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After taking an emotional toll trying to work with the systems here (docs telling me she's peeing for attention, maybe we should try to find a parenting class, and the best "parents have a hard time understanding their effect on inducing pathology in their children's behavior" - this from doc who has seen me & dd4 maybe 20 minutes in total over the past 5 months), I have spoken to Dr. T and Dr. K, and sent all of her labs/behavior descriptions/history/diagnosis/treatment plans from everyone to both of them for second opinions.

 

My question - how long until you hear back?? I was surprised when I called Dr. T's number that he actually answered the phone, and then emailed him the reports using the email on his website. With Dr. K, I used the i-consult link - it says on the auto-reply that we should get a response within 72 hours (sent on Thursday evening) - I'm thinking the weekends don't count.

 

Has anyone from Canada consulted with either - how long until you heard a reply? What is in the reply? Do they ask for more tests to be done, can they give a diagnosis? I know Dr. T stated he can't treat her in Canada (not licensed here, but if we were to come to the states, then he could), but he would be willing to work with a local doc to help guide....

 

It has been so hard to keep going - I've said it before, but I will say it again - this forum has made a world of difference and gives me the strength to keep going. If it is a behavioral diagnosis, then we will deal with it - I think what is bothering me is that the docs here just don't know what is wrong with her and then default to the easiest answer - our parenting and/or emerging behavioral diagnosis. I'm a clinical social worker (which the docs don't know as they have never asked) - kids who have a behavioral diagnosis and who are not treated do not generally exhibit such a wax and wane pattern in their behavior. This is what I am challenging and I don't think they like seeing me in their office (extreme pain in the behind for them I'm sure), as much as I like going either.

 

I'm bent on getting a proper diagnosis - a shrug of the shoulder, "this is so rare", given parenting tips, power trips, etc - all very tiring and a waste of time. But I feel like we have to do this dance in order to respect the system as these are the same people who will treat her locally (we are very rural), both for emergencies and ongoing issues.

 

Thankfully, thanks to the naturopathic doctor, she is coming back to her baseline and we have some really great days. She is able to verbalize more the intrusive thoughts, obsessions, and compulsions - she said yesterday that she had bad words in her head that won't go away. My fear (and I'm not alone is this from reading other posts) is what next? The next virus/bacteria/fever - what are we going to get? And if she doesn't have the proper diagnosis, how much more time are we going to lose, standing by while she looses chunks of her life struggling?

 

And then I get tired, and I think - maybe this is just us that suck as parents? But that doesn't quite feel right - we are not perfect by any means, but to have the sudden, severe onset of symptoms following a physical illness? I'm thinking that if we were the "creators" of her pathology, that should take some time to build up....

 

I don't know - time for a nap :)

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After taking an emotional toll trying to work with the systems here (docs telling me she's peeing for attention, maybe we should try to find a parenting class, and the best "parents have a hard time understanding their effect on inducing pathology in their children's behavior" - this from doc who has seen me & dd4 maybe 20 minutes in total over the past 5 months), I have spoken to Dr. T and Dr. K, and sent all of her labs/behavior descriptions/history/diagnosis/treatment plans from everyone to both of them for second opinions.

 

My question - how long until you hear back?? I was surprised when I called Dr. T's number that he actually answered the phone, and then emailed him the reports using the email on his website. With Dr. K, I used the i-consult link - it says on the auto-reply that we should get a response within 72 hours (sent on Thursday evening) - I'm thinking the weekends don't count.

 

Has anyone from Canada consulted with either - how long until you heard a reply? What is in the reply? Do they ask for more tests to be done, can they give a diagnosis? I know Dr. T stated he can't treat her in Canada (not licensed here, but if we were to come to the states, then he could), but he would be willing to work with a local doc to help guide....

 

It has been so hard to keep going - I've said it before, but I will say it again - this forum has made a world of difference and gives me the strength to keep going. If it is a behavioral diagnosis, then we will deal with it - I think what is bothering me is that the docs here just don't know what is wrong with her and then default to the easiest answer - our parenting and/or emerging behavioral diagnosis. I'm a clinical social worker (which the docs don't know as they have never asked) - kids who have a behavioral diagnosis and who are not treated do not generally exhibit such a wax and wane pattern in their behavior. This is what I am challenging and I don't think they like seeing me in their office (extreme pain in the behind for them I'm sure), as much as I like going either.

 

I'm bent on getting a proper diagnosis - a shrug of the shoulder, "this is so rare", given parenting tips, power trips, etc - all very tiring and a waste of time. But I feel like we have to do this dance in order to respect the system as these are the same people who will treat her locally (we are very rural), both for emergencies and ongoing issues.

 

Thankfully, thanks to the naturopathic doctor, she is coming back to her baseline and we have some really great days. She is able to verbalize more the intrusive thoughts, obsessions, and compulsions - she said yesterday that she had bad words in her head that won't go away. My fear (and I'm not alone is this from reading other posts) is what next? The next virus/bacteria/fever - what are we going to get? And if she doesn't have the proper diagnosis, how much more time are we going to lose, standing by while she looses chunks of her life struggling?

 

And then I get tired, and I think - maybe this is just us that suck as parents? But that doesn't quite feel right - we are not perfect by any means, but to have the sudden, severe onset of symptoms following a physical illness? I'm thinking that if we were the "creators" of her pathology, that should take some time to build up....

 

I don't know - time for a nap :)

 

 

Dr. K. can also only make consult with drs if he hasn't seen your daughter. You may have to make an appointment to actually come down to the states and see the doctor. Keep in mind that unfortunately, most of us have had to resort to traveling to get the proper care for our kids. If you are getting that kind of response from your doctors, it doesn't sound like they are going to be very open to consulting with a specialist here (I hope I'm wrong, but.....)

 

I'm going to PM you also.

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Hi, I often feel the same way as you. Always thinking what is going to come next. That was always my thinking and I still frequently feel that way. But things WILL get better with treatment.

And you just have to try to keep thinking this way. It's definitely tough, but on the plus side, you did catch this early and are not listening to the doctors who give their crazy diagnoses.

I am relatively new in this, 6 months, but I can say now that since sudden onset back in October, my DD5, is now at 95%!!

You are doing the right things by getting in touch with some of the best doctors.

Stay strong and let us know what Dr. T and Dr. K say. Best of luck!

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Just a thought...yesterday I visited the Beth Maloney's PANDAS website via the link that Eamom (I think) posted on a thread by London. I noticed a list of Canadian PANDAS friendly drs there. Might be worth checking out if you haven't already.

And those doctors who who take cheap (and really lazy!) swipes at our parenting skills...well karma will have its way with them! How dare they! Grr!

Edited by Ozimum
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