looks like i am leaving the club...

[JMTho]

First: From the medical perspective, it is very difficult and heart-wrenching to be unable to offer an answer and a treatment for suffering patients. These physicians face opposition from their peers and are breaking ground with treatment protocols that are not standard of practice. (read: professional isolation). I'm sure it was very difficult/heartwrenching for Dr. L to recognize this family's investment in time/money and trust, only to feel she couldn't help. But, she was honest and giving you her best medical opinion at the time with the best information available.

 

Second: Odds are, some of us might be on the wrong path... OR, some of these kiddos might have another, underlying condition which complicates diagnosis and/or confuses the picture of what is going on. It would be remiss for a physician to ignore her best medical opinion. As a parent, you must also follow your heart: get a second opinion: try to organize your chart/information/symptom summary/timeline/treatments on paper or in a document file; send on to MD prior to meeting so that they can objectively review data in advance.

 

Third: We are desperate to help our kids. We have made ourselves knowledgeable about this area of research. However, we are only looking at symptoms through the PANDAS lens. The docs who BELIEVE in the PANDAS/PITANDS diagnosis are looking with this the PANDAS lens, but ALSO have depth of knowledge in other possible diagnoses and may see things we do not. Devastating as it may be to be turned away, I would want to know WHY. What did she see that made her think it was "not" PANDAS? What direction would she suggest you go next (as far as specialists) based on the symptoms she reviewed/observed. My best question in health care situations is: "What would you do next if this were your child?" The answer is often very different than the "standard of practice" answer.

 

Worn out Parents... you are in our thoughts and hearts...

[WornOutDad]

EAMom- why do you say he may not respond as well to future bursts?

 

He was on a 5 day course of steroids for poison ivy a year and a half ago and remember him being unusually calm during this time

 

BTW, Wornoutmom....this is very significant (and he may not respond as well to future steroid bursts).

 

I am very curious as well???

[EAMom]

EAMom- why do you say he may not respond as well to future bursts?

 

He was on a 5 day course of steroids for poison ivy a year and a half ago and remember him being unusually calm during this time

 

BTW, Wornoutmom....this is very significant (and he may not respond as well to future steroid bursts).

 

I am very curious as well???

 

I don't exactly understand the rationale...but this is something that Dr. K. has said and some others on the forum have observed as well.

[Fixit]

wornout...i haven't read every part of this thread...and JMT has some good points

and i agree with Peglem, from another thread, if i can sum this up some of my own thought and people i know

that it is all triggered by something and we need/want to untrigger it

 

i have 1 friend who's brother woke up schitosphrntic a grown man with 2 kids???

and another friend who's 7 year old daugther woke up bipolar..

 

I would tell both to look into pandas or some virus, bacteria, chemical other

and i wish i could find the thread,,,but up on canada i heard they are having a problem or a "cluster" of people with the 2 mentioned conditions

Lack of vitamin D????

Lack of the B's?? there is a dad following that rought. His wife committed suicide and both of his older kids have it and he took them off the meds since he saw zero benefit and is using B vitamins that were being perscribed for pigs(for something simialr, i think) and 1 kids is doing fantastic and other is coming along pretty well........they are both in college or older

 

i hope this helps....i just wish i was as smart as some here to be more technichal and follow everything....but if its not pandas/pitands maybe your child just needs some B's.....and maybe its just that your child needs a higher dose than someone else might need!!!!!

[EAMom]

As for EAMom and Buster...I understand why they choose not to publicly post their doctos's info. Let's face it, parents on here put them on a pedastal. If they posted their docs' info, people would be booking flights instantly to see their doctor and requesting the "Buster/EAMom child protocal".

 

Believe me, most of the docs (with the exception of our psychiatrist who has a 6-month-long waitlist and who can't order IVIG anyway, and you wouldn't just see her 1x anyway) we have seen have not been PANDAS experts and would not be worthwhile booking a flight out to see them. Many are not even interested in seeing PANDAS cases and have not seen more than 1-2 cases before us. Fortunately, we were able to present our "evidence" in a way that they agreed to treat our dd (and usually it's us telling the docs what we want to do, not the other way around). Remember, Mom2alex has seen some of these same docs and is considering flying East (from CA) for treatment. Diana P. and SFmom (also in our area) also have traveled out of state for treatment.

