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Details: Two Hour Appointment Today with Dr. Latimer


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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.

 

 

My understanding is that Dr. B was there, but had to sit in the corner & be quiet!!

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This is all fascinating -- and horrifying.

 

My son is a "severe case." Finally, after four years, he is about to receive plasmapheresis.

 

Sure, I believe some "severe cases" are recognized and treated -- whatever label they might be given. But I still maintain, that when a kid gets no label, or worse, a medically or politically "incorrect" label -- whether this be "PANDAS," "bipolar disorder," "obsessive-compulsive disorder," "anxiety disorder," or whatever (?!)-- well, that kid is in BIG trouble....

 

I bet, for every "severe case" that gets help "in secret," there's a whole lot more cases just fall into the gaping abyss between psychiatry and neurology (and the rest of medicine).

 

Thank Goodness for the Information Age! How, on Earth, would I shop, or learn about PANDAS, or have anyone to talk to, without it?! But it's still THE DARK AGES for folks with mysterious illnesses that affect the brain!

 

Tenacity

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Which post said that she said 4 experts treating, she said four docs who "get it" and understand pandas. She was not referring to the docs we think. We are so short sited on this forum. And yes pandas is a spectrum disease in the SC spectrum.

NormCal anyone ever tell you low igg3 is a marker for b cell problems, have you ever had a b cell panel done on your child. (Hence immune def or autoimmune issues)

 

And no I am not joking, Dr L is not advertising for our docs, she really doesn't consult with them. Dr K was at the mtg. There are some smart docs out there who get this disease but there hands are tied, due to insurance and professional isolation.

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Tenacity, What is always the common theme on mystery diagnosis, the patient fighting like ###### to figure out what is wrong. My neuro told me he has thousands of children he has seen with unknown disease and issues, thousands!!!!! We are kidding ourselves if we do not believe that our "tenacity" does not get our children better medical care. But on this forum we seem to think we live in a vacuum and smart intelligent researchers and doctor out there are too stupid to "get this illness". It has nothing to do with that and a lot to do with liability, professional isolation and cost and payment. BUT they do HELP many kids in crisis, right now, in many places. And our four major docs will not be the leaders in this illness, and are not even now the leaders, once the green light is given to CHOP, HOPKINS, etc....we will finally see what all these docs have up there sleeve. Even b cell drugs, my neuro wants better drugs targetting the immune system, not ivig.

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One more observation to throw into this unhappy (but important!) mix:

 

There's a single doctor in my town with the popular reputation of being a "PANDAS expert." (Yes, he's met important people, and he's published.) Our pediatrician, for whom we have great respect, admiration, and gratitude, referred us to this doctor, in our desperate search for information and help.

 

What a DUD! Never looked at the health history. Never looked at the kid. Chock-full of platitudes. He was simply comfy and cozy in the nest he'd made for himself, and didn't want to risk anything by rocking the boat. [White jacket, neck-tie, and eye-glasses were all just right of course.] Like a character out of Dickens.

 

Smart, honest, brave, and honorable people sometimes have to rock the boat! Take PANDAS parents, for example!...

 

Tenacity

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Really, Dr B was auditing the mtg, not a player, a learner. Its good he went, but again, CHOP was a major player, and swedo(couldn't she be one of the docs Latimer says uunderstands this illness, how about Tanya Murphy heard she was there, was major NIH player now sees pandas kids privately. Please we all need to be more opened minded. This forum is having some "group think" stagnation. There is a whole big world out there and we do not have all the answers, at least not yet anyway. I have been around here over 5 years, and yes we are getting somewhere but we still have a long way to go. Actually I believe that was the final agreement from the mtg, we still have so much more to learn and understand about pandas. I believe, the exact words were "after the mtg qe all realized there is more we don't know about pandas than we do".

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Tenacity, What is always the common theme on mystery diagnosis, the patient fighting like ###### to figure out what is wrong. My neuro told me he has thousands of children he has seen with unknown disease and issues, thousands!!!!! We are kidding ourselves if we do not believe that our "tenacity" does not get our children better medical care. But on this forum we seem to think we live in a vacuum and smart intelligent researchers and doctor out there are too stupid to "get this illness". It has nothing to do with that and a lot to do with liability, professional isolation and cost and payment. BUT they do HELP many kids in crisis, right now, in many places. And our four major docs will not be the leaders in this illness, and are not even now the leaders, once the green light is given to CHOP, HOPKINS, etc....we will finally see what all these docs have up there sleeve. Even b cell drugs, my neuro wants better drugs targetting the immune system, not ivig.

