How to respond

[Amy B]

Hi everyone. I have a quick question. I'm sure you've heard before. When asking the pedx and the neurologist about propolactic antibiotics they tell me that it won't help against viruses. And my ds has pandas reactions to all his illness (cold, flu, etc). Although if he gets strep he will again have the full blown TS. I just need to know how to respond to that question. I've already mentioned that getting strep is too big a risk that I do not wish to take.

 

Also isn't propolactic antibiotics the protocal for pandas? Please tell me if I am wrong. Thanks.

[sf_mom]

Take them the following article!!! Hopefully your Pediatrician and Neurologist are smart enough to understand the information BUT if not change DR.'s. Please challenge their intelligence!

Again, simple to understand comments from Cunningham and Swedo:

However, antibodies are not terribly discriminating and sometimes cannot tell a streptococcus bacterium apart from a healthy cell. In some children, these antibodies pass into the brain and look for something to connect with. In PANDAS, the strep antibodies are unable to discriminate between strep and healthy brain cells. However, the union of strep antibody and neural tissue is not a match made in heaven. Recent research, reported last fall by University of Oklahoma researcher, Madeleine Cunningham, suggests that the antibodies connect with parts of the brain which regulate repetitive behaviors and movement, such as compulsions and tics. According to Dr. Swedo, such autoimmune actions may have the direct result of producing obsessions, compulsions and tics; and in addition, they might indirectly offset the critical balance of brain chemistry which regulates mood and emotion.

Compounding the problem is the durability of strep antibodies. They can remain on the prowl for a hook up weeks after the strep is gone. Subsequent infections or even colds can stimulate the immune system to produce more of the same kind of antibodies which the triggered the original symptoms. PANDAS children can then abruptly re-experience the same symptoms after a symptom-free span of time. Dr. Swedo explained, "We see a saw-toothed pattern of symptoms, extreme outbursts of behaviors for a brief period in response to the infections and then the child may be relatively symptom-free for a period of time."

Edited October 25, 2016 by Administrator
URL has been deleted since it is no longer a valid link

[peglem]

I wouldn't argue with them, just be adamant that the purpose of the prophylactic Abx is to prevent strep. You know Abx does not eradicate viruses, but things would get even worse if he got strep as well.

I don't know if there is an official PANDAS protocol...it just makes good sense to protect against strep and other bacteria, even if your child has viral related exacerbations...if nothing else, you're reducing the # of triggers.

[Megs_Mom]

I wouldn't argue with them, just be adamant that the purpose of the prophylactic Abx is to prevent strep. You know Abx does not eradicate viruses, but things would get even worse if he got strep as well.

I don't know if there is an official PANDAS protocol...it just makes good sense to protect against strep and other bacteria, even if your child has viral related exacerbations...if nothing else, you're reducing the # of triggers.

 

If you want to get daring, you can also ask about the "immune modulating and anti-inflamatory" properties that antibiotics such as Azithromyacin have been found to have. If they agree, you can then draw the connection between the inflamation that viruses may cause, and the support that the anti-biotic is therefore still giving the brain even when the inflam is caused by a virus. Our Neurologist (I am still in mourning!) is the one that raised this with us, and felt strongly that this was one of the reasons for reco'ing the Azith.

 

If they roll their eyes, then move on.

[matis_mom]

I wouldn't argue with them, just be adamant that the purpose of the prophylactic Abx is to prevent strep. You know Abx does not eradicate viruses, but things would get even worse if he got strep as well.

I don't know if there is an official PANDAS protocol...it just makes good sense to protect against strep and other bacteria, even if your child has viral related exacerbations...if nothing else, you're reducing the # of triggers.

Maybe it would be easier for them to "get it" if you parallel it to Rheumatic Fever... if you'd had it, you will be kept on profilactic antibiotics until 20 or 25! RF is a well known and no one would argue with that, since the risk of getting it again is pretty high. Just explain to them it's the same thing, except the antibodies are going for the brain instead of the joints. With that and a few good articles, they should get it.

 

Good luck!

[matis_mom]

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QUOTE(Amy B @ Oct 28 2009, 12:17 PM) 42884[/snapback]

Hi everyone. I have a quick question. I'm sure you've heard before. When asking the pedx and the neurologist about propolactic antibiotics they tell me that it won't help against viruses. And my ds has pandas reactions to all his illness (cold, flu, etc). Although if he gets strep he will again have the full blown TS. I just need to know how to respond to that question. I've already mentioned that getting strep is too big a risk that I do not wish to take.

 

Also isn't propolactic antibiotics the protocal for pandas? Please tell me if I am wrong. Thanks.

Just one more thing. My PANDAS ds is on colloidal silver to prevent viruses... so far it seems to be working.

 

Isabel

[thereishope]

When I tried the RF comparison it didn't budge them. They just abruptly ended the conversation and pretty much hung up on me (it was via the phone).

 

 

[

 

quote name=mati's mom' date='Oct 28 2009, 11:46 AM' post='42890]

I wouldn't argue with them, just be adamant that the purpose of the prophylactic Abx is to prevent strep. You know Abx does not eradicate viruses, but things would get even worse if he got strep as well.

