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What a let-down. Lame-O Doctors


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1. School. Teacher is barely able to humor me. DS holds it in, so it is hard for her to believe anything I say.

2. Lonely. Friends try to show care, but really don't understand- and quite frankly, seem dismissive. I am not a hysterical type. I did not advertise his behavior as OCD and only started talking about it when I discovered the PANDAS connection. It's a lonely road. I need sympathy.

3. Pediatrician. Is aloof and non-committal. Will humor me with a throat swab. Refers me to pysch who only treats the OCD.

4. Pysche. Has no concept or willingness to treat PANDAS and seems really unconvinced.

5. GIANT INFECTED TOE. On call pediatrician for his GIANT INFECTED TOE refers me to Infectious Disease Doc. I think, "Yay- someone who might know something"

6. Infectious Disease Doc Thinks she is going to crack the cause of his OCD by asking if anything else was going on last summer when his last episode appeared. (Hmm, do you think the pysche is perhaps a bit more qualifed to flush this out IF this was the cause?)

7. Hidden infections. Why can't ds just say "I have a sore throat" so I know where it is? I had NO IDEA that impetigo could be strep. He had it 2 weeks ago -the same time his last anxiety flared up.

8. Hence the crushed hope. for the appt w/infectious disease doc that I would get a game plan in identifying other signs of strep. But infectious disease doc wanted to be a pysche instead.

8. And get this. Each doc- all 3, have asked me "but has he been diagnosed with PANDAS?" Why have 3 different doctors asked ME if my son has been diagnosed. Aren't they the doctors?

 

Thank you. I feel better.

Edited by Sheila Rogers
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I'm glad you feel better...this forum is the place for venting. Welcome, you have found a group of moms (and some Dads) who completely understand what you are going through!

 

I can commiserate with #2 (somewhat)---my closest friend saw the dramatic behavior shift and the almost overnight recovery on predisone..but she is sick of hearing me talk about it now

 

and #6--I left the Infectious Disease Dr in tears because he couldn't say it was PANDAS because it was her first episode and there wasn't any pattern of "waxing and waning" that is supposed to be typical in PANDAS....but if she does get better and then has another episode, then he would say it was PANDAS...so generous and compassionate, don't ya think? Oh, and he also said...there is no real treatment anyway...take her to a pediatric psych. Why would you even agree to meet a child with suspected PANDAS, knowing full well you wouldn't treat it anyway? It has been a year since that appointment, and I am still so angry about it.

 

What part of the country are you from?

 

Here is a thread that lists helpful doctors:

 

http://www.latitudes.org/forums/index.php?showtopic=5023

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Mamakarata -- Your post made me wince and laugh at the same time! Oh boy, can I relate!

 

Our DS13 diagnosed with OCD over 7 years ago! I asked about PANDAS then and almost got laughed out of the pediatrician's, therapist's and psych's offices! It truly is a lonely feeling.

 

But now we have this forum, so even if we're alone in our immediate communities, we're not alone altogether. And we have directions and opportunities presented us for finding new and more qualified medical professionals, thanks to this forum and its members, so if your docs are determinedly set in their ignorance, then you can (and probably should) move on.

 

But . . . if you overall LIKE some of these folks and want to keep them around, you can maybe just add to the array of professionals in your corner and continue to feed info to the existing docs. It will certainly take some time, but you may find that you're able to educate and win over one or two of them. Our psych finally jumped on the bandwagon a few weeks ago, after resisting me for a long time! But thanks to this forum, I was able to bury him in research and information that he just couldn't ignore anymore . . . plus, he actually read it, which our pediatrician has yet to do. ;)

 

Hang in there! You have a virtual community that understands and supports; over time, you may be able to build a local community that will serve the same needs!