 

 

I think our last messages crossed!

 

I love your optimism and your science. I don't dispute any of it. I guess, I was focusing on the problematic social component of all of this business, which can poison other things. Maybe I'm just not as forgiving as you. I've watched my child's brain deteriorate before my eyes, while everyone around me said it was either my imagination or my fault -- or both. Before this illness, he was loving his life, and was the star of his class. Now he's living like a miserable mushroom -- can't read/write/draw, can't speak, afraid of fresh air and sunlight.... I'm thrilled to hear, somebody somewhere gets it, and is doing something about it. But the long series of doctors we've dealt with over four years sure didn't get it. And, in fact, they downright blocked any possible path to help. We were black-balled. Damaged goods. Tried to get to a different hospital, but who would take us, when the point of departure was a worthless pile of prejudicial bologna from another hospital?! If we hadn't been fortunate enough to break out and find a private neurologist who had the brains to recognize what was happening and the guts to officially say so, I might have lost my profoundly neuro-immunologically sick child to Child Protective Services. I am not exaggerating.

 

Re. "Mystery Diagnosis" -- haven't seen this show, although I'd like to! I will say, however, that there are various degrees and levels of mystery. I don't really buy that PANDAS cases are just as mysterious as every other odd illness. Four years ago, my child had three rotten infectious illnesses in a row, then a few weeks later became psychotic, suicidal, anxiety-stricken, suffered urinary accidents, weird collapses, altered sensory perception.... No doctor, including his pediatrician since birth (who used to call him "Dreamboat"), would touch him with a ten-foot pole. We called the pediatrician's office repeatedly, to report what was happening and ask for help. One day, the annoyed receptionist said, "You've dialed the wrong number -- this line is only for sick children."

 

The fact that we don't thoroughly understand the pathogenesis of an illness should not prevent us from doing whatever we can to help the victims of the illness. I think PANDAS kids are being cast aside, because they are so easily classified (by a stupid system!) as "psychiatric" cases. When -- oh, when?! -- will people (including doctors!) learn that the brain is part of the body?!...

 

Tenacity

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"Dr. Latimer told me yesterday that there are only four doctors in the world (including herself) she considers qualified to treat PANDAS properly."

 

that is the quote from the original thread. So, it isn't "we on the forum who are narrow minded" its Dr. Latimer?

 

The forum is meant to share information...so we can get help for our kids. If you have some doctors that you know have helped some kids - add their names to the pinned "Drs who have helped" thread.

 

Fisrt you said that she is takling about people we don't know, and now you say that neurologists everywhere are treating it...

 

I just want to know who she considers the 4 are. I know who the forum would (or maybe 5 or 6)..

 

I do agree that someday there will be lots of key researchers and doctors that make their names known (once they "get the green light") The ones that are doing it while facing a stop light are the ones that matter at the moment 9my personal heros), to me, becuase I need help now.

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Sure, I believe some "severe cases" are recognized and treated -- whatever label they might be given. But I still maintain, that when a kid gets no label, or worse, a medically or politically "incorrect" label -- whether this be "PANDAS," "bipolar disorder," "obsessive-compulsive disorder," "anxiety disorder," or whatever (?!)-- well, that kid is in BIG trouble....

 

I bet, for every "severe case" that gets help "in secret," there's a whole lot more cases just falling into the gaping abyss between psychiatry and neurology (and the rest of medicine).

 

 

I completely agree! (And don't forget "anorexia"", oppositional defiant disorder", and "tourettes"...)

 

Speaking as a parent with a child with a severe and "clear cut" case of PANDAS, I can assure you that my dd would have fallen into that abyss if she had two "normal" (you know, the kind that listens to docs, believes them, and doesn't do their own research for hours on end) parents.

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My dh sees a specialist who is getting close to retirement (in a few years, probably but hopefully longer bc he is involved in alot of research which is desperately needed). Lately he has been having an intern follow him and field patient calls (with the dr being consulted). He is also training him in all of the latest information and research. Wouldn't it be great if each of the "PANDAS dr's" did the same thing. They would start multiplying the amount of dr's who could help our kids.

 

 

Please tell Dr L to train an intern and make him/her move to Northern California!

