EAMom Posted September 30, 2010 Report Share Posted September 30, 2010 That bit about the yeast is very interesting. I wonder why that is. I spent well over a decade - probably close to 2 decades - on antibiotics and have only had 2 yeast infections that I can recall...and I wasn't even taking probiotics or anything during most of that. just to play devil's advocate... are you sure??? have you done the spit test in the mornings..... maybe yeast problem doesn't have to be a full infection..more of the flora being off... myself and other child fine on spit test ...always... dh and ds..spit test always off...dh is much worse than ds..but still a little What is the spit test? Link to comment Share on other sites More sharing options...
EAMom Posted September 30, 2010 Report Share Posted September 30, 2010 Dr. Latimer explained that PANDAS does not go away after episodic treatment with antibiotics. That was a huge deal for her mom to hear. I knew this all along, but mom was indoctrinated by all the doctors she met over the last four years. She never dug into this as deeply as me. She spent her time trying to "normalize" Blake through bullying. Blake's not allowed to cry in her mom's house or she gets grounded. Well, she's deathly afraid of things and she cries at the drop of a hat. How's bullying in this instance not child abuse? I was accused for years of being a bad parent for treating her like a PANDAS child with compassion. I would hold her until she stopped crying like a small child. Her own mom thought that was coddling. (Including my now wife Sarah who is military.) Can you expand on that... is she saying its a life long maintenance thing.. or is she saying that a pan/pit kid will eventually need a big gun..ivig/pex Good question. Or maybe several years on antibiotics (well past puberty) could possibly work in some kids (kind of like Saving Sammy)? (Or is the thought that Sammy will still have some residual mild issues (OCD, adhd) b/c they didn't do pex or IVIG?) Link to comment Share on other sites More sharing options...
Fixit Posted September 30, 2010 Report Share Posted September 30, 2010 (edited) Meg's mom just start this thread http://www.latitudes.org/forums/index.php?showtopic=10256 get water from tap and let it sit overnight..cannot be fresh water...i put 4 glasse out on kitchen counter..(i have a 3 yr old that will be included in next testing) and we do it as a family thing and talk about how gross it is(all boys ya know) brush your teeth at night..... in morning..do not drink eat or brush...just spit...and in seconds strings or foggyness might appear.. or like myself...it just disapperas(normal)(i keep telling people i'm normal all the time ) Edited September 30, 2010 by Fixit Link to comment Share on other sites More sharing options...
norcalmom Posted September 30, 2010 Report Share Posted September 30, 2010 Are these doctors practicing in secret? I know the doctors I mentioned were at that NIMH meeting. And, the doctors I'm referring to are the ones being asked to participate in writing the white paper and present at the conferences. Most doctors and researchers like to have their name on papers and present at conferences when they invest that much time in becomeing an expert, so I'd think it wold be fairly esy to find them. I can't tell you the number of doctors I've call trying ot FIND a treating doctor in our area. They can't even come up with a name to REFER me to. so, if you are a patient of Dr. L's - PLEASE ask her what doctors she is reffering to. I'd love to have another resource. As far as I have ever seen, she is the only one using PEX, but is she switching more to IVIG in light of what other docs have been finding ? I think we should all come up with a list of question and the next person with an appointment whoudl ask Dr L! (kidding...that would be one long appointment). Link to comment Share on other sites More sharing options...
thereishope Posted September 30, 2010 Report Share Posted September 30, 2010 (edited) I'd be curious too. I know there are some parents on here whose kids got better on antibiotics alone. Or does she simply mean PANDAS is not cured with an episodic course of antibiotics, which I agree. It can go into a remission, but the possiblity of reoccurance is there. I suppose that sentence can read in different ways. Dr. Latimer explained that PANDAS does not go away after episodic treatment with antibiotics. Can you expand on that... is she saying its a life long maintenance thing.. or is she saying that a pan/pit kid will eventually need a big gun..ivig/pex Good question. Or maybe several years on antibiotics (well past puberty) could possibly work in some kids (kind of like Saving Sammy)? (Or is the thought that Sammy will still have some residual mild issues (OCD, adhd) b/c they didn't do pex or IVIG?) Edited September 30, 2010 by Vickie Link to comment Share on other sites More sharing options...
EAMom Posted September 30, 2010 Report Share Posted September 30, 2010 For some reason...this is making me think of the "drano test"! Link to comment Share on other sites More sharing options...
EAMom Posted September 30, 2010 Report Share Posted September 30, 2010 Are these doctors practicing in secret? LOL. Link to comment Share on other sites More sharing options...
NancyD Posted September 30, 2010 Report Share Posted September 30, 2010 Dr. L told us that DD will be on 1000mg bid Augmentin XR until she is in her twenties. Link to comment Share on other sites More sharing options...
Fixit Posted September 30, 2010 Report Share Posted September 30, 2010 (edited) For some reason...this is making me think of the "drano test"! just looked up drano test...no one is pregnant!!!! this is a test we have done many times...with the same results each time...me and boy2 normal..dh and ds1 stringy foggy(panda people) if it is candida..i know it is hard to clear...may take years, like many conditions we talk about here.... and i admit this has not been at the top of my list to work on..but maybe should be.... Edited September 30, 2010 by Fixit Link to comment Share on other sites More sharing options...