[EAMom]

Now, personally, I don't know I how I feel about giving the name to locals but not everyone. Maybe that should be rethought. All or none. But I understand not posting publicly.

 

I share information about a doc if someone asks me, usually b/c they are actually thinking of seeing that doc. None of the docs that we see are worth "traveling across the country for" which is why it's only been local parents (including many on this forum) who we've shared info. with. If there was a wonderful doc who was PANDAS knowledgeable/worth traveling for/interested in treating PANDAS kids (like Dr. L., Dr. T., Dr. K) for then that would be a different situation and I would re-think our (Buster and my) policy.

[sf_mom]

I will add my comments... That the majority of Dr.'s we have seen in CA do not know how to diagnose or treat PANDAS. They are worried, rightfully so, because of the lack of strong diagnostic criteria, specific treatment protocol and ability to follow the child's psychological issues during recovery. Just last week, I had a 2 1/2 hour conversation with a Dr. and every time I pointed to my older son who is doing well... he would say 'he looks fine to me' but I wouldn't know if he still suffers from psychiatric issues because I'm an immunologist and not a psychiatrist. Bottom line: AND this in only my perspective, they just don't want the liability until there is more 'proof' of successes and direction on how to treat. FOR NOW, we are all suck in this conundrum and our children's successes are paving the way for others. THIS IS THE REALITY OF THE SITUATION.

 

Once our children are well, it is our responsibility to report back to each and every Dr. our child has seen and let them know EXACTLY what worked. AND, to share with others new to the forum with regular updates on our children's progress. Slowly, slowly, slowly the tide will change!!!!!!!

 

I will be FOREVER grateful to the parents that have guided us through this process and Dr.'s that were willing to take the risk.

 

-Wendy

 

 

 

 

 

 

As for EAMom and Buster...I understand why they choose not to publicly post their doctos's info. Let's face it, parents on here put them on a pedastal. If they posted their docs' info, people would be booking flights instantly to see their doctor and requesting the "Buster/EAMom child protocal".

 

Believe me, most of the docs (with the exception of our psychiatrist who has a 6-month-long waitlist and who can't order IVIG anyway) we have seen have not been PANDAS experts and would not be worthwhile booking a flight out to see them. Many are not even interested in seeing PANDAS cases. Fortunately, we were able to present our "evidence" in a way that they agreed to treat our dd. Remember, Mom2alex has seen some of these same docs and is considering flying East (from CA) for treatment. Diana P. and SFmom (also in our area) also have traveled out of state for treatment.

[Fixit]

i'm not sure if some consider this irrelevant or old new but here it is...there's a video some where too....

 

http://www.totalhealthbreakthroughs.com/20...polar-disorder/

 

http://www.moodfoods.com/supplements/vitamin.html

 

http://findarticles.com/p/articles/mi_7396...7/ai_n45060718/

 

I hope and pray we all find our answers!!!!

[reactive]

quote]laurenjohnsonsmom[quote

Maybe she's just overworked and overwhelmed and us losing focus and good judgement. Unfortunatley it's the children who suffer...she (dr. Latimer) is going through some rough personal issues NOT that i'm making excuses.

 

 

...Are you sure you're talking about Dr. L. here? ... ..not sure its cool to state something like that. Isn't your child a patient of hers? I am pretty sure Dr. L. is VERY dedicated to helping these children.......that's something we should all stay focused on.

Just a comment here really, I seem to always have some kind of personal example of our own in these instances...but as a parent it is our job to protect out children. And NO healthcare provider is perfect. They can all have a "bad day". When my ds9 was 4 and we were in crisis, we could not see a psychiatrist for 8 months, but we could see a psychologist in a few weeks. This lady was CRAZY. And I left there so upset, knowing she was wrong. So, I moved on and traveled to see a psychiatrist in Pittsburgh and also had a few email exchanges with the anti-Christ ( Dr. Kurlan...now of course I never got anywhere else with PANDAS as it is rare to find someone to treat it...

 

The point is I found out later through colleagues that the crazy psychologist had a few issues of her own...a major illness. I had gone as far as to complain to the dept of psychiatry in that hospital, and I got a call of apology from that director; she knew something was wrong with this lady but told me to do anything they have to document the complaints. It really ticked me off though that they still let families in crisis see her... and I also found out through these colleagues that before her illness, she was THE BEST TO SEE.

