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article..docs not listening..nor writing it down


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this only goes to prove...

when i would tell a doc, 7 years ago about strep causing tics for ds, one of the things they would say is...i've never heard of that before...in the last couple years i've finally have gotten pissed enough to say...

"well if you don't write it down..no one else will either..."""

 

http://pagingdrgupta.blogs.cnn.com/2010/08/23/what-does-your-doctor-hear-when-you-talk/?hpt=Mid

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This is very interesting. In the 4-5 months prior to our PANDAS dx, everytime we had either of our kids in the pediatrician, we were talking to him and asking advice on our 2 year old's behavior. He bacame aggressive, difficult, violent overnight - as if he magically recieved the memo that it was time to enter the "terrible twos". Of course we ALL thought it was behavioral - all 2 year olds go through it, but my doctor made a note of the discussion EVERY time we had it. When we finally made an appointment to see him specifically because of the behavior - something was just "not right". He was able to go back and trace the start of those conversations to shortly after an impetigo infection - which helped him "try" the PANDAS dx/abx treatment first.

 

If only all doctors took good notes!!!

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Very interesting topic.

 

Brings me back to one time, early on in my dd's pandas exacerbation when I had been in the doc office and calling constantly but they just didn't see anything except that she was definately a little 'weird'. Meanwhile we had been going through pure heck at home and everwhere. It continued and the providers saw more and more of things, heard more of my stories of what was going on, my pleas for HELP....I can't tell you how many visits.

 

One time my dd was raging like a wild animal right in front of their eyes and they were saying how they had never seen anything like that in their lives, including during their residency at a children's psychiatric hospital. It was obvious that they didn't know what to do, no clue...but I recall BEGGING..."If nothing else, for GOD SAKES please document that you witnessed this so in the future new doctors who CAN help will believe me!!!" From then on we had excellent records.

 

Now I have copies of all records, it's funny, in the beginning of the pandas - they wrote things like "odd child" or something or "mother is concerned" rather than real objective documenation of exactly what they were seeing.

 

Sometimes our docs hands are tied and they just can't help or don't have the knowledge/experience to help...but those people can still help serve a purpose to us by documenting very well what they see and exactly what the parents say about the child. That can help justify further care/treatment later down the line.

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I have to reply to this as well. Having received all my daughter's medical records from our former pediatrician (she brushed me off when I mentioned PANDAS while my daughter was in the midst of a 7 month battle with recurrent strep and began to have tics & emotional lability) I found that she did not document very well on our sick visits. I kept calendars for the first 2 years of my daughter life and wrote every illness down, especially strep at 7 weeks, 3 months, etc. That pediatrician would test her every appt for strep no matter what b/c ahe had strep more than 10 times in her first 2 years of life. Do you think she documented all those positive strep cultures-NO! Of course it wouldn't have mattered if my daughter did not develop PANDAS at the age of 4. It is inexcuseable-I needed those records to document the abnormally large number and young ages at which my daughter had strep. Good thing I kept my own calendars-I brought those with me to our initial appts. with Dr. L & Dr. B.

 

My friend called me yesterday c/o the same thing with the same pediatrician. She took her son out of town to an ENT for PE tube evaluation & when the ENT was reviewing the medical records,he found about half of the infections he had been diagnosed with by her.

 

It's really sad after all the money they charge for a sick call!

Edited by AmySLP
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