Doug
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Posts posted by Doug
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I am happy that it is in the paper but not to happy about the end of it saying that the kids should take prozac and get therapy?? nothing about abx's for a treatment??
I dont get it..
Tracie
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Doug, you mentioned this in the "unexpected turn of events" post:
"Also tell your Doc that PANDAS has just got into the journal of Pediatrics
for info on it."
Do you have a link for that article.
Did I miss that somewhere along the line here? I just tried searching but was unsuccessful....could be me
Thanks
Kara
Hi Kara sorry I did not see your post but I think you found it is on the pandasnetwork.org that is also a awesome place for info also.. thanks Tracie
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Also tell your Doc that PANDAS has just got into the journal of Pediatrics
for info on it.
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This Forum WILL be your Doctor
It has helped everyone that has been on here
including us.
There is a list of Doc's that are PANDAS Doc's
on here I think at the top, find one and call them
Dont mess around with a Doc that dont know anything about
PANDAS it is just waisting time.
We have been to Dr.k twice but I know therre are alot more now
who are all doing what they can for our kids
I am sorry..
Just remember that he CANNOT control this... my Daughter started when she was 4
she is now 7 and as for now her PANDAS is gone
Tracie
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Hello everyone
I have not been on here for a while
but we are on IvIg # 2 from Dr.k and all is going good so far
we had it in Feb
Anyway I just wanted to let you all know that we took our DD out of first grade
this year and I am home schooling her and I am doing the k-12 program and it is
very easy to follow if anyone was wanting to go that direction.
I am
so very calm as far as school goes because I dont need to explane to anyone about
PANDAS !!
she has a few kids that she can play with after school that understand that if they are sick
that they cant be around her so that is nice..
We will see what happens next year.
Tracie
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We have never been able to cut down the dose without relapse.
So what abx are you giving and how much?
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Hello Everyone, Lauren is now 7yrs old and is 4 1/2 months post second IVIG, she has been doing great, until 3 weeks ago, we think it was a loose baby tooth and a new tooth coming in. We have been giving her a 250mg Azithromycin every other day " She weighs just 43 lbs " She started having mild seperation anxiety and and worries. We started daily Azith and it calmed down we did this for 10 days, then it came back so we did this again for 14 days and it went away. Now we stopped and went back to every other day and once again it appears to be coming back. We doubled based on Dr. K's advice. I am wondering if we need to keep her on a full dose for longer or a different antibiotic? Does anyone have any thoughts.
Take Care, Doug Patrick
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Our BCBS has paid both time for my dd ivig with Dr.k
but only for that,they dont pay for him as the Doc
because he is out of network,but some money is way better than none
for sure.
all the rest we us on our taxes,hotel,food,flight tickets and rental car.
Hope all is going good for your son.
Tracie
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It is nice to read a happy post!!
I don't think we can ever give up hope
because the hope IS out there for our kids
we all just need to find what works.
Take care
Tracie
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((hugs))
Thank you..
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Tracie,
I am so sorry. You recent PMs to me were so positive. Prayers and hugs and health to you!
Mary
from Michigan
Thank you Mary..
the weird thing is that she is NOT sick???? at all
It might be her loose front tooth that is the only thing we can think of
but it is so off and on.. right now as I am sitting here on the computer she is down at the neighbors house catching bugs...
she could care less about where I am.. so that is good we will just need to watch and see
I am giving her 250 mg of azith everyday for 10 days per Dr.K
then we will see.
I hope your Mary is doing ok.
Tracie
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Oh Tracie-
I am SO with you. We have been in a "bump" since January
I am trying so hard to stay positive, but it does wear you down.
Just remember, you have gotten her well before, you can do it again.
Hang in there!
Eileen
Thank you.. we are on our second ivig..
I know it works... and she is doing so much better
but it's the little things that freek us out
she say's it's not PANDAS.. but I think she would say that
because she dont want to have ivig done again...
but she would know if it was PANDAS again..
I pray I pray for all of us..
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Please God let this just be a bump!!!!
We cant handle anymore....
Tracie
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OMG Have a good day!!!I think we would ALL love to have that day by the pool...