 

Just food for thought... devils advocate really...all of us parents need to keep focused on our paths and children but use our gut instinct if you think the doctor did not understand the story...that is why I am preparing so hard for my visit with Dr. K...I have five years of medical records from OT, speech and hearing, ER, complete pediatrician chart, developmental pediatrics, neurology, psychiatry and urgent care place to secure, organize and send to Dr. K before we even see him...plus write my own account of the last 5-6 years, plus all the school info, state tests, and handwriting and drawing samples. It is truly mind boggling. So I feel for you when you question if you gave the story of your son accurately enough...

[wornoutmom]

quote]laurenjohnsonsmom[quote

Maybe she's just overworked and overwhelmed and us losing focus and good judgement. Unfortunatley it's the children who suffer...she (dr. Latimer) is going through some rough personal issues NOT that i'm making excuses.

 

 

...Are you sure you're talking about Dr. L. here? ... ..not sure its cool to state something like that. Isn't your child a patient of hers? I am pretty sure Dr. L. is VERY dedicated to helping these children.......that's something we should all stay focused on.

Just a comment here really, I seem to always have some kind of personal example of our own in these instances...but as a parent it is our job to protect out children. And NO healthcare provider is perfect. They can all have a "bad day". When my ds9 was 4 and we were in crisis, we could not see a psychiatrist for 8 months, but we could see a psychologist in a few weeks. This lady was CRAZY. And I left there so upset, knowing she was wrong. So, I moved on and traveled to see a psychiatrist in Pittsburgh and also had a few email exchanges with the anti-Christ ( Dr. Kurlan...now of course I never got anywhere else with PANDAS as it is rare to find someone to treat it...

 

The point is I found out later through colleagues that the crazy psychologist had a few issues of her own...a major illness. I had gone as far as to complain to the dept of psychiatry in that hospital, and I got a call of apology from that director; she knew something was wrong with this lady but told me to do anything they have to document the complaints. It really ticked me off though that they still let families in crisis see her... and I also found out through these colleagues that before her illness, she was THE BEST TO SEE.

 

Just food for thought... devils advocate really...all of us parents need to keep focused on our paths and children but use our gut instinct if you think the doctor did not understand the story...that is why I am preparing so hard for my visit with Dr. K...I have five years of medical records from OT, speech and hearing, ER, complete pediatrician chart, developmental pediatrics, neurology, psychiatry and urgent care place to secure, organize and send to Dr. K before we even see him...plus write my own account of the last 5-6 years, plus all the school info, state tests, and handwriting and drawing samples. It is truly mind boggling. So I feel for you when you question if you gave the story of your son accurately enough...

 

 

 

Thanks for your encouragement. I have been trying to take off my "PANDAS glasses" for the last few days and do some reading on rage seizures and bipolar. The bipolar does seem to fit, not so sure about the seizures though I have found much less information about that. Regardless, that is something that is "testable" and I am happy to rule it out. As I said in my original post to the forum, my son's history seems to match Dr. T's PANDAS Type 1 for his onset at age 6-7, but not currently. My son was not without symptoms prior to this sudden onset (that's why we were already involved with a child psychiatrist), just that the OCD and separation anxiety seemed to explode suddenly at that time with alll sorts of new symptoms. Could the 4 days of Paxil we gave him activated this? I don't know. That's what we thought at time, until months later when we learned about the strep/PANDAS connection. When I look back at how I presented my son's symptoms prior to that day to Dr L, I can see where it wouldn't sound like PANDAS. There was an increase in anxiety tantrums/fits, emerging tics, night terrors and sleep walking/urinating, sensory dysfunction, extreme shyness, some ordering and symmetry stuff, need to know/just right OCD stuff from age 3-6 but it was not sudden, not a "day" like the episode at age 6.

 

I totally relate to your psychologist story. We had a 3 month wait to see the psychiatrist when son was 6, so got into see a psychologist who was supposed to be specializing in anxiety disorders right away once we decided we really needed help. My son threw a huge rage in his office over me saying only 1 piece of candy, not 2. We had to carry him out kicking and screaming. I thought maybe the psychologist had set this scenario up in offerring the candy as some sort of diagnostic thing. Turns out he wasn't that smart - he was just trying to be nice. We wasted 9 months with this guy, the whole time my son telling me he wasnt helping at all (and this from a 6 year old), until his diagnosis of OCD, when I confronted the therapist as to his knowledge of pediatric OCD and he admitted we needed to find someone else.

