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PANDAS HELP!!
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amother




Cerise
 

Post  Sun, Aug 09 2020, 2:06 pm
amother [ OP ] wrote:
I don’t think that would help with Mycoplasma. I
May be mistaken though.
Anyone heard of strep colonizing in the nose?? Doc mentioned it.
strep can colonize anywhere. Was he talking about marcons type stuff? Sinus scraping?
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amother




OP
 

Post  Sun, Aug 09 2020, 3:05 pm
amother [ Cerise ] wrote:
strep can colonize anywhere. Was he talking about marcons type stuff? Sinus scraping?

His theory was that the infection is coming from dc nose.
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amother




Linen
 

Post  Sun, Aug 09 2020, 3:38 pm
FranticFrummie wrote:
Why is it that no one is talking about removing tonsils and adenoids???

I took my DD to a top ENT at the University of Washington. He told me that strep can "hide" in tonsils, and that antibiotics don't cross into tonsil tissue, just like some medications do not cross the blood/brain barrier.

Tonsils are a little island of paradise for strep. The bacteria can wait it out as long as it needs to, and as soon as the antibiotics are out of your child's system, they can come back with a vengeance. Probably stronger than ever, because the weak bacteria all got killed off, and now you are dealing with superbugs. The only way to really get a cure, is to take away their hiding places.

I had DD's tonsils and adenoids out, and within 36 hours the change in her behavior was astounding. I would have not believed it, if I hadn't seen it with my own eyes. She was back to the sweet, sunny, cooperative little girl that I knew she could be.

She never had a single case of strep again after that, even when it was running rampant through the schools, and parents kept sending their sick kids in.


Also, you've posted in the past about ur daughters mental health issues. For us pandas parents, we would definitely be attributing those tendencies to untreated strep or infections (even if tonsils were already taken out). Getting tonsils out can for sure help with recurring strep but doesn't necessarily stop the immune response causing the neurological symptoms (which can result from strep elsewhere in the body, lyme or any virus etc.)
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amother




Cerise
 

Post  Sun, Aug 09 2020, 5:46 pm
amother [ Linen ] wrote:
Also, you've posted in the past about ur daughters mental health issues. For us pandas parents, we would definitely be attributing those tendencies to untreated strep or infections (even if tonsils were already taken out). Getting tonsils out can for sure help with recurring strep but doesn't necessarily stop the immune response causing the neurological symptoms (which can result from strep elsewhere in the body, lyme or any virus etc.)
agree with this all the way
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amother




Cerise
 

Post  Sun, Aug 09 2020, 5:46 pm
amother [ OP ] wrote:
His theory was that the infection is coming from dc nose.
based on what? And how does it affect treatment?
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amother




Purple
 

Post  Sun, Aug 09 2020, 7:11 pm
amother [ Linen ] wrote:
Also, you've posted in the past about ur daughters mental health issues. For us pandas parents, we would definitely be attributing those tendencies to untreated strep or infections (even if tonsils were already taken out). Getting tonsils out can for sure help with recurring strep but doesn't necessarily stop the immune response causing the neurological symptoms (which can result from strep elsewhere in the body, lyme or any virus etc.)

I'll chime in here and say that when my pandas daughter had her tonsils removed, the flare ups lessened a lot. It's a worthwhile move. My daughter used to have 5 strep infections a year and it spun her pandas wild.
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amother




OP
 

Post  Sun, Aug 09 2020, 7:29 pm
amother [ Cerise ] wrote:
based on what? And how does it affect treatment?

Based on his assumption. He wants to treat it with a nasal spray and Zithromax for 5 days. I don’t wish to pursue treatment with my current pediatrician. Neither does he want to. Any leads will be appreciated.
Just btw DC tonsils and adenoids are not inflamed or enlarged or anything. Dc never has throat pain when strep or Mycoplasma returns. Completely behavioral.
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amother




Cerise
 

Post  Sun, Aug 09 2020, 7:50 pm
amother [ OP ] wrote:
Based on his assumption. He wants to treat it with a nasal spray and Zithromax for 5 days. I don’t wish to pursue treatment with my current pediatrician. Neither does he want to. Any leads will be appreciated.
Just btw DC tonsils and adenoids are not inflamed or enlarged or anything. Dc never has throat pain when strep or Mycoplasma returns. Completely behavioral.
has he been tested for perianal strep? Does he get positive throat swabs?
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amother




OP
 

Post  Mon, Aug 10 2020, 12:55 am
amother [ Cerise ] wrote:
has he been tested for perianal strep? Does he get positive throat swabs?