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Neurologist - who I waited two months for an appointment with. Both my ped and immunologist were referring to him thinking HE would be the one to help. First of all, he left my son and I sitting in the little examing room for nearly an hour and a half! Barely looked at my son, did NO sort of neuro eval, talked to him for 5 minutes and then had a nurse take him so we could talk, which I did want him to do. Told me DS has tourettes and tourettes can wax and wane and be aggravated by strep. Refused to consider trying long term ABX. I even showed him school work from pre first episode, during first episode, after ABX and current. He said it's the way TS goes... So I figure I'm at a neurologist and I tell him I'm concerned about Chiari. I have it and need surgery for it. DS has started with bad occiputal headaches and says he sees stars whenever he coughs or sneezes. Neuro tells me "oh ACM is NEVER hereditary". I could tell how far I was going to get with him so I just left it.

 

Requested written report later for CST from neuro. Sent me chicken scratch notes that didn't even HAVE a diagnosis on them!

 

Husband vent!!( and no offense inteneded I know there are some GREAT dads here). My husband just does NOT get it! He brushed off pandas at first. Finally admitted that sure seems accurate, but continues to say "he's just a kid. he'll grow out of it". When I bring up expensive doctor visits, meds, special education, he gets annoyed. But then the one time he took DS out himself and DS had a total rage attack in the car, he called ME on the cell phone expecting me to do something about it!

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Husband vent!!( and no offense inteneded I know there are some GREAT dads here). My husband just does NOT get it! He brushed off pandas at first. Finally admitted that sure seems accurate, but continues to say "he's just a kid. he'll grow out of it". When I bring up expensive doctor visits, meds, special education, he gets annoyed. But then the one time he took DS out himself and DS had a total rage attack in the car, he called ME on the cell phone expecting me to do something about it!

 

 

Have you shown your husband the Turkish paper (the one peglem posted) with the 4 adult men (had undiagnosed/untreated PANDAS since childhood)...they did not "grow out of it" and their lives were pretty messed up b/c of PANDAS/OCD/other psychiatric issues.

 

Here's the paper: http://www.turkpsikiyatri.com/en/default.a...icle&id=592

Edited by EAMom
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Neurologist - who I waited two months for an appointment with. Both my ped and immunologist were referring to him thinking HE would be the one to help. First of all, he left my son and I sitting in the little examing room for nearly an hour and a half! Barely looked at my son, did NO sort of neuro eval, talked to him for 5 minutes and then had a nurse take him so we could talk, which I did want him to do. Told me DS has tourettes and tourettes can wax and wane and be aggravated by strep. Refused to consider trying long term ABX. I even showed him school work from pre first episode, during first episode, after ABX and current. He said it's the way TS goes... So I figure I'm at a neurologist and I tell him I'm concerned about Chiari. I have it and need surgery for it. DS has started with bad occiputal headaches and says he sees stars whenever he coughs or sneezes. Neuro tells me "oh ACM is NEVER hereditary". I could tell how far I was going to get with him so I just left it.

 

Requested written report later for CST from neuro. Sent me chicken scratch notes that didn't even HAVE a diagnosis on them!

 

Husband vent!!( and no offense inteneded I know there are some GREAT dads here). My husband just does NOT get it! He brushed off pandas at first. Finally admitted that sure seems accurate, but continues to say "he's just a kid. he'll grow out of it". When I bring up expensive doctor visits, meds, special education, he gets annoyed. But then the one time he took DS out himself and DS had a total rage attack in the car, he called ME on the cell phone expecting me to do something about it!

 

Tantrums - I think we have the same neurologist... Plus mine put "normal" in the eval under my son's eyes..... Pretty funny. My son is the one that we just found out has a mucocele sitting on the medial rectus muscle of his right eye because the sinus infection was so big it eroded the bone of the eye orbit... but the Neurologist said everything was "normal". There is no way this kid had a conjugate eye gaze if the neuro even asked him to "follow my finger"! Please - our kids deserve better!