 

I'll be very interested to know if Dr. K actually reads all you are sending him. I sent Dr N a typed history and it was clear in our phone consult she hadn't read it. So it tried to be more prepared for Dr L's visit with something more succinct. Dr. L's office did not want me to send anything ahead of time, and she did not want to look at the compilation timeline I had written out (compiling 10 years...) - said she does better just hearing it. Which is unfortunate because I don't do better telling it, I do better writing it...I have been looking a long time trying to figure out how all the pieces fit together for my son. Many of the pieces do come together in reading newsletters from the bipolarchild.com website. And yet, I know that some of you have said your PANDAS diagnosed kids have similar symptoms that remitted after treatment. Knowing what I know about PANDAS, its so hard to let go of the connection to his explosion in symptoms, all the strep infections and his recovery after the clydamycin/tonsillectomy. The only time I can say things remitted for our son was then. And even then there were some left over OCD things that caused us to put him back on a tiny dose of Celexa. And of course now I wonder if using SSRIs for so many years has brought on/activated bipolar with puberty. Or maybe this is what PANDAS looks like when left untreated for so many years?????

[laurenjohnsonsmom]

wornoutmom

 

I know for sure that Dr. K likes to see it written out just as you prepared it for your Dr. L visit because he just requested this from me. Dr. K is going to try to understand how this is/has impacting/impacted our whole family, not just Lauren (genetic connection, specific strain connection, maybe). So I have been spending every spare minute compiling medical history x3 I will use the medical records as reference points of the summary I prepare. He looks at all of this before doing a phone consult or meeting him in person. I agree with you that it's easier to lay it all out on paper..good luck.

 

Lynn

 

 

Thanks for your encouragement. I have been trying to take off my "PANDAS glasses" for the last few days and do some reading on rage seizures and bipolar. The bipolar does seem to fit, not so sure about the seizures though I have found much less information about that. Regardless, that is something that is "testable" and I am happy to rule it out. As I said in my original post to the forum, my son's history seems to match Dr. T's PANDAS Type 1 for his onset at age 6-7, but not currently. My son was not without symptoms prior to this sudden onset (that's why we were already involved with a child psychiatrist), just that the OCD and separation anxiety seemed to explode suddenly at that time with alll sorts of new symptoms. Could the 4 days of Paxil we gave him activated this? I don't know. That's what we thought at time, until months later when we learned about the strep/PANDAS connection. When I look back at how I presented my son's symptoms prior to that day to Dr L, I can see where it wouldn't sound like PANDAS. There was an increase in anxiety tantrums/fits, emerging tics, night terrors and sleep walking/urinating, sensory dysfunction, extreme shyness, some ordering and symmetry stuff, need to know/just right OCD stuff from age 3-6 but it was not sudden, not a "day" like the episode at age 6.

 

I totally relate to your psychologist story. We had a 3 month wait to see the psychiatrist when son was 6, so got into see a psychologist who was supposed to be specializing in anxiety disorders right away once we decided we really needed help. My son threw a huge rage in his office over me saying only 1 piece of candy, not 2. We had to carry him out kicking and screaming. I thought maybe the psychologist had set this scenario up in offerring the candy as some sort of diagnostic thing. Turns out he wasn't that smart - he was just trying to be nice. We wasted 9 months with this guy, the whole time my son telling me he wasnt helping at all (and this from a 6 year old), until his diagnosis of OCD, when I confronted the therapist as to his knowledge of pediatric OCD and he admitted we needed to find someone else.