 

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In agreement with Kayanne. Hershey Medical Center blacklisted us. My son got sick at age 5. Went to see many specialist. Our pediatrician sent my son's file to Hershey to get us an appointment. The the neurology department at Hershey looked at it and REFUSED to see him. When the pediatrician called me and told me this they said this has never happened before. They were stunned that Hershey would not see him. I said that I was totally fine with it. Obviously, God was telling me this was not the doctor I was suppose to see. The next doctor we saw was Dr. Latimer. Thank God. Can you imagine if I wasted my time at Hershey? I am glad that they rejected us. I may not be where I am today. Hershey may very well be worse than CHOP.

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Tenacity, What is always the common theme on mystery diagnosis, the patient fighting like ###### to figure out what is wrong. My neuro told me he has thousands of children he has seen with unknown disease and issues, thousands!!!!! We are kidding ourselves if we do not believe that our "tenacity" does not get our children better medical care. But on this forum we seem to think we live in a vacuum and smart intelligent researchers and doctor out there are too stupid to "get this illness". It has nothing to do with that and a lot to do with liability, professional isolation and cost and payment. BUT they do HELP many kids in crisis, right now, in many places. And our four major docs will not be the leaders in this illness, and are not even now the leaders, once the green light is given to CHOP, HOPKINS, etc....we will finally see what all these docs have up there sleeve. Even b cell drugs, my neuro wants better drugs targetting the immune system, not ivig.

 

 

I think our last messages crossed!

 

I love your optimism and your science. I don't dispute any of it. I guess, I was focusing on the problematic social component of all of this business, which can poison other things. Maybe I'm just not as forgiving as you. I've watched my child's brain deteriorate before my eyes, while everyone around me said it was either my imagination or my fault -- or both. Before this illness, he was loving his life, and was the star of his class. Now he's living like a miserable mushroom -- can't read/write/draw, can't speak, afraid of fresh air and sunlight.... I'm thrilled to hear, somebody somewhere gets it, and is doing something about it. But the long series of doctors we've dealt with over four years sure didn't get it. And, in fact, they downright blocked any possible path to help. We were black-balled. Damaged goods. Tried to get to a different hospital, but who would take us, when the point of departure was a worthless pile of prejudicial bologna from another hospital?! If we hadn't been fortunate enough to break out and find a private neurologist who had the brains to recognize what was happening and the guts to officially say so, I might have lost my profoundly neuro-immunologically sick child to Child Protective Services. I am not exaggerating.

 

Re. "Mystery Diagnosis" -- haven't seen this show, although I'd like to! I will say, however, that there are various degrees and levels of mystery. I don't really buy that PANDAS cases are just as mysterious as every other odd illness. Four years ago, my child had three rotten infectious illnesses in a row, then a few weeks later became psychotic, suicidal, anxiety-stricken, suffered urinary accidents, weird collapses, altered sensory perception.... No doctor, including his pediatrician since birth (who used to call him "Dreamboat"), would touch him with a ten-foot pole. We called the pediatrician's office repeatedly, to report what was happening and ask for help. One day, the annoyed receptionist said, "You've dialed the wrong number -- this line is only for sick children."

 

The fact that we don't thoroughly understand the pathogenesis of an illness should not prevent us from doing whatever we can to help the victims of the illness. I think PANDAS kids are being cast aside, because they are so easily classified (by a stupid system!) as "psychiatric" cases. When -- oh, when?! -- will people (including doctors!) learn that the brain is part of the body?!...

 

Tenacity

 

I am sorry you had to go through this...Truly

i agree the majority kids are easily dismissed/or slip through cracks...or pigeon holed as this/that or the other...because a parent couldn't possibly have any clue as to what may have triggered their kids condition ,,,as they don't know...they don't know because the haven't been listening to the few observat parents who put it togher..

 

before freud seperated the brain from the body, docs would correlate most neuro problems..not just sc and rf.... to post illnesses....

 

we have to change an entire industry, back the other direction...a very few are already there..even if you said there are 24 panda docs(and lets say 10 of them are specialist or at least the best versed)...that is a drop in the bucket if you think of 50 US states, all the doctors, hospitals,phychiatrist, pa's,neuros....and these few still have to buck the system...

 

on a good note it is coming!!!!!!!!!

 

i think you should print the NIH statement and walk into the office with multiple copies and 10 other studies for the special receptionist...i'd like to go with you!!

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