Friday, September 10, 2010

blah... that is about all I have to say.

Sweet Pea had her monthly PANDAS appointment with her pedi. Wed night Sept 8th.
Every time (at least for the last 4 months) Every time I leave the
office thinking her doctor is an idiot the problem is and he admits it, he just doesn't know all that much about PANDAS.
I am not just saying this.. but I know more about it then he dose.. and he is
too afraid to learn.. He knows enough about it to treat her with the antibiotics
and he said he now feels safe that she needs to stay on the dosage she is on
for at least a year and we will see where we go from there..

BUT for months he has been telling me that she needs to be pulled out of school
anytime strep is in the building.. but he is telling me I need to make that
happen not him. IOW. he is afraid to put his name on a written paper saying
that. WHY because he is afraid of becoming known as "one of those PANDAS
doctors" So I figured I would get my information on how to handle that from one of the PANDAS doctors online.. grrrrrrrrrr... ticks me off.. because he has been
talking about it for months

He was willing to write me up the paper saying he is treating her for the PANDAS
syndrome and that she will need accommodations from the school in dealing with
this.. but he would not go into details as to what those accommodations should
be... I really wanted his help on this, because how the heck am I to know what is too
much or what is not enough that needs to be done to keep her safe and help her
makes me want to scream.

These are all things he has said to me today.
PANDAS is still very controversial, and I don't know what is true and what is not
with it.
I'm still very sceptical with alot of PANDAS stuff..
I think alot of people are saying there kids with major problems have PANDAS
when there are other major underlining problems..
A Year ago I would have said No I did not believe in PANDAS but Sweet Pea's case
is a clear cut text book case of PANDAS, So now I'm a believer, but I still
think that PANDAS kids have other underlining problems and PANDAS just brings
them to a head and makes them worse.(this is not what most of the research has
shown.. Research has shown that yes there are kids with underlining problem who
get PANDAS and those issues worsen.. but there has been so many study also
showing that perfectly normal children just one day caught strep and out of
nowhere started having a world of problems)

Since he is still sceptical of alot of the PANDAS findings.. He doesn't believe
the Motrin can really help... I can prove him wrong on that one if he lets me..
He told me that when I 1st asked him months ago about what I read about the
Motrin study..
So Anyways today when I was talking to him about all the symptoms Sweet Pea's has
been having over the last two weeks, I also added in like I do to everyone I
talk to that the Motrin lessens if not take the symptoms away (basically pointing
out that while symptoms are never good that it's not totally out of control) He
rolled his eyes and said I still think the Motrin thing works like a placebo
I promise you.. I'm not making this up.. I have seen my child totally out of
sorts with symptoms and with in 30mins to a hour of getting the ibuprofen in her
be totally back to normal... Sure maybe once or twice it could have been a
placebo affect... but every time for the last 4 months the symptoms have gone
away with it's use.. and It's just not my child.. there are 100's and 100's of
PANDAS children using this and it is working to lessen the affect of the
symptoms on them. And you know what at this point in time I don't' even give a
crap if it was a placebo as long as it helps my child not be in pain or act like
she needs to be placed in a padded room.
And so after ticking me off with all that talk.. I asked him about how his
meeting with the doctors at the Children's hospital went.
See last month when he was talking about taking her off the a/b he said that
weekend he was going to a lunch meeting with the children's doctors and he
was going to pick there brain about Sweet Pea's case and how they thought we
should treat her and go about it all.

He looked at me sort of with a worried look on his face. and said Well like I
said, PANDAS isn't easily accepted and I was afraid to bring it up at the
lunch. There is no faster way to start a fight amongst doctor then to start
talking PANDAS, I just didn't know how to bring up that I was treating a PANDAS
case without starting a fight and last year I would have been arguing the
other side of the issue and I don't know enough about it to really support it so
I just didn't talk about it..

I guess I should be glad he is honest enough to tell me that, but I'm still sort
of feeling ticked(as you can tell from my vent here) that I really do not have a
doctor to go to who knows what the heck they are doing.. but as the doctor
pointed out most doctors know nothing about this and they all are learning... I
just don't feel like he is willing to learn all he needs to know to be treating
a case of PANDAS. like he is too chicken to admit it to other doctors that it
is real and he has now seen it with his own eyes..


So in the mean time I have an email out to Dr K. who is a known PANDAS doctor, only like 6 hours away from us. I emailed him Sweet Pea's story and told him her treatment as of now and my issues with her doctor(though not in a venting form like this.. I was nice LOL) and I'm hoping to hear a response from him. I have been told by other parents of PANDAS children that he is the best and that he will respond.. So now I wait and see. I just asked him what he thought I should be doing, if there was anything he thinks needs to be done that wasn't, just basically asking his opinion on Sweet Pea's case.
Anyways that is where we are with that.

She is still having symptoms everyday not just one symptom over and over.. but different symptoms at different times just out of the blue and random. But she is not in any major pain from it so that is a good thing, but symptoms are always a bad thing no matter what symptom it is or how mild it is.. :-(

1 comment:

  1. I would call other drs in Norwalk and Sandusky. Get a dr who is willing to learn about it and talk about it. SERIOUSLY!!! Call me if you want cause I have a couple I could recommend at least calling to make a visit with.