 

I'll be very interested to know if Dr. K actually reads all you are sending him. I sent Dr N a typed history and it was clear in our phone consult she hadn't read it. So it tried to be more prepared for Dr L's visit with something more succinct. Dr. L's office did not want me to send anything ahead of time, and she did not want to look at the compilation timeline I had written out (compiling 10 years...) - said she does better just hearing it. Which is unfortunate because I don't do better telling it, I do better writing it...I have been looking a long time trying to figure out how all the pieces fit together for my son. Many of the pieces do come together in reading newsletters from the bipolarchild.com website. And yet, I know that some of you have said your PANDAS diagnosed kids have similar symptoms that remitted after treatment. Knowing what I know about PANDAS, its so hard to let go of the connection to his explosion in symptoms, all the strep infections and his recovery after the clydamycin/tonsillectomy. The only time I can say things remitted for our son was then. And even then there were some left over OCD things that caused us to put him back on a tiny dose of Celexa. And of course now I wonder if using SSRIs for so many years has brought on/activated bipolar with puberty. Or maybe this is what PANDAS looks like when left untreated for so many years?????

[coco]

Vicki,

 

I am not sure what you are trying to say here. Worn out mom just explained her whole appt and the follow up testing. Sounds like Dr L did a thorough job. Their search is not over yet and I hope that from some of these new tests they can find answers and full recovery for their child. As for not posting your doctors, its a personal opinion. But my point was if you are publically willing to criticize other doctors and use their name on the internet without knowing them, using the term hasty when that is the last thing Dr L is, is hasty. But you don't post your own docs name because you feel this is inappropriate, morally its should then be inappropriate to talk of others docs. Clearly, Buster and Eamom were the first to have a child treated for Pandas (by this team) and their childs success will hopefully make believers of these docs. Small baby steps. Bombarding these docs whom are not experts (but open to research protocols) with every person from the country flying in looking for a PANDAS doc (self diagnosing their child) of course would be a disaster. If this is their first case they still have not acquired the diagnostic ability to handle mutiple case loads from everywhere. Not to mention the insurance mess. Listen, what Dr K, Dr L and Dr T are doing is they are the founders of the study of pandas. A huge responsibility and liability but not many (very few) doctors these days are founders anymore. Dr L didn't have so many pandas patients until mdmom started posting after that she has received a huge surge in pandas cases seeing all types of people from around the world. She is not turning people away.

Its not about feelings, its about the hundreds of others who read this site and now walk away thinking Dr L makes hasty decisions. And this may affect her patient relationship. Do you know how many calls were generated by cocos post last week about ivig dosage and kids with cvid? The acn post were small, but the amt of noise it created at the docs office was huge.

I do not know how they can run an office when everytime we post the docs get multiple calls from frantic parents.

But they do and they are kind and help our children.

 

 

 

I'm going back and forth here if I should post anything. So I will post a reminder that every child is different. Every appointment is probably handled different. I have not seen any of the experts so I do not have ties to any of them or any personal feelings towards any of them.

 

With wornoutmom/dads child, it could very well be that if they went back to Dr L's office a month from now, the "story" would be different. It is sometimes a matter of how a child is presented and how a doctor views the information. Two of the experts that are listed on here have given conflicting info to different parents.Opinions on this disorder, how it should be dx, how it should be treated, and various details on what a PANDAS parent should do for their child doesn't really seem to have consistency right now (even among some of the experts).

 

I am so happy Dr L was amazing to a good number of families, but as it was stated, she is human. And there's always a chance this child's case may not have been handled as beautifully as others.

 

The best thing for this family to do is to pick themself up and go on. get the second opinion they plan to do and maybe once things settle, try to have both dcotors conference about their child.

 

As for EAMom and Buster...I understand why they choose not to publicly post their doctos's info. Let's face it, parents on here put them on a pedastal. If they posted their docs' info, people would be booking flights instantly to see their doctor and requesting the "Buster/EAMom child protocal". Perhaps the doctor specificly asked them not to post his/her name. So I wouldn't hold that against them. Now, personally, I don't know I how I feel about giving the name to locals but not everyone. Maybe that should be rethought. All or none. But I understand not posting publicly.

Nevergiveup,

 

I am hoping that my post regarding ivig dosages just provided more "food for thought" on the subject and not a run on the bank from neurotic parents banging on the doors of unsuspecting doctors demanding that protocol. To be honest, and it is not my intent at all to come across as anything but totally committed to getting my suffering daughter well as quickly as possible, offer others encouragement, and share what I have learned with as many others who are seeking, just like me. I am less concerned with physician's offices handling a busy call load. Perhaps it can be turned into a "positive" because it is forcing less experienced pandas doctors to consult with the more experienced, and in the end maybe, just maybe, there will be enough experienced ones out there to handle the tidal wave that is about to hit. I have no idea how many calls my post generated, but I hope it was enough to move our cause along, because without parents pushing, this ain't going nowhere. I had a friend the other day say to me, "Wow, I think might to be too selfish to pass all the information you've gathered on to others because it might make your place in line get pushed back that much farther, after all you've been through." She may be right, but, I have to believe that one good turn derserves another and that giving back is part of this journey, however you choose to do so.

