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PANDAS HELP!!
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amother




OP
 

Post  Thu, Aug 06 2020, 6:36 pm
amother [ Cerise ] wrote:
yes absolutely. Removing gluten, dairy, corn and soy from the kids diet very often has a remarkable effect on their sensory system. As does improving gut health.

I have already tried to remove these foods but was was largely unsuccessful. In general, I’m quite health conscious when it comes to food, but this particular child looooves gluten, corn related foods, pasta, dairy. He gets very aggressive when he doesn’t get ‘his’ foods.
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amother




Cerise
 

Post  Thu, Aug 06 2020, 6:59 pm
amother [ OP ] wrote:
I have already tried to remove these foods but was was largely unsuccessful. In general, I’m quite health conscious when it comes to food, but this particular child looooves gluten, corn related foods, pasta, dairy. He gets very aggressive when he doesn’t get ‘his’ foods.
thats a sure sign he’s addicted to these foods Sad and they are causing an opiate effect in his brain, leading to sensory dysfunction and otherwise contributing to his symptoms and keeping him coming back to them for his fix. It’s an awful cycle to be caught up in, not unlike drug addiction Sad there will definitely be some withdrawal when you decide to remove them, but it will get better after a couple of days. And then MUCH better after that Smile best is if the whole house could do the diet together with him. It’s healthier for everyone that way anyways.
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amother




OP
 

Post  Thu, Aug 06 2020, 9:47 pm
amother [ Cerise ] wrote:
thats a sure sign he’s addicted to these foods Sad and they are causing an opiate effect in his brain, leading to sensory dysfunction and otherwise contributing to his symptoms and keeping him coming back to them for his fix. It’s an awful cycle to be caught up in, not unlike drug addiction Sad there will definitely be some withdrawal when you decide to remove them, but it will get better after a couple of days. And then MUCH better after that Smile best is if the whole house could do the diet together with him. It’s healthier for everyone that way anyways.

Sad part is that it’s extremely hard to control their food choices in school. Been down that path..
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amother




OP
 

Post  Thu, Aug 06 2020, 9:52 pm
I’m reading all the responses and am grateful for each and every one of them. To be honest though, I’m so overwhelmed by all the surrounding issues that I just aim to survive one day at a time. Where do I summon the time and energy between work and other children to begin doing anything. This feels like a full time job.
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amother




Cerise
 

Post  Thu, Aug 06 2020, 10:01 pm
amother [ OP ] wrote:
Sad part is that it’s extremely hard to control their food choices in school. Been down that path..
yes. It is incredibly difficult. We struggle with that too. One of our biggest struggles in fact. I get you all around.
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amother




Linen
 

Post  Thu, Aug 06 2020, 10:43 pm
Pandas parenting is a full time job. For those saying go off all foods etc.
A lot of kids with pandas have severe food aversion to the point of anorexia. They will literally starve rather then rather than eat something they don't like.
They feel sometimes as nauseous (caused by brain inflammation (think how nauseous u get with severe migraine) as a pregnant woman.
I did not feel it right to take away foods from their diets. (Same way we wouldn't tell a pregnant woman who is vomiting, to eat chicken for breakfast etc...u eat what u cam manage to keep down).
So OP, don't feel guilty if diet change isn't manageable or working.
There are other ways to get healing.
Also as an FYI, many many meds and supplements can exacerbate symptoms in these kids (including probiotics, vitamin d, vitamin c, antihistamines, and lots more that I tried and made my kids behavior and psychosis go from.bad to worse).
Anything you try, ONE thing at a time for a week or more to see if it helps or makes worse.
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amother




OP
 

Post  Thu, Aug 06 2020, 11:08 pm
amother [ Linen ] wrote:
Also as an FYI, many many meds and supplements can exacerbate symptoms in these kids (including probiotics, vitamin d, vitamin c, antihistamines, and lots more that I tried and made my kids behavior and psychosis go from.bad to worse).
Anything you try, ONE thing at a time for a week or more to see if it helps or makes worse.
[b]
OMG some things are beginning to make so much sense. This child displays extreme psychotic behavior every time I try to give natural supplements. I never understood why. What can I do for brain inflammation? Gut health?
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amother




Cerise
 

Post  Thu, Aug 06 2020, 11:57 pm
amother [ OP ] wrote:
I’m reading all the responses and am grateful for each and every one of them. To be honest though, I’m so overwhelmed by all the surrounding issues that I just aim to survive one day at a time. Where do I summon the time and energy between work and other children to begin doing anything. This feels like a full time job.
just getting your child on antibiotics and Motrin will make a big difference to your daily life.
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amother




Cerise
 

Post  Thu, Aug 06 2020, 11:58 pm
amother [ OP ] wrote:
[b]
OMG some things are beginning to make so much sense. This child displays extreme psychotic behavior every time I try to give natural supplements. I never understood why. What can I do for brain inflammation? Gut health?
when I tried a protocol someone gave me without understanding why it made everything worse.once I started learning and understanding, I was able to put together protocols that worked for us.
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amother




Firebrick
 

Post  Fri, Aug 07 2020, 3:18 am
can someone explain mycoplasma please. my son is also a pandas/lyme patient. he also has high mycoplasma. what does that mean? tia!
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amother




Cerise
 

Post  Fri, Aug 07 2020, 7:55 am
amother [ Firebrick ] wrote:
can someone explain mycoplasma please. my son is also a pandas/lyme patient. he also has high mycoplasma. what does that mean? tia!
mycoplasma as an acute infection looks like a bad cough or walking pneumonia. It is bacterial and treated with abx. Oftentimes tho, it presents asymptomatically, or doesn’t get treated because looks like a cough, and turns into a chronic infection. In children with pandas and Lyme, this chronic subclinical infection could contribute to neuroinflammation and become a trigger. If someone has elevated myco titers, most drs will just say it means a past infection. But in the pandas/Lyme/chronic illness/functional medicine world, it almost always means chronic subclinical infection that needs to be treated with long term abx, or herbal equivalent.
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amother




Firebrick
 

Post  Fri, Aug 07 2020, 6:47 pm
amother [ Cerise ] wrote:
mycoplasma as an acute infection looks like a bad cough or walking pneumonia. It is bacterial and treated with abx. Oftentimes tho, it presents asymptomatically, or doesn’t get treated because looks like a cough, and turns into a chronic infection. In children with pandas and Lyme, this chronic subclinical infection could contribute to neuroinflammation and become a trigger. If someone has elevated myco titers, most drs will just say it means a past infection. But in the pandas/Lyme/chronic illness/functional medicine world, it almost always means chronic subclinical infection that needs to be treated with long term abx, or herbal equivalent.


Thank you! that was so helpful! his mycoplasma ct was 517 for IgG. He did have a bad cough almost 1 year ago. he was treated with antibiotics. would a normal round of antibiotics be enough or a pandas/pans kid would normally need more? both drs (pediatrician and functional meds dr) mentioned that this could have been from that cough or maybe something else. Maybe the plan should be to retest his mycoplasma after a while to see if it's still high (I'll ask his dr)- is it known how long the IgG antibodies stick around though if there is NO chronic subclinical infection?

Would doxy work for that? or would zythro antibiotics? or another antibiotics entirely?
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amother




Cerise
 

Post  Fri, Aug 07 2020, 6:55 pm
amother [ Firebrick ] wrote:
Thank you! that was so helpful! his mycoplasma ct was 517 for IgG. He did have a bad cough almost 1 year ago. he was treated with antibiotics. would a normal round of antibiotics be enough or a pandas/pans kid would normally need more? both drs (pediatrician and functional meds dr) mentioned that this could have been from that cough or maybe something else. Maybe the plan should be to retest his mycoplasma after a while to see if it's still high (I'll ask his dr)- is it known how long the IgG antibodies stick around though if there is NO chronic subclinical infection?

Would doxy work for that? or would zythro antibiotics? or another antibiotics entirely?
a regular round of antibiotics is often not enough to knock the infection out, it is very antibiotic resistant and good at evading the immune system. Tracking the trend is a good idea, it’s always nice to see if titers are trending downward, but in the absence of a clear trend I think in the case of a kid with pandas and Lyme it’s pretty safe to assume the myco is somehow contributing. I don’t know which antibiotics are generally used for chronic myco. Some ppl find the myco will keep coming back until Lyme and co are under control. There is also a herbal product that a lot of people have used successfully for chronic myco, here is a link https://www.raintree.com/myco-.....D_BwE
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amother




Firebrick
 

Post  Fri, Aug 07 2020, 7:04 pm
amother [ Cerise ] wrote:
a regular round of antibiotics is often not enough to knock the infection out, it is very antibiotic resistant and good at evading the immune system. Tracking the trend is a good idea, it’s always nice to see if titers are trending downward, but in the absence of a clear trend I think in the case of a kid with pandas and Lyme it’s pretty safe to assume the myco is somehow contributing. I don’t know which antibiotics are generally used for chronic myco. Some ppl find the myco will keep coming back until Lyme and co are under control. There is also a herbal product that a lot of people have used successfully for chronic myco, here is a link https://www.raintree.com/myco-.....D_BwE


thanks so much! I'll be discussing at my next dr apt
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amother




OP
 

Post  Fri, Aug 07 2020, 7:17 pm
amother [ Firebrick ] wrote:
thanks so much! I'll be discussing at my next dr apt

Who is your doctor?
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amother




Firebrick
 

Post  Fri, Aug 07 2020, 7:29 pm
I dont want to post on here, she only practices in my state (not NY) what state are you in?
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FranticFrummie




 
 
 
 

Post  Sat, Aug 08 2020, 1:59 pm
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.
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amother




Cerise
 

Post  Sat, Aug 08 2020, 10:30 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.
because it’s not a first line of treatment and it’s also a gamble. The evidence is very very mixed on its efficacy in pandas, some see amazing results like you, some see no change but now they are minus an important organ, and some see worsening. Strep isn’t the only pathogen involved in pandas, and it can also colonize any organ in the body anywhere. Removing tonsils will remove one place for them to hide, but sometimes it just moves elsewhere. And if the body hasn’t learned not to react to strep like that, it can keep doing it. It is definitely part of the conversation at some point for most pandas at some point in treatment, but it’s not a given.
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amother




OP
 

Post  Sat, Aug 08 2020, 11:31 pm
amother [ Firebrick ] wrote:
I dont want to post on here, she only practices in my state (not NY) what state are you in?

I’m in NY. My pediatrician is really not on board. He did point it out to me but does not want to pursue treating it:(
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amother




OP
 

Post  Sat, Aug 08 2020, 11:35 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.

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.
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