A PANDAS FAQ

[Worried_Dad]

I hear you, LLM. Didn't mean to imply that CBT/ERP aren't useful once an exacerbation has "died down," just that we found it to be ineffective during the "brain storms." We actually plan to resume CBT/ERP with our therapist next year, once we see how much OCD is left after more time on the high-dose augmentin.

 

And - as you so beautifully captured below - just because the symptoms are similar doesn't mean the treatment (meds) should be the same. We actually saw a child psychiatrist who flat-out admitted he was baffled by our son's condition: he said it didn't seem like normal OCD, definitely seemed anxiety-related, but (based on our son's reaction to previous psych meds) he did not feel comfortable prescribing any meds. (He couldn't help us, but we respected his honesty.)

 

 

For our son, CBT/ERP therapy was simply a waste of time during exacerbation (our therapist gave up). And the psych meds (SSRI, neuropeptics, benzos) were horrible - like pouring nitro on a bonfire!

 

 

Why shouldn't PANDAS be treated like "any other case of OCD or tics" like the NIMH webiste recommends?

 

CBT and ERP have been great tools for my family. It was extremely helpful to control rages and we are using it to help with residual OCD that my son is only now able to talk about. So I would always encourage CBT/ERP as coping tools while you work toward recovery. It is never a bad thing to practice being the boss of your own thoughts and emotions.

 

But absolutely agree that meds should not be recommended nor should Pandas be treated like classic OCD. Gee, nurse - one patient is bleeding because he skinned his knee and one is bleeding because of this bullet in his leg, but both are bleeding, so get me two bandaids. The symptoms are the same.

[thereishope]

You know what I found interesting. I was looking up Ibuprofen to see if I can get mroe info why it works. In Alzheimer's research they found that NSAID can delay the onset of Alzheimers, but IB was more effective than naproxen (Aleve). I think they said IB passes through the BBB better?

 

 

On the Ibuprofen one. Can you () w/ brand name . I don't think some know that Advil and Motrin are IB.

 

Ibuprofen (Advil, Motrin)

Sure can...

 

Diana P said good things have been said about Aleve too.

We can't support that as we didn't see any benefit from Aleve. Aleve isn't an Ibuprofen and operates in a different way. It might be effective, but we didn't see it when we tried it. If there's others who have seen a benefit from Aleve I can add it.

 

Buster

[sf_mom]

Buster, I could have used something like this about 4 months ago. THANK YOU for taking the time...... it will help so many!!!!!!!!!!!!!!!!!!!!!!!!!!!

 

-Wendy

[thereishope]

Do you want to include the question if PANDAS can be cured?

 

It seems many of us have different views of what the word "cured" means and if it can be. Or rather if it goes into remission (which is more the way I view it).That one gets asked sometimes, but not every time.

[Buster]

Do you want to include the question if PANDAS can be cured?

 

It seems many of us have different views of what the word "cured" means and if it can be. Or rather if it goes into remission (which is more the way I view it).That one gets asked sometimes, but not every time.

I put in a Q/A -- does that work -- or were you saying to remove the item from the FAQ. By the way, happy to add/remove anything here... Figure we're the best testers of what makes a good FAQ.

[kim]

One other comment that I know others will not agree with - I respect others' opinions about vaccines. But I don't think it belongs on a Q&A about Pandas. I think it's muddying the waters. I personally think a vaccine discussion belongs in a separate place, not a Q&A. Just m.o.

 

Does anyone think, just a word of caution would be ok? I'm thinking of a child who has had 1 in a series of vaccines, it's not correlated with any exacerbation, and gets the 2nd or 3rd because a parent has no idea. Think back to Judy's post about her grandson who was vaccinated while ill and had a horrible onset of symptoms. There should be a way to just gently caution a parent. We have had several remarks from people seeing Dr.s who are very up on this, that are not in favor of further vaccination in some instances. If this were what Buster was working on for the NIMH, that might be different. Maybe, something like "while vaccination is a personal decision that should be thoughtly dicussed with your childs medical care provider, please note that some parents have witnessed adverse reactions or symptom exacerbations with vaccinations, which can profoundly affect the function of the immune system."

 

I can't see where a "heads up" in this area is unwarranted. Some of the vax inserts even have cautionary statements regarding neuro problems.

[Buster]

Yup, I found that interesting too. EAMom and I did a ton of reading around COX-II inhibitors based on that research. Our finding on our own daughter was that Advil definitely had an effect. Aleve did not. We tried both.

 

Buster

 

 

You know what I found interesting. I was looking up Ibuprofen to see if I can get mroe info why it works. In Alzheimer's research they found that NSAID can delay the onset of Alzheimers, but IB was more effective than naproxen (Aleve). I think they said IB passes through the BBB better?

 

 

On the Ibuprofen one. Can you () w/ brand name . I don't think some know that Advil and Motrin are IB.

 

Ibuprofen (Advil, Motrin)

Sure can...

 

Diana P said good things have been said about Aleve too.

We can't support that as we didn't see any benefit from Aleve. Aleve isn't an Ibuprofen and operates in a different way. It might be effective, but we didn't see it when we tried it. If there's others who have seen a benefit from Aleve I can add it.

 

Buster

[thereishope]

You know what, I reread "Q: Do I need IVIG or PEX to cure PANDAS?" and realized I misread. I probably skimmed it too quick. I thought it said it cured PANDAS. Sorry. That's what prompted me to ask that question.

 

 

Do you want to include the question if PANDAS can be cured?

 

It seems many of us have different views of what the word "cured" means and if it can be. Or rather if it goes into remission (which is more the way I view it).That one gets asked sometimes, but not every time.

I put in a Q/A -- does that work -- or were you saying to remove the item from the FAQ. By the way, happy to add/remove anything here... Figure we're the best testers of what makes a good FAQ.

[thereishope]

In any of the questions, does it touch base that viruses can cause setbacks? Many have said whenever their child's immune system is activated, they see some PANDAS, varying in levels of severity. Perhaps vaccines could be mentioned there. Not necessarily devote a whole question to it, but add it where appropriate.

 

I think I was looking more into helping parents find the reason for symptoms surfacing or worsening (like a past vaccine) rather telling them to boycott them. They could make a decision about their child's future vaccinations from there.

 

The whole idea is to teach new parents from our experiences. I think it would be a shame to let them learn the hard way.

 

 

One other comment that I know others will not agree with - I respect others' opinions about vaccines. But I don't think it belongs on a Q&A about Pandas. I think it's muddying the waters. I personally think a vaccine discussion belongs in a separate place, not a Q&A. Just m.o.

 

Does anyone think, just a word of caution would be ok? I'm thinking of a child who has had 1 in a series of vaccines, it's not correlated with any exacerbation, and gets the 2nd or 3rd because a parent has no idea. Think back to Judy's post about her grandson who was vaccinated while ill and had a horrