Tracie
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Posts posted by Tracie
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Hi Jill how did you know she was high on yeast? is it just a test or is there signs?
My dd has been in zith for about 3 years but she seems to be ok with it..
I hope it will be ok for her.
and hope your IVIG goes well
Tracie
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My DD has this also
It is all part of PANDAS
my dd will toss up her food
because she eats to fast or has to burp
and then she will have a hard time eating
for about a week or so
Do you have a PANDAS doc?
see if you can up the abx's
or try a different kind
have you had IVIG?
It has worked wonders for my dd
we have had to do it twice
and I would do it again if we had to.
Tracie
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Thank you Nancy
I think I will hold off my DD still needs to be on
her abx's
How is you DS at 14? does he still show signs of PANDAS
at his age?
Well this time last year we were with Dr.K and tonight I am sitting here on my couch a very happy mom!!
our dd is doing very good also.. she still has a bit of anxiety whith getting sick or if something is a little out of norm
but other than that it's all good
I homeschooled her this year and I think that helped alot we are thinking about school next year in a smaller class
so that will be our true test for sure..
I pray that this time next year I will be still sitting here on my couch still being a very happy mom...
and yes (Knock on wood)
We're good (knock on wood!)! Signs of PANDAS? Honestly, it's a little hard for me to say since he is who he is, and we think his initial bout with PANDAS was actually back at the age of 3, though we didn't get a diagnosis until age 12! So, he's a little "quirky," unique, marches to his own drummer, etc. Whether that's because some of the PANDAS lingers, or if it's because he's developed a way of thinking, coping and behaving as a result of dealing with years of undiagnosed anxiety, I don't know.
Thankfully, though, he's now happy, well-adjusted, in school full time, functional, friendly, excelling academically (still has an IEP for now), sleeping well, handling himself well and with maturity, problem-solving at least at age-level and usually beyond, etc. So, in our eyes, he's past the PANDAS, at least the PANDAS that disabled him and had him homebound two years ago!
Hope your DD is doing well, also!
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Yes my DD always goes into a flair with a loose tooth..
I just up her abx's for 10 days.
But ask your PANDAS doc on what to do for sure
A loose tooth makes all kind of bacteria in the mouth.
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Thank you Nancy
I think I will hold off my DD still needs to be on
her abx's
How is you DS at 14? does he still show signs of PANDAS
at his age?
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Thinking about trying the olive leaf but I am wondering if it would mess up her proabotics that she also takes?
and her abx's..and fish oil.
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Tracie,
What has the year been like? Has she progressively gotten better, or has she been well since #2? I ask because we did IVIG #2 in November and DS is not as well as we would have hoped. Dr. K says wait to see, but it is hard.
Ya it took a little time to get her back to 100%
but not sure how long it took, she had a couple of relaps for sure with her teeth falling out
and a cold but nothing that a up in abx's didn't take care of..
I am sorry that he is not getting better yet..
keep your chin up and keep talking with Dr.K
how old is he? my DD is 7 and she woke up with this at
the age of 4 she had so many ear infections that we lost count
and that is what did it..
she had been sick all the time from the age of 6 months
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Hello everyone,
Well this time last year we with Dr K for my DD IVIG #2
and I am happy to say what a year..
she is doing great,I hate to say it out loud
but I am we are on daily zith and now we are going to go down
to everyother day through the winter,and then a little less in the Summer
If I dont homeschool her next year.. well that will be our
true test for sure..
We are going to put her into some sports in the Spring and Summer and see how she does
So for now we have it under control..
Tracie
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I wish my husband and I could go...
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So glad to hear she is doing well. How did you get there?
Hello
we have had 2 IVIGs with Dr.k
abx everyday of 250 of azith
and we kept her home for school
and kept her away from as many people and kids that were sick..
It has been a VERY hard year BUT it will be 1 year post ivig #2 without any big time
PANDAS flair ups on the 10th
nothing that abx's could not handle..
so we will still do this through the winter
and then we will see what happens
I pray that it will all work out..
I think PANDAS will always be in our lives
but maybe not as much or at all..
I hate to say all of this out loud
because I dont want it to come back and bite me..
Tracie
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I haven't been on here for a while
until last week or so..
but I now know why I have checked in
because I can come here and VENT !!
I have lost frends,family,and jobs because of
PANDAS..
BUT it is all for my DD
who is doing great
There is hope
and alot of stress along the way
Hang in there everyone
Tracie
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I HATE HATE HATE !!!! myself for getting her most of her vacs at the same time
she HATED going to the Doc so much for her shots that I thought I would doing her a favor
by getting them all at the same time her ped said oh we do it all the time...
STUPID!!!!
Tracie
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So has anyone thought about what people are going to think about PANDAS being contagious?
or is that just me being stupid??
I have enough problems teaching people what PANDAS is..
Tracie
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AWESOME
If the parents dont jump on this
and it's all free???
I wish all of my dd PANDAS tests were free!!!
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We have been to Dr K in Chicago for 2 IVIG'S for my DD she is 7 and we started at age 4
We really like him
If you need any info just let me know
Hang in there with the RIGHT docs you can get
some help for your son..