ENJOY IT
Tracie
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I've been trying to understand biofilms - the slime that forms around colonies of bacteria. It's a big issue in lyme because once bacteria forms a biofilm, you can hit it with 1,000 times a normal dose of abx and not make a dent. I found this link and though some of my geek Pandas friends might find it interesting. It's VERY long. But toward the middle, it starts to talk about how pulsing antibiotics, rather than taking lots and lots every day, can erode away a biofilm. For anyone who may be struggling with any chronic infection, some good info...
WOW what a great link My DH will love reading this... I even read most of it..
We have has 2 HD of ivig with Dr.K and we are on azith 250 every other day for a year
would that be pulsing??
I know it all started with her ears.....
she had so many ear infections...Tracie
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When my dd started with the food OCD we would just feed her what she wanted...
and most of the time it was junk.. But she was eatingI bought her some pediatric protein drinks
chocolate... she would drink them all down without a problem...
someday's that would be all she would drink/eat..
IVIG has helped all of that for her.
I am sorry I hope he feels better soon...
Tracie
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LOVE IT !!!!!!!! it is a nice feeling
I think we all learn to do the happy dance
with the good day's
and try to keep it in check with the bad day's...
So today DO THE HAPPY DANCE !!
Tracie
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Our pediatrician has always pushed honey for coughs...and it works!
Yep honey works... not all night but long enough for my dd to get to sleep
and I agree with you I thought my dd just had a BIG TIME sweet tooth
but mabey her body is on to something.. I just make sure she brushes her teeth
more.. I am not worried about her weight because she weighs nothing as it is..
( I wish that was me
my dd will do anything for Chocolate.....
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my PANDAS kid passed out in the office after receiving these vaccines. A week later, massive stomach cramps, fever, diarreha, and the beginning of a downward mental spiral that has not returned to previous baseline 3 years later. I believe it was the overload on the system. If i could take it back, I would have never done it. I have felt guilty, angry etc.. My Youngest, nonPANDAS, was due for these vaccines this year. We discussed each indivdually, and found no reason to administer them. The risks of the vaccine seemed to outweigh the chances of him actually contracting these diseases at this time. We will revisit meningitis when he goes to college, as that seems to be the highest risk environment for this disease.
I did the same thing with her shots.. she hates them so bad so her doc said well we can combind them and just get it all done with.. I wish I could take that back also.. but I was thinking about my dd.. But I think she was already starting PANDAS but I can't remember because we did not know at the time about PANDAS..
Tracie
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Yep...
my dd 6 was ocd about dying
so she would always ask how old is to old
when birthdays came around for anybody..
she has started to mellow on that
we had ivig # 2 in Feb and she is doing
great.
Tracie
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Find a PANDAS doc
don't mess around with local Doc's if they don't believe you
you will just waist time and money we went to dr.k also
he does ivig and knows what he is doing. Dr.T is very smart and will tell you what tests to run,and he will get you on the abx's but I dont think he does IVIG
I have read that dr.B is also good
get ALL the blood tests done even the one for lymne.. you just never know
stay strong
Tracie
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My dd has NEVER tested + for strep..
They think it started with all of her ear infections when she was little
Tracie
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Find a good P.A.N.D.A.S doc.. we go to Dr.k
dont mess around with local docs that dont know anything
about pandas you will just waste time and money.
Tracie
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Hi Everyone,
I am wondering if anyone can advise me on the steroid burst and its side effects and what to expect. We are planning on doing the IVIG next month and the doctor recommended steroid burst to confirm diagnosis of PANDAS and to alleviate symptoms. I am very new to this, as my son was only diagnosed 10 days ago so any info. would be appreciated.
Also, Tracie, thank you so much for your post. It was VERY helpful! I would like to call you this week if that is okay.
Sharon
Oh yes call anytime:)
The steroid burst just helps to settle things down
It made my dd very hypper that was about it
now after ivig he will give you a rx for a steroid
to help the stuff that comes with the day 2..
Tracie
I think I may give up
in PANS / PANDAS (Lyme included)
Posted
We go to Dr.k he is also a very good PANDAS doc.
at least I think so..
Tracie