[MomWithOCDSon]

It seems we all keep running into these issues . . . this PANDAS thing is still so new to many in the medical community, and even to the "experts," their views of what constitutes PANDAS and what doesn't, which treatments are effective and which aren't, and even dosages for treatments (abx and IVIG) are inconsistent and lack a cohesive protocol. It confuses parents, it confuses the medical community overall, and it makes getting effective treatment that much more difficult. That said, I'm not blaming anyone because we are ALL trying to do our best with what we're given and what we know. It's just too early in the evolution of the treatment protocol to have that cohesive answer yet.

 

So I keep returning to a certain theme here: we know our children best. When something doesn't look right, doesn't feel right, doesn't sound right, doesn't smell right, doesn't seem right . . . it probably isn't right. We may not have the medical answers, despite all the research and exploration, but we know when something isn't working for our children.

 

My dad has had a number of tremendous medical challenges over the years: diagnosed with terminal cancer at 22, beat it, much to the surprise of docs at NIH who continue to study him because he is the ONLY living survivor of his particular cancer from his generation; subsequently has lost most of his mobilitity and strength because the massive amounts of radiation he underwent in the 1950s and 60s gave him bones as brittle as a thin, dried cracker. He sees doctors of almost every ilk, several times a week. And one of his mantras is: "You know why they call it PRACTICING medicine, don't you?! 'Cause they're practicing on US!"

 

I carry that around with me, and as a result I am now very proactive, loud (okay, maybe even obnoxious ) when it comes to my healthcare and my child's healthcare. I truly believe it is a little bit of a cop-out, maybe even dangerous, to accept one person's answer for anything, even if that person is identified as an "expert." There are way too many variables involved, and too much unknown. What if genetics play a part? What if the environment plays a part? What if EVERYTHING is part of the mix? At this stage of the game, how can anyone have the 100% correct answers 100% of the time?

 

I'm no scientist and a lot of the more clinical stuff discussed here is way over my head. But, again, one thing I DO know is my child. So I'm following the lead of some others here on the board, as well as my own instincts, and I'm letting his behaviors be my guide. If we try a treatment and he improves, then that treatment is right for him. If he backslides dramatically, then we will go back to the drawing board and try something else. I will try to be patient. And I will try over and over again until we find what works most often and for the longest duration. And if that means I turn to a local, unknown doctor, or an "expert" or whomever, then I will try every resource I can find.

 

I think all these docs . . . known and unknown . . . are doing the best they know how. They just don't know everything. And they don't know our kids like we do. So, it's up to us to keep fighting.

[nevergiveup]

Coco , First the posting I gave was added to part of vicki's response by accident. Second, my comment in reference to your dosage post was to demonstrate to eamom how many people are influenced (the silent watchers) by our post and our comments. It was not an opinion on whether or not you should have posted this info. Personally, I feel that your post was extremely helpful and may help many children in future. This type of info is critical to get out. I in NO way felt that this post should have not been written. The amount of noise heard was notable. ( This is why we need to be careful before we criticize anyone's professional reputation.) People are reading and watching. The parents are making a difference, its amazing. And medical treatments, successes and protocols need and should be shared. Your post may change the lives of many children, including my child. What ever made you think I was critizing it. It was however a post that made me realize how influencial what is said here can be. I talked with several docs that day and the secretaries commented on the rush of calls asking about the dosage of ivig. So you made a very big difference and as I said may have changed the prognosis for many kids. Noise is not necessarily bad noise. This noise was the right noise. Anyone on this forum should be allowed to post whatever they want. And anyone else on this forum can contest or challenge as needed. Its what makes this forum work.

