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looks like i am leaving the club...


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Wornout parents- I am so sorry for your heartache and confusion. I wish for you answers and healing.

 

Everyone else- I certainly agree a parent MUST go with their gut, and it is ALWAYS smart to get a second opinion, BUT you must all remember Dr L is one of the good guys. She goes to the mat for pandas EVERY day. She is extremely knowledgeable, compassionate and credentialed. She is the ONLY dr that offers PEX, IVIG, ABX, and steroids when indicated. She spends at least 1.5 hours with a new patient, taking a detailed history, asking thoughtful questions and examining the child. I can guarantee she is familiar with the many forms pandas takes. While I am not saying she is infallible (who is?), I am saying we are doing a parent a dis service by telling them Dr L is wrong, based on an Internet history, and our "pandas colored" glasses. (not to mention biting the hand that feeds us).

I love this forum, but hope that in the future this negatvity can be spoken through PM.

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DCMom - fair enough.. you're right about keeping it above board and civil. I know that I and probably others get a little "triggered" by it all sometimes and re-live our past fights through our opinion-giving. I feel rightly admonished :-)

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DCmom,

I know Dr. L. is one of the "good guys", but nobody is perfect. I still feel that her decision to dismiss wornoutmom's son as "not PANDAS" was made in haste.

 

IMO, the Cunningham tests, a 1-2 mo. trial of high dose Augmentin XR/Azith., and possibly later a steroid burst are in order b-4 submiting a child to a lifelong diagnosis of bipolar disorder. Maybe he is PANDAS, maybe he is not...but if he were my child I would want to give him the benefit of the doubt, because treating a PANDAS child with bipolar meds for the rest of his life isn't going to do anyone any good.

 

The hx of illness and pychiatric problems which resolved after tonsilectomy/Clindamycin in 2nd grade, only to return 1 year later just screams PANDAS IMO. And yes, it is important to protect the "good guy docs"...but it is even more important to protect our kids.

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It is totally possible that it isn't PANDAS, but it seems you'd want to rule out the others. What I think you've indicated is that SSRIs did not seem to stabilize mood. This seems really consistent with other reports on this panel and in Murphy's report where they saw greater activation on SSRI's -- I don't think it is exactly the dose, but rather that if the antibodies are interfering with dopamine receptors, then that SSRI is acting like turning up the volume on your TV show and then the antibody comes along like a loud commercial. What I'm getting at is it's like the body can't quite get the dopamine regulated because there is actually something interfering with the receptors (not with the dopamine itself). This, in my opinion, is why there is activation on SSRIs -- you're adding dopamine to an unregulated baseline -- you'll still get the peaks and valleys but with higher peaks (and higher valleys) -- meaning disinhibition occurs.

 

Buster,

 

What you wrote is a little on the technical side for me, but I think I understood it. I think you're saying that for someone with PANDAS, an SSRI will just make the mood swings (peaks and valleys) more dramatic. I have to say, back when I was being treated for "depression" with fluoxetine (generic for prozac), I described the effect it had on me, in a matter of a couple/few days, as making me bipolar. Seems to fit well with what you're said there. I've always really marveled at the number of psych- people I've seen, and not one of them ever suggesting bipolar! I have sometimes felt that way. And now to see this list (later in the thread) of the bipolar symptoms ... let's see now, we have bipolar, PANDAS, lyme, and fungal infections all with more or less the same list of symptoms ... have to agree with the "holy guacomole" comment! My inclination, just intuition I suppose, is to agree with, I think it was EAMom's idea, the bipolar is more likely to be the misdiagnosis. After all, that's the one that just says you're screwed up forever and we have no idea why, which, to be fair, isn't a very sophisticated theory.

 

Michael

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EaMom

 

Since Dr. Latimer was so hasty, please recommend whom she should see? Did you and buster see Dr. K? I cannot recall exactly whom gave your child 2 grams per kilogram?

 

I think she should take Dr. T. up on his offer for a phone consult and even consider seeing him in person. She could also do a phone consult with Dr. K.

 

Additionally, she can do the Cunningham test w/out seeing anyone (she should do this test regardless IMO.)

 

We had IVIG done locally (Stanford--LPCH). The 2gm/kg dose was based on Dr. K.'s recommendation (via e-mail). Dr. K. agreed that the higher dose (vs. his usual 1.5 gm/kg) made sense due to our dd's hx of anorexia nervosa and her age. (Dr. K. was willing to do IVIG for us if we couldn't find someone local.)

 

By the way 2gm/kg (1gm/kg/day over 2 consecutive days...so 2gm/kg total) is the dose that Swedo used in her study.

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I am sorry I still am not clear as to whom was your immun doc, neuro, Who diagnosed the pandas and whom did the ivig?

 

 

 

 

 

 

 

EaMom

 

Since Dr. Latimer was so hasty, please recommend whom she should see? Did you and buster see Dr. K? I cannot recall exactly whom gave your child 2 grams per kilogram?

 

I think she should take Dr. T. up on his offer for a phone consult and even consider seeing him in person. She could also do a phone consult with Dr. K.

 

Additionally, she can do the Cunningham test w/out seeing anyone (she should do this test regardless IMO.)