I don't know if there is an official PANDAS protocol...it just makes good sense to protect against strep and other bacteria, even if your child has viral related exacerbations...if nothing else, you're reducing the # of triggers.

Maybe it would be easier for them to "get it" if you parallel it to Rheumatic Fever... if you'd had it, you will be kept on profilactic antibiotics until 20 or 25! RF is a well known and no one would argue with that, since the risk of getting it again is pretty high. Just explain to them it's the same thing, except the antibodies are going for the brain instead of the joints. With that and a few good articles, they should get it.

 

Good luck!

[peglem]

I wouldn't argue with them, just be adamant that the purpose of the prophylactic Abx is to prevent strep. You know Abx does not eradicate viruses, but things would get even worse if he got strep as well.

I don't know if there is an official PANDAS protocol...it just makes good sense to protect against strep and other bacteria, even if your child has viral related exacerbations...if nothing else, you're reducing the # of triggers.

Maybe it would be easier for them to "get it" if you parallel it to Rheumatic Fever... if you'd had it, you will be kept on profilactic antibiotics until 20 or 25! RF is a well known and no one would argue with that, since the risk of getting it again is pretty high. Just explain to them it's the same thing, except the antibodies are going for the brain instead of the joints. With that and a few good articles, they should get it.

 

Good luck!

 

That's what Dr. Cunningham told my pediatrician...that it's like RF of the brain!

[ajcire]

Peg, Dr. Cunninghman contacted your ped for you?

 

 

 

I wouldn't argue with them, just be adamant that the purpose of the prophylactic Abx is to prevent strep. You know Abx does not eradicate viruses, but things would get even worse if he got strep as well.

I don't know if there is an official PANDAS protocol...it just makes good sense to protect against strep and other bacteria, even if your child has viral related exacerbations...if nothing else, you're reducing the # of triggers.

Maybe it would be easier for them to "get it" if you parallel it to Rheumatic Fever... if you'd had it, you will be kept on profilactic antibiotics until 20 or 25! RF is a well known and no one would argue with that, since the risk of getting it again is pretty high. Just explain to them it's the same thing, except the antibodies are going for the brain instead of the joints. With that and a few good articles, they should get it.

 

Good luck!

 

That's what Dr. Cunningham told my pediatrician...that it's like RF of the brain!

[peglem]

No, I asked her if she would be willing to discuss the results with him. She said absolutely. He called her after I shared her studies and Allie's test results with him. She also referred him to Dr. Latimer and he called and had a conversation about treatment plans with Dr. Latimer.

 

Peg, Dr. Cunninghman contacted your ped for you?

 

That's what Dr. Cunningham told my pediatrician...that it's like RF of the brain!

[EAMom]

The Stanford rheumatologist we saw said the same thing..."rheumatic fever of the brain."

[Amy B]

Thank you so much for the advice. I am going to take notes from you in the morning. Really I am. I will write all the topics and get my ammo. together, so I am sure of what I am saying. Rf of the brain is easy to get the point across. Even I can understand that. Can you tell me more about that silver for the viruses. I will try to look it up in the morning. Thanks again. Hopefully I will have an opportunity to speak with neurologist's nurse tomorrow. We never speak to the neurologist just the nurse. Is that the norm.

[thereishope]

When you say you only speak to the nurse...do you mean on the phone? In person, you should be seeing the neurologist. On the phone, and sometimes email, the nurse fields the conversations and acts as the liason. But you can insist that you speak directly to the dr. Just know it may be longer to get a response. It may not even be same day.

[mama2alex]

Take them the following article!!! Hopefully your Pediatrician and Neurologist are smart enough to understand the information BUT if not change DR.'s. Please challenge their intelligence!

Again, simple to understand comments from Cunningham and Swedo:

However, antibodies are not terribly discriminating and sometimes cannot tell a streptococcus bacterium apart from a healthy cell. In some children, these antibodies pass into the brain and look for something to connect with. In PANDAS, the strep antibodies are unable to discriminate between strep and healthy brain cells. However, the union of strep antibody and neural tissue is not a match made in heaven. Recent research, reported last fall by University of Oklahoma researcher, Madeleine Cunningham, suggests that the antibodies connect with parts of the brain which regulate repetitive behaviors and movement, such as compulsions and tics. According to Dr. Swedo, such autoimmune actions may have the direct result of producing obsessions, compulsions and tics; and in addition, they might indirectly offset the critical balance of brain chemistry which regulates mood and emotion.

Compounding the problem is the durability of strep antibodies. They can remain on the prowl for a hook up weeks after the strep is gone. Subsequent infections or even colds can stimulate the immune system to produce more of the same kind of antibodies which the triggered the original symptoms. PANDAS children can then abruptly re-experience the same symptoms after a symptom-free span of time. Dr. Swedo explained, "We see a saw-toothed pattern of symptoms, extreme outbursts of behaviors for a brief period in response to the infections and then the child may be relatively symptom-free for a period of time."

SFMom,

Can you repost the link or email it to me? I couldn't get it to work and would really like to have a copy of this article.

Thanks!
Jennifer

Edited October 25, 2016 by Administrator
URL has been deleted since it is no longer a valid link

[KeithandElizabeth]

Isabel:

 

How much of the colloidal silver are you using. We actually just started giving it to our son today.

 

Elizabeth