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Pandas success stories? Is your child free or symptoms now?

 
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amother




OP
 

Post Mon, Oct 18 2021, 2:01 pm
Chuzzik needed. Very worried. Just heard back from Doctor that my daughters labs highly suggest pandas. ( Very high mycoplasma, high strep and high antidnase, no current or recent known strep infections) Symptoms and behaviors are consistent with diagnosis. We will begin his recommendations bit Im Just so worried since I've heard that their is 'no cure'
Any success stories out there please? Details of your story and what helped also appreciated very much.
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amother




Mintcream
 

Post Mon, Oct 18 2021, 2:02 pm
Yes
Worked for my son
Three weeks zithromax for micoplasma
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amother




Seashell
 

Post Mon, Oct 18 2021, 3:15 pm
OP there’s hope. If you caught it early and treat aggressively there is a good chance of remission. Even if not, with the proper treatment you can make good gains. It’s not an easy road with clear cut answers, but it’s doable, and it’s possible. We’re going at this for 5 years and I finally feel like there’s a light at the end of the tunnel.
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amother




OP
 

Post Mon, Oct 18 2021, 7:57 pm
Thank you so much. The doctor made it seem like her blood work was very concerning with significant elevated levels. I am.so overwhelmed and upset. Anyone else can give me some positive stories? TIA
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amother




Papayawhip
 

Post Mon, Oct 18 2021, 8:02 pm
Not my child, but my siblings, antibiotics for a few weeks and it's been a few years and no symptoms or issues since.
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amother




Snowflake
 

Post Mon, Oct 18 2021, 8:30 pm
My daughter had developed out of the blue tic amd anxiety, took 2-2 week courses of azythromycin and Bh doing great.
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amother




Seashell
 

Post Mon, Oct 18 2021, 8:32 pm
amother [ OP ] wrote:
Thank you so much. The doctor made it seem like her blood work was very concerning with significant elevated levels. I am.so overwhelmed and upset. Anyone else can give me some positive stories? TIA
Its good that your dr is concerned and taking this seriously. That means they will help you with treatment. Too many drs blow all this off. I would also advise that as a parent you learn as much as you could about this illness. From this thread it seems quite a few people get better with a couple of rounds of antibiotics, but a lot of kids need more than that and they need a parent to advocate for them.
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amother




Obsidian
 

Post Mon, Oct 18 2021, 8:33 pm
My ds was on antibiotics for almost six months. Doing well now bh. It's been 9 months since last dosage. So I'm always keeping an eye...
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amother




Lightcoral
 

Post Mon, Oct 18 2021, 8:46 pm
If I remember correctly, dd was on antibiotics for 3 months bh doing great
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amother




Offwhite
 

Post Mon, Oct 18 2021, 10:17 pm
DS was on antibiotics (mostly augmentin) for 10 months, off for about a year, back on for about 5 months. Then we took his tonsils out a few months ago. Doing great since then BH!!!! Bli ayin hora!!!! He's a more content kid than he was even when he was "just fine" on augmentin.
(hate expressing it, since I'm so afraid of ayin hora, but I want to give you chizzuk that it'll all be good IY"H)
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amother




Amaranthus
 

Post Mon, Oct 18 2021, 10:33 pm
Our daughter had Pandas (main symptom was OCD behaviors). We were worried out of our minds. Bh she responded to Zithromax (manufactured by sandoz). She stayed on for the better part of a year I think, and then weaned off super slowly. She did have symptoms reappear about a year or two later and we again did the Zithromax which she responded well to again. We always keep an eye out and over the years, we have noticed certain OCD behaviors popping up every so often and then fading with time without meds…. Hatzlacha rabba- We always say that it’s such a bracha that we knew about pandas and we were able to recognize that that’s what it was and treat it appropriately. Bh!