 

 

 

 

Vicki,

 

I am not sure what you are trying to say here. Worn out mom just explained her whole appt and the follow up testing. Sounds like Dr L did a thorough job. Their search is not over yet and I hope that from some of these new tests they can find answers and full recovery for their child. As for not posting your doctors, its a personal opinion. But my point was if you are publically willing to criticize other doctors and use their name on the internet without knowing them, using the term hasty when that is the last thing Dr L is, is hasty. But you don't post your own docs name because you feel this is inappropriate, morally its should then be inappropriate to talk of others docs. Clearly, Buster and Eamom were the first to have a child treated for Pandas (by this team) and their childs success will hopefully make believers of these docs. Small baby steps. Bombarding these docs whom are not experts (but open to research protocols) with every person from the country flying in looking for a PANDAS doc (self diagnosing their child) of course would be a disaster. If this is their first case they still have not acquired the diagnostic ability to handle mutiple case loads from everywhere. Not to mention the insurance mess. Listen, what Dr K, Dr L and Dr T are doing is they are the founders of the study of pandas. A huge responsibility and liability but not many (very few) doctors these days are founders anymore. Dr L didn't have so many pandas patients until mdmom started posting after that she has received a huge surge in pandas cases seeing all types of people from around the world. She is not turning people away.

Its not about feelings, its about the hundreds of others who read this site and now walk away thinking Dr L makes hasty decisions. And this may affect her patient relationship. Do you know how many calls were generated by cocos post last week about ivig dosage and kids with cvid? The acn post were small, but the amt of noise it created at the docs office was huge.

I do not know how they can run an office when everytime we post the docs get multiple calls from frantic parents.

But they do and they are kind and help our children.

 

 

 

I'm going back and forth here if I should post anything. So I will post a reminder that every child is different. Every appointment is probably handled different. I have not seen any of the experts so I do not have ties to any of them or any personal feelings towards any of them.

 

With wornoutmom/dads child, it could very well be that if they went back to Dr L's office a month from now, the "story" would be different. It is sometimes a matter of how a child is presented and how a doctor views the information. Two of the experts that are listed on here have given conflicting info to different parents.Opinions on this disorder, how it should be dx, how it should be treated, and various details on what a PANDAS parent should do for their child doesn't really seem to have consistency right now (even among some of the experts).

 

I am so happy Dr L was amazing to a good number of families, but as it was stated, she is human. And there's always a chance this child's case may not have been handled as beautifully as others.

 

The best thing for this family to do is to pick themself up and go on. get the second opinion they plan to do and maybe once things settle, try to have both dcotors conference about their child.

 

As for EAMom and Buster...I understand why they choose not to publicly post their doctos's info. Let's face it, parents on here put them on a pedastal. If they posted their docs' info, people would be booking flights instantly to see their doctor and requesting the "Buster/EAMom child protocal". Perhaps the doctor specificly asked them not to post his/her name. So I wouldn't hold that against them. Now, personally, I don't know I how I feel about giving the name to locals but not everyone. Maybe that should be rethought. All or none. But I understand not posting publicly.

Nevergiveup,

 

I am hoping that my post regarding ivig dosages just provided more "food for thought" on the subject and not a run on the bank from neurotic parents banging on the doors of unsuspecting doctors demanding that protocol. To be honest, and it is not my intent at all to come across as anything but totally committed to getting my suffering daughter well as quickly as possible, offer others encouragement, and share what I have learned with as many others who are seeking, just like me. I am less concerned with physician's offices handling a busy call load. Perhaps it can be turned into a "positive" because it is forcing less experienced pandas doctors to consult with the more experienced, and in the end maybe, just maybe, there will be enough experienced ones out there to handle the tidal wave that is about to hit. I have no idea how many calls my post generated, but I hope it was enough to move our cause along, because without parents pushing, this ain't going nowhere. I had a friend the other day say to me, "Wow, I think might to be too selfish to pass all the information you've gathered on to others because it might make your place in line get pushed back that much farther, after all you've been through." She may be right, but, I have to believe that one good turn derserves another and that giving back is part of this journey, however you choose to do so.

[EAMom]

"You know why they call it PRACTICING medicine, don't you?! 'Cause they're practicing on US!"

I totally agree with you (and your dad)! An example would be how certain docs have changed their protocols within the past year...becoming more aggressive with antibiotic doses and type (more full-strength/high dose, more augmentin xr/azith). Nobody has all the final answers. It's the truly great doctors that will look back on what has and has not worked and be willing to change and adapt and grow.