 

We had IVIG done locally (Stanford--LPCH). The 2gm/kg dose was based on Dr. K.'s recommendation (via e-mail). Dr. K. agreed that the higher dose (vs. his usual 1.5 gm/kg) made sense due to our dd's hx of anorexia nervosa and her age. (Dr. K. was willing to do IVIG for us if we couldn't find someone local.)

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Here's our early (pre-IVIG) hx if you aren't already familiar with it. http://www.pandasnetwork.org/case2.html

 

Our private practice (OCD specialist) child psychiatrist agreed with the provisional PANDAS diagnosis that was proposed by 2 pediatricians, a psychologist, and us (parents) while our dd was in the hospital (for malnutrition/acute food refusal). A private practice pediatric neurologist, a pediatric rheumatologist, and a pediatric immunologist (Stanford--LPCH) later agreed with the diagnosis based on hx and our dd's response to antibiotics. It was the pediatric immunologist who ordered the IVIG based on dd's Cunningham test results (high PANDAS range while not in an exacerbation) and this immunologist followed Dr. K.'s recommendation on dosing since this was the first PANDAS patient they (Stanford) had treated with IVIG.

 

BTW, my dh and I have a policy of not posting the names of our docs but are always happy share them with local (ie CA) parents (via PM) on this forum.

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Hence, my point exactly, if you cannot post your docs for treatment, I would not publicly post negative comments about other docs who do treat pandas. I completely agree with worn out moms need to get a second opinion, many people do. But since you were not in the room with dr. L, I think it is rather presumptuous of you to publically POST, Dr L made a HASTY decision. She spent four hours with my dd during the height of her exaserbation ( day three of a horrible attack). She makes no money prescribing IVIG, nor does she get paid during the treatment only for a consult. She cares for these kids and unlike your docs, publically treats pandas. Please be more careful with your wording. I know she would do everything she could to help worn out mom's child.

 

 

Here's our early (pre-IVIG) hx if you aren't already familiar with it. http://www.pandasnetwork.org/case2.html

 

Our private practice (OCD specialist) child psychiatrist agreed with the provisional PANDAS diagnosis that was proposed by 2 pediatricians, a psychologist, and us (parents) while our dd was in the hospital (for malnutrition/acute food refusal). A private practice pediatric neurologist, a pediatric rheumatologist, and a pediatric immunologist (Stanford--LPCH) later agreed with the diagnosis based on hx and our dd's response to antibiotics. It was the pediatric immunologist who ordered the IVIG based on dd's Cunningham test results (high PANDAS range while not in an exacerbation) and this immunologist followed Dr. K.'s recommendation on dosing since this was the first PANDAS patient they (Stanford) had treated with IVIG.

 

BTW, my dh and I have a policy of not posting the names of our docs but are always happy share them with local (ie CA) parents (via PM) on this forum.

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I have to say that I feel like this thread is getting a bit ugly, and being that it generated from reactions to my own experience, I am hoping it will stop soon. Dr L spent 2 hours with us and listened closely, and gave us her professional opinion. As I stated earlier, since our son's case did not clinically fit "classic PANDAS" for her, she was clear that she did not want us to start down the PANDAS treatment path, only to be missing something else significant. I can appreciate that thoroughness, as this is exactly what I have been saying to our local psychiatrist - "I feel like we're missing something". She then ordered several blood tests and suggested several follow up neuro imaging tests to be done. She emailed the referral to the dr. in MI while we were in the room and gave us his contact phone number. She would have been willing to have the tests done in town if we were planning to stay longer. While I was not expecting and was thrown by her opinion, the reason we chose to fly there rather than to see Dr K, who is closer, is because we had never seen a neurologist and had wanted to get that perspective and piece of expertise as well. I appreciate each and everyone of your posts and perspectives and advice and support, as they have given me much to think about and much inspiration to keep on asking questions and trying to find the right answers. They help me feel a little less "worn out". With this referral in MI we will be getting an additional neurological opinion, and I plan to consult with Dr. T for another PANDAS/neurological opinion as well. We await results of the bloodwork. Dr L did not put up a roadblock, just sent us down a different road to look at. Who knows what we will find there, but if we don't look, we'll find nothing. With your support I have come to realize we can still revisit the other road if this one comes up empty, or find a way to look down both at the same time, which may be the best thing.

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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).

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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.

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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.

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I don't post a lot but I keep up with the board and have followed this thread closely. Wornoutmom and I are going through VERY similar situations. Down to the doctors and Pandas / non-Pandas, biploar, etc. All I want to say is that we need to remember this disorder is still so new and nobody has all of the answers. If they knew more, we could all take our children to any doctor, run tests A,B and C and take med x! It is simply not the case. SO... we go to the doctors, present our case and take their suggestions. I feel certain that each of these Pandas "expert" doctors are helping each child as best than can and based on what they are presented. That doesn't mean a second doctor might not see it from a different perspective. There is certainly nothing wrong with that.

 

I kind of agree with everyone here. We don't need to bash the doctors. We also don't need to put any of them up on a pedestal so high that we cannot believe they might have missed something. And I know we can all agree we all just want what is best for the children.

 

Now... wornoutmom and dad. I hope you consulted with Dr. T. I did and he did give me a fresh perspective and some other things to look at closer. We just have to keep digging for answers. Good luck!

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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).

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