Iyh your journey with this should be quick and easy. Refuah shelaima!!
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amother




OP
 

Post Mon, Oct 18 2021, 11:57 pm
Thank you so much, Amen!! This is very encouraging to hear.
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chams




 
 
 
 

Post Tue, Oct 19 2021, 1:53 am
Same lab results but unfortunately didn't have a doctor by us willing to believe in pandas and do the right testing and it was covid time so didn't get the right treatment right away so ocd became much worse. They kept saying it was just strep and trying one antibiotic after another. I finally found a different doctor who agreed to do further lab work and found microplama, which was canceling out all the antibiotics they were trying.
Then with the right diagnoses and antibiotics (zithromicyn) for a year the ocd went away. Once we were getting better we also did intensive exposure therapy which helped move it along quicker. With hashem's help your child's was caught early, and should only need the right antibiotics. The only thing we are dealing with now is flares when she is exposed to kids in school with covid and strep. But these flares are no where near as bad and she recovers from them better.
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amother




Arcticblue
 

Post Tue, Oct 19 2021, 11:24 pm
chams wrote:
Same lab results but unfortunately didn't have a doctor by us willing to believe in pandas and do the right testing and it was covid time so didn't get the right treatment right away so ocd became much worse. They kept saying it was just strep and trying one antibiotic after another. I finally found a different doctor who agreed to do further lab work and found microplama, which was canceling out all the antibiotics they were trying.
Then with the right diagnoses and antibiotics (zithromicyn) for a year the ocd went away. Once we were getting better we also did intensive exposure therapy which helped move it along quicker. With hashem's help your child's was caught early, and should only need the right antibiotics. The only thing we are dealing with now is flares when she is exposed to kids in school with covid and strep. But these flares are no where near as bad and she recovers from them better.

I have a child that has been suffering for years and years with recurring strep. Antibiotics barely work by now. Do you think something like mircoplasma could play a role here?
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chams




 
 
 
 

Post Wed, Oct 20 2021, 12:13 am
possibly. It was for my daughter. Some children its also mold or Lyme and much more. I just couldn't keep trying one antibiotic after the other and getting no where. And each antibiotic was a month trial. so it dragged out and so I researched alot and came across mycoplasma cancelling out most antibiotics. You have to explore all options
basic blood work to start with is
IGE, IGA, IGM - 1,2,3,4 CBC ANA Ferritin B12 Vitd antidnase,
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amother




OP
 

Post Wed, Oct 20 2021, 12:24 am
chams wrote:
possibly. It was for my daughter. Some children its also mold or Lyme and much more. I just couldn't keep trying one antibiotic after the other and getting no where. And each antibiotic was a month trial. so it dragged out and so I researched alot and came across mycoplasma cancelling out most antibiotics. You have to explore all options
basic blood work to start with is
IGE, IGA, IGM - 1,2,3,4 CBC ANA Ferritin B12 Vitd antidnase,


Thank you. Was it Zithromyzin that helped your child in the end with mycoplasma? Isn't that an antibiotic? What does it mean that mycoplasma cancels out antibiotics? What antibiotic does to cancel? My daughter has mycoplasma so trying to understand before her doctor appt next week. Thank you so much for your help!!
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chams




 
 
 
 

Post Wed, Oct 20 2021, 1:02 am
yes but my dd needed to take it for a long time as she had very high numbers and it was left so long.
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amother




Orange
 

Post Wed, Oct 20 2021, 7:34 am
amother [ Arcticblue ] wrote:
I have a child that has been suffering for years and years with recurring strep. Antibiotics barely work by now. Do you think something like mircoplasma could play a role here?


Mycoplasma is a genus of bacteria that lack a cell wall around their cell membranes. This characteristic makes them naturally resistant to antibiotics that target cell wall synthesis (like the beta-lactam antibiotics). They can be parasitic or saprotrophic.

It's a diagnosis. And a clue to why the antibiotics isn't working. Which is why only specific antibiotics can work. Even the brand name of the antibiotics makes a difference.
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amother




Obsidian
 

Post Wed, Oct 20 2021, 7:47 am
amother [ Arcticblue ] wrote:
I have a child that has been suffering for years and years with recurring strep. Antibiotics barely work by now. Do you think something like mircoplasma could play a role here?


Did you ever go to an ENT to check tonsils and adenoids? Sometimes they are so big the bacteria hides there and child keeps getting reinfected.
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