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To try to give this thread a little hope...comparing where we are now to 1 1/2 years ago is night and day. The word is spreading, and some (not the majority) are willing to listen. When we were diagnosed Jan/09 we basically had two choices of where to go. Now the list has grown. There are now 3 pediatricians, 2 immunologists, 1 gastroenterologist, 2 pediatric infectious disease doctors, and 3 pediatric neurologist in Charlotte alone that believe it is a real disease and needs to be treated. Now, they are still struggling with what to do to treat it, but are fascinated by the disease. I know also there are doctors at Wake Forest that will treat too. As a mother and a physician who has a child with the disease I think that I have more luck than others getting people to listen. I am alsways happy to talk to anyone that will listen about this damn disease. I really think it is not rare, but we are just smart enough to figure it out.

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We all understand your frustration .Been there ..and there.. and there. Ive even been to a Neurologist who placed my so in the hospital after dxing him with PANDAS for 3 days of IVIG.Then 3 weeks later decides that a paper he read says that IVIG is not helpful and totally drops us.So let me tell you this fight is not in anyway easy.Danny is doing very well right now I even hate to say it for fear of jinxing it. Hang in there and learn from those who have been there.Trying to convience MDs that their medical books may need to be updated is a fight I can not take on right now.It is our job as Moms and Dads to get our children treated a well again.

 

keep posting

 

melanie

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I do want to echo what Mommd said about being way ahead of where we were a few years ago. I first thought my son had PANDAS in 2003 and had noone to talk to about it. I still do not have support in my local medical community, but at least there are now doctors who are very dedicated to helping our children who are paving the way for the future. We need to kep moving forward.

Edited by kimballot
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To try to give this thread a little hope...comparing where we are now to 1 1/2 years ago is night and day. The word is spreading, and some (not the majority) are willing to listen.

 

 

yes - sometimes it is difficult to rejoice in the small glimpses of hope but they are there.

 

my son has been in a private school but we've gotten evals from the public system and he will be in public next year. we are moving (hopefully w/i same county). i've been checking out schools in neighborhoods we like. last week, i met with a principal. i was questioning guidance counselor availability and how they would handle problems. she said she was not familiar with pandas but when i explained, her face brightened with recognition b/c she had a boy last year who had intense anxiety and they later discovered he'd also had strep. as tough as this fight is, i just still think about where we'd be if we were trying to handle it behaviorally and didn't know anything about the multiple infections he has. . . and the many kids that are in that situation.

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And if my husband rolls his eyes at me one more time when I try to tell him what's occurring medically, I will pretend to be Moe OF THE THREE STOOGES AND POKE THEM HARD!!!!!!!

 

Oh, thanks, I needed that!

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Thanks for your responses. My #9 was edited off (It was funny but inappropriate)- I had a moment of not caring whether they believe it's PANDAS as long as I can get an rx.

 

By the way, our progress for DS,8, is totally positive. His presentation would be considered mild, which, imo, made it hard to detect the pattern, but treatable with a regular run of RX. So our struggle now is locating the infection so the ped will kick us out an RX.

 

I do now have the pleasure of letting his regular ped know that 8 weeks after his first RX for the positive throat strep, that his OCD is gone. NOT b/c of psych, NOT b/c he really didn't have OCD or GA, b/c psych officially dx him, but b/c we got rid of the infection. That is something for him to file away for future reference. Maybe for once, HE'LL be the one advising a parent of the possibility of PANDAS when he sees something similar.

 

Then I will also let him know that he had an anxiety spike 2 weeks ago, which was in conjunction with impetigo- something he has been treated for in the past. So, he will know (as I now know) that something as small as that could elicit anxiety.

 

DH and I are coming to the conclusion that the OCD and GA come only after his overnight presentation of SA/panic goes unchecked. In looking back at the pattern, it was after several weeks of this that he developed OCD, seemingly to cope. In my own research of this, I see a lot more about severe presentation, which made me distrustful of my initial conclusion of PANDAS.

 

It makes me think there are probably a lot more PANDAS kids that go un-DX b/c of mild presentation making it harder to separate from some kind of normal childhood phase. It makes sense that we'd see more severe stories, b/c parents are more desperate.

 

We went years dealing with the mild presentation off/on before understanding the pattern, mistaking it for a "phase" as we know kids go through just normally.

 

Probably not siting anything unique here, but just something I noticed.