There is so much info on this
and we can ALL help you get help for your son.
Tracie
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I have learned to be thankful for what I have each and every minute because we all know - we can awaken on any given morning and our children can be "gone" again, with no rhyme or reason. Thank you for this post that I have been reading while my son watches "Chicken Run" on my bed. He says his feet are cold. I will go now, and warm them up and hold him close, all night - yes - another thing I am thankful for - not really giving a flying fig anymore what people think and not following the advice of pediatricians regarding separation with a 5 year old. He can sleep with me if it makes him feel safe.
Love and blessings and many, many good things for you all! 2012 will be our year. Keep fighting the good fight!
Thank you Arial.
Kath
My 7 year old dd has been sleeping with me for almost 3 years
If she is happy I am happy
She will break her habit when she feels ok about it..
So I dont listen to the Pediatricians any more..
Tracie
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I understand it all!!
After 3 years of PANDAS with my DD
I am getting MYSELF back in gear..
going to the boob smasher today I havent been there for
3 years.. Wish me luck and pray that life dont toss me
a different curve ball!!
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I need one in COLO A ped Doc would be nice
and one who knows that my dd WILL need to be on
long term abxs.. We have had IVIG twice already and doing
great now.. but she or we need a doc that I can count on..
She has seen Tom Smith the first time and he was so much money that it was cheeper for us to fly and stay in Chicago to see a REAL PANDAS doc..
I have seen the list on the saving sammy web
but I want to see if anyone has updated it..
Thanks,
Tracie
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Yep the same thing here for my dd 7
last year but I just let her go because it is her brain
telling her to go.. but most of the time she just had a "thought" that she had to go but she really did not have to go..
but we were already going back to Dr.k for IVIG #2 anyway and within about 1 day the bathroom problem was GONE..
It was driving me crazy also but then I just let it go because it was stressing her out even more..
Tracie
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I am so glad that it went great for you
My dd she is 7 has had ivig twice with Dr.k we THINK HOPE AND PRAY that we are on the right track
BUT I am homeschooling her this year because we think that is why she failed the first ivig..
and I am so glad that I am she is not very happy about it BUT she also knows that as much as she loves Dr.k she never wants to see him again
So we have 9 months under our belt and holding our breath eveyday
I wish we could had been in the IVIG study..
Where do they do it at?
anyway keep us posted..
Tracie
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Yes !!!! my dd who is 7 always has a flair when she is loosing her baby teeth your son needs to have the dentest put him on abxs and he needs to take them until he settles down we do 14 days at least.
Good luck on finding a local PANDAS doc
If they dont know about PANDAS they are not going to give you abx
Have you talk to any of the PANDAS Dr.? Dr.k or Dr B??
good luck
Tracie
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I have seen posts on this forum about symptom flares effect by teeth. I need advice, opinions, experiences and don't know who to ask. My PANDAS/Lyme 8YO son had symptoms skyrocket on Saturday night. We didn't realize until Sunday that he had lost a filling in his tooth. This is the only thing that we can think of that has caused the flare.
We took him to the dentist today and they said that they recommend either a root canal or an extraction (it is a baby tooth) as there is an additional cavity in the tooth and it is close to the nerve. They are concerned that drilling and filling may not fix it until it comes out on it's own in 3-4 years. They are concerned that it can become worse, get infected, and have to get pulled anyway.
So, my concern is that if they are messing with a tooth nerve and there are risks with any choice and chances of infection, what would be the best way to go for a sick child. Our dentist recommended extraction, but he then referred us to a pediatric dentist as he did not know how to handle or consider the PANDAS effects. Is there anything that I should share with the pediatric dentist that will aid in our decision or anything that he needs to know?
We are actively seeing a LLMD - on antibiotics, but haven't found a local PANDAS doctor to work with on day to day questions/problems like this.
Thanks to everyone for any advice!
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I am home schooling my 7 year old this year and I love it.. her not so much but she knows that she is away from all of the kids that are making her sick and she has learned so much this year because of the fact is that everytime she has started school she got sick and then she went into PANDAS and then we would start ALL over again.. I hope to put her back into school next year.
I have her in a program it is called cova k12 and it is also through her school district so if it dont work out for her next year I can just go through the school.
So I would talk to the public school to see if they have a home school program
It takes sometime to get a program worked out but once you into the swing of things
it works out.
I also work part time
I hope this helped
Tracie
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Hello
I need a new PANDAS Doctor in Colorado
mine is starting to get all whatever about her and the ABXS
I have Dr.K but it is just alot easer to see a Doc here
and get her the abx without a big hassle..
1 year post # 2 IVIG
in PANS / PANDAS (Lyme included)
Posted
Hello..
Well her first symptoms were she was just afraid of everything
and being away from me
huge seperation anx..
and she would shake her hand
we got on abx's and they did help but we did ivig and it went away
for about 9 months
She got sick again and it all started again
so we went back for ivig again and we have been good for a year with abx's
so we just hold our breath everyday