant in their beliefs, I might have felt more sorry for them.

     

    They were at a loss for a reply, when a question was raised about how ulcers used to be thought of as being caused by psychological stress, but that later on, a bacteria that causes ulcers was found (H. pylori), so, the questioner went on--why couldn't a similar thing be true for the girls--that it's not a psychological ailment, but a physical infection, etc.

     

    Dr. Metchler said (as "thenmama" stated) that on Wednesday, he and Dr. Sue Swedo spoke by phone FOR AN HOUR, and that Dr. Swedo thinks it is unlikely that the Le Roy girls have PANDAS, but that she can't say this openly because she works for NIMH.

     

    Dr. M. recommended that the Le Roy girls go to see Dr. Swedo (because, if this is the case), she agreed with Dr. M.

     

    Dr. M. said that those girls who won't go to see him and Dr. McVige at DENT, have families that think that there's a "conspiracy" going on, with Dr. M. and Dr. McVige.

     

    Dr. M. recommended a neurologist in Rochester named Dr. Mink, but someone said(can't remember who said this) Dr. Mink doesn't believe in PANDAS!

     

    Dr. M. said that he and Dr. McVige know a lot about PANDAS, because they talked to PANDAS specialists (!!).

     

    Dr. M. said that the internet is VERY DANGEROUS, and that there's a group (wonder who he meant...) on the internet who are passionate about PANDAS.

     

    Dr. M. criticized Dr. Trifiletti for calling Dr. M's diagnosis of Conversion Disorder a "garbage diagnosis", supposedly before Dr. T. saw the students, and Dr. M. didn't seem to like Dr. Drew too much either (not sure why--maybe for having environmentalist lawyer Erin Brockovich on his show?).

     

    Dr. McVige said that the railroad spill from 1970 was so "far away" (only 3 miles!) that it couldn't be causing any harm to the school.

     

    Dr. M. said that he and Dr. McVige have seen some young people whose families thought they had CD (Conversion Disorder), but who actually had a real tic disorder, but, that he didn't put these patients into the same category as the Le Roy girls. I wonder why not??? I believe he thinks the Le Roy girls have a false tic disorder.

     

    See the whole video, at http://www.buffalonews.com/video/ (click on the word VIDEO, at top left) and see what you all think. If this doesn't work (they may have changed the top video), look a little further down, to where it shows a video called "Chat with neurologists about Le Roy situation".

     

    Sincerely,

    Carol

    http://cantbreathesuspectvcd.com

  18. The most revolting article I've ever seen...

     

    I just watched the hour long interview of Dr. Metchler (Dr. CD/Conversion Disorder) with Dr. Minion (Dr. McVige), and guess who the interviewer was--the very lady who wrote that article! At least (the interviewer's questions were better than the article) she did ask some pointed questions that viewers sent in.

     

    I'll post more of my impressions, after others have had a chance to share their impressions. I was yelling at my computer screen, at much of what was said by those 2. Scary and Unbelievable. Whew!

     

    Sincerely,

    Carol

    http://cantbreathesuspectvcd.com

  19.  

    I called up and spoke with the lady writer of that article. She was pleasant, and listened to me (to a point), and I think she may be willing to consider the possibility of multiple factors, BUT...

     

    I think she has misinterpreted some of what Dr Sue Swedo wrote, and not being in the medical professions, she hasn't dug deeper. I also think that like many, she is somewhat fixated on the "group" aspects (in her mind, the conversion disorder, I think), rather than digging much more deeply, like Dr. Trifiletti is doing, into as many possible factors, as possible.

     

    In what Dr. Swedo wrote, as replies to The Batavian's questions, Dr. Swedo wrote that she thinks a PANDAS epidemic is theoretically possible. This has been ignored by those who believe that's just not possible.

     

    Dr. Swedo wrote that PANDAS can start AFTER puberty, and this also has been mostly ignored.

     

    It may also be helpful to eventually learn what the similarities & differences are, according to Dr. T., between PANDAS & PANDAS-like conditions.

     

    My website is about a condition that was also originally thought to be hysteria among females. It's not. My hubby and I each had it, over 10 years ago. But some docs still think it is hysteria, even as they watch some patients' faces turn blue, from hypoxia, verified by arterial blood gas testing.

     

    Sincerely,

    Carol

    http://cantbreathesuspectvcd.com

  20. Dear nicklemama,

     

    Thanks for trying to help me find Kiera's private message (pm).

     

    I looked to the right of my "name", and it said "0", and when I tried to find any new messages, I couldn't find any.

     

    Hopefully Kiera will send me an email.

     

    I hope many from this forum will ask pointed questions on the live "show", early this evening, with the DENT "docs".

     

    Sincerely,

    Carol

    http://cantbreathesuspectvcd.com

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