 

I wanted to also add about the issue of DH's not believing it. My experience was similar only in that DS was very careful to hide his anxiety from DH as much as he could. So DH wasn't seeing the severity. I was doing more of the night time routine, when the fears were their highest, so struggled more than anyone with DS over this. Consequently, our relationship was greatly affected by this. In good ways, and not so good ways.

 

It wasn't until DH was trying to drop DS off at school, when DS's OCD was at an all time high- and DS couldn't get out of the car for fear that the daytime field trip would somehow turn into an overnight trip- that DH called me later, totally crushed, because he saw firsthand how debilitating his OCD had become. THEN I had the emotional support to get the OCD treated, and found PANDAS in my research of OCD.

 

DH is so much better at abstract conceptualization which, quite frankly, is helpful in detecting patterns of behavior. Being emotionally exhausted (and sort of alone) makes it hard to be sharp enough to detect the off/on pattern. You feel like it has always been this way. When DH jumped in (finally) he was able to point out from a more outside perspective- that his anxiety seemed to come and go, which brought me closer to connecting this to PANDAS.

 

So on one hand, it is good for DH to have been a little removed, but harder to initially come to ANY conclusion. (i.e. frog in boiling pot)

 

Sorry for the ramble. Feels soooo good to post when I can.

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I'm glad you feel better...this forum is the place for venting. Welcome, you have found a group of moms (and some Dads) who completely understand what you are going through!

 

I can commiserate with #2 (somewhat)---my closest friend saw the dramatic behavior shift and the almost overnight recovery on predisone..but she is sick of hearing me talk about it now

 

and #6--I left the Infectious Disease Dr in tears because he couldn't say it was PANDAS because it was her first episode and there wasn't any pattern of "waxing and waning" that is supposed to be typical in PANDAS....but if she does get better and then has another episode, then he would say it was PANDAS...so generous and compassionate, don't ya think? Oh, and he also said...there is no real treatment anyway...take her to a pediatric psych. Why would you even agree to meet a child with suspected PANDAS, knowing full well you wouldn't treat it anyway? It has been a year since that appointment, and I am still so angry about it.

 

What part of the country are you from?

 

Here is a thread that lists helpful doctors:

 

http://www.latitudes.org/forums/index.php?showtopic=5023

 

#2- I have this feeling that a few of my friends have had a convo (one of them a nurse) and are concluding that I am being overly sensitive to "normal" phases kids go through.

 

#6 - That sucks. Maybe a pre-req for infec disease peds is callous insensitivity. B/c she had that to the highest degree. Bordering condescending.

 

I am North Calif- and trying to get help within Kaiser. I called one doc from the list and minimum fee was too high. If we weren't able to control it so far with a regular run of RX (cephalaxin worked) then I'd figure out a way. Thanks for the support.

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Mamakarata -- Your post made me wince and laugh at the same time! Oh boy, can I relate!

 

Our DS13 diagnosed with OCD over 7 years ago! I asked about PANDAS then and almost got laughed out of the pediatrician's, therapist's and psych's offices! It truly is a lonely feeling.

 

But now we have this forum, so even if we're alone in our immediate communities, we're not alone altogether. And we have directions and opportunities presented us for finding new and more qualified medical professionals, thanks to this forum and its members, so if your docs are determinedly set in their ignorance, then you can (and probably should) move on.

 

But . . . if you overall LIKE some of these folks and want to keep them around, you can maybe just add to the array of professionals in your corner and continue to feed info to the existing docs. It will certainly take some time, but you may find that you're able to educate and win over one or two of them. Our psych finally jumped on the bandwagon a few weeks ago, after resisting me for a long time! But thanks to this forum, I was able to bury him in research and information that he just couldn't ignore anymore . . . plus, he actually read it, which our pediatrician has yet to do. :P

 

Hang in there! You have a virtual community that understands and supports; over time, you may be able to build a local community that will serve the same needs!

 

Thank you! I needed a dose of optimism. Because of you, I am sending a note to my ped to give him an update of our success with the RX. He needs to know.

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