Dc only gets a positive when we send the swab to the lab. We never tested for perianal strep because my doctor prefers to keep it simple and now after seeing the elevated numbers in the bloodwork, combined with the awful behaviors still says “ Nah 5 days of antibiotics should do it”.
You seem really educated. I’m amazed! How and where can I learn more about this, so I can be my child’s advocate?? I so badly want this nightmare of the past few years to end.
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amother




Cerise
 

Post  Mon, Aug 10 2020, 9:54 am
amother [ OP ] wrote:
Dc only gets a positive when we send the swab to the lab. We never tested for perianal strep because my doctor prefers to keep it simple and now after seeing the elevated numbers in the bloodwork, combined with the awful behaviors still says “ Nah 5 days of antibiotics should do it”.
You seem really educated. I’m amazed! How and where can I learn more about this, so I can be my child’s advocate?? I so badly want this nightmare of the past few years to end.
im sorry your dr is being so unsupportive, and frankly, so uneducated. I’m not sure about the nose colonization, I’m sure it’s a possibility but definitely not the most common one, and 5 days won’t do much of anything... lots of kids find strep in their gut/perianal area. But getting positive throat cultures means it’s in his throat too, even if they are not swollen. Lack of swelling may mean lack of appropriate immune response, as the swelling isn’t caused by the bacteria per se, but rather by the immune system flooding the area with cytokines etc in an attempt to take the infection down. Instead, in your child, all those antibodies and cytokines are being sent to the brain. So this makes me wonder why the insistence on nasal colonization. If you want to learn more you can join pandas parents on FB. Wealth of information and support. I don’t know your dr but do you have a good relationship with them? Do you think there’s a chance you can try to get them on board? There’s treatment information out there geared for physicians that you can share.
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amother




OP
 

Post  Mon, Aug 10 2020, 2:43 pm
amother [ Cerise ] wrote:
im sorry your dr is being so unsupportive, and frankly, so uneducated. I’m not sure about the nose colonization, I’m sure it’s a possibility but definitely not the most common one, and 5 days won’t do much of anything... lots of kids find strep in their gut/perianal area. But getting positive throat cultures means it’s in his throat too, even if they are not swollen. Lack of swelling may mean lack of appropriate immune response, as the swelling isn’t caused by the bacteria per se, but rather by the immune system flooding the area with cytokines etc in an attempt to take the infection down. Instead, in your child, all those antibodies and cytokines are being sent to the brain. So this makes me wonder why the insistence on nasal colonization. If you want to learn more you can join pandas parents on FB. Wealth of information and support. I don’t know your dr but do you have a good relationship with them? Do you think there’s a chance you can try to get them on board? There’s treatment information out there geared for physicians that you can share.

Thank you so much for being a wealth of info for an overwhelmed mom!! I will need to find a new pediatrician to work with me as I find it hard to tell me dr what to do when he’s comoletely not on board. Also, how do u test for perianal strep? Or is bloodwork enough?
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amother




Cerise
 

Post  Mon, Aug 10 2020, 4:34 pm
amother [ OP ] wrote:
Thank you so much for being a wealth of info for an overwhelmed mom!! I will need to find a new pediatrician to work with me as I find it hard to tell me dr what to do when he’s comoletely not on board. Also, how do u test for perianal strep? Or is bloodwork enough?
perianal strep is a swab in the rectum. Though if your kid is getting positive throat cultures, I’m not sure it’s necessary. Even though, it’s good to be thorough and check all possible places if you feel you’re missing something. But the truth is, you don’t need a positive swab anywhere for pandas diagnosis and treatment because it’s a clinical diagnosis. And the titers are enough to tell you he’s fighting chronic strep somewhere... a pediatrician that will work with you is a good idea. We used to see dr Feldman at dr Bulmash’s office, he is pandas literate, in my experience he was very hesitant to give a diagnosis if it wasn’t a textbook, classic case, with sudden overnight onset and very classic obvious ocd and tics, but despite all that he was very willing to draw blood and prescribe longer term antibiotics if we asked for it.
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FranticFrummie




 
 
 
 

Post  Mon, Aug 10 2020, 4:47 pm
amother [ Purple ] wrote:
I'll chime in here and say that when my pandas daughter had her tonsils removed, the flare ups lessened a lot. It's a worthwhile move. My daughter used to have 5 strep infections a year and it spun her pandas wild.


The ENT said that these days they won't even consider taking out tonsils unless the child has had around 5 cases in one year, so that's accurate. They don't just do it on demand anymore, like when I was a kid. "Oh hey, you're 5, time to get those tonsils out!"

I don't think removing tonsils will help with myco or lyme. PANDAS can be pretty straightforward to treat, or it can be extremely complex and take years to eradicate - or anywhere along that spectrum.

I certainly don't think that getting tonsils out is the one and only treatment. I think it's worth it to have a consult with a good ENT who is familiar with PANDAS, and see what they suggest.

In DD's case, he looked into her throat and made this face Surprised . He said in 40 years of practice, he can count on one hand the number of cases he's seen that were as bad as hers. He looked at me and said "How does she even breathe?"

Once they were out, she also stopped snoring, and slept much better. I think they were giving her sleep apnea before, and that would affect her behavior during the day as well, as she was constantly exhausted.

Proper diet, vitamins, and immune boosting are all excellent things for everyone to do, regardless of physical or mental condition. I'm totally on board for mixing alternative and allopathic medicine, too.

I'm so sad that all of your kids are suffering like this. I'm davening that each of you find the shaliach that's right for your particular situation.
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