Tenacity Posted September 30, 2010 Report Share Posted September 30, 2010 I have heard Hershey Medical Center has, and several other major institutions on the east hhave. We are kidding ourselves if we don't believe the severe cases are not receiving help. Yours is not the first such hint I've come across. I suspect you're right -- and I hope you are! But God help the kid with a "severe case" ever make it to one of the quiet clinicians (or groups of clinicians) who will actually take the bull by the horns, LISTEN, STUDY, LEARN, ANALYZE, (perhaps even COLLABORATE?!), DIAGNOSE, and TREAT! My child was misdiagnosed and mistreated for years. Eventually, I figured out on my own that he must be suffering from post-infectious neuropsychiatric autoimmune disease. But by this time, we had an entire hospital Child Neurology Department and an entire medical branch of a day treatment center -- not to mention a local Committee on Special Education and a bunch of other miscellaneous medical specialists incapable of thinking or acting "outside the box" -- dead set against me and my kid. By that I mean, not just missing what was happening, but absurdly insisting that something else was happening when it quite plainly was not, and finding a sickening, selfish safety in just "going with the flow." I can imagine their perspective: Hey, if a few dozen other specialists have asserted that this patient and his mother are nuts, why should I be the one to stick my neck out, investigate the case for myself, and risk my own beheading?... I am so deeply grateful for the few good doctors I have encountered. I am hoping some day, I may credit them with having saved my son's life. But the harsh reality is, most of the doctors I have dealt with in the last four years were neither humanitarians nor scientists, but self-serving politicians. It was ANTI-MEDICINE. Tenacity Link to comment Share on other sites More sharing options...
norcalmom Posted September 30, 2010 Report Share Posted September 30, 2010 ANOTHER LAUGH - I know of at least one head of immunology (shall remain nameless) that IS practicing in secret because he doesn't want to be known as the "pandas" doctor. Head of immunology at one of the world's leading research centers...but then again, he was just borrowing Dr. K's protocol. Link to comment Share on other sites More sharing options...
nevergiveup Posted September 30, 2010 Report Share Posted September 30, 2010 I believe Dr K and Dr L were the only two of our "forum docs" at the mtg. And no they don't practice in secret. That's ridiculous, docs do treat serious cases, especially mico plasma pneum titers and SC. Every hospital neuro does, they have treated with ivig. They just call it a different name. So in secret, well you decide, pandas is not a disease, insurance doesn't cover it. How can they treat a disease that doesn't exist or is taboo. Sooo they call it autoimmune or SC or high mico titers, or lupus like. They help kids with serious cases. Many neuro's have in all of our major children hospitals. Link to comment Share on other sites More sharing options...
Kayanne Posted September 30, 2010 Report Share Posted September 30, 2010 I have heard Hershey Medical Center has, and several other major institutions on the east hhave. We are kidding ourselves if we don't believe the severe cases are not receiving help. Hershey was a dead end for us...our ped called 2 pediatric neurologist's and was told they don't believe in PANDAS...but there is a pediatric rheumatologist who is "open to it". Well that rheumy turned out to be kind of rude and even called himself a "disciple" of Singer. I'm pretty sure Hershey was a dead end for another family too. I would love to know if you have any new info about Hershey. Link to comment Share on other sites More sharing options...
nevergiveup Posted September 30, 2010 Report Share Posted September 30, 2010 They have done pex, but no one wants to be a pandas doctor. And my guess is even with the white paper, procedures like ivig and pex will only be offered to the most severe cases. I am not saying you can find a pandas doc at these hospitals by calling them. But teams of physicians in children hospitals all around the country have and still do allow for pex and ivig in severe cases. I know of many, yet if you bring your kid in to neurology they always say no they don't treat pandas, but yes they treat unspecified autoimmune disorders associated with chorea and neuropsych sytmptoms, and yes they offer three rounds of ivig for severe sydenhams and mico plasma pneumonia. Even in our local childrens hospital they treated several child in rheumototlogy with severe oCd with ivig and it helped. But if you call those same docs they do not treat pandas, becuz it doesn't exist. This is why they are changing the name, becuz it is taboo. Link to comment Share on other sites More sharing options...
norcalmom Posted September 30, 2010 Report Share Posted September 30, 2010 That was a joke nevergiveup. SC, and lumpus and many other disorders are not pandas...my child doesn't have those diseases. And, just because a doctor treated a patient or two, does not mean that they are expert in diagnosing and treating pandas(cllit whatever you want). I firmly beleive that far more "serious cases" are being sent to psychiatric wards or being put on heavy meds than being treated for infection triggered immune disorder that cause neuor-psychiatric symptoms. Dr Latimer said there are 4...that are experts...that's what we are talking about. There are defiantley more than 4 treating it (heck, I've got a local treating doc that asks ME for information!), we are talking the foremost treating experts - specializing in it. That have seen at least 30 cases. And those that "beleive" in it. Sounds like you don't. You think all pandas cases can be classified as some other disorder? I think it is a diagnosis of exclusion. We ruled everything else out to get to it! So, back to the point. Dr L considers herself a specialist. Who does she consider to be the other 3? Link to comment Share on other sites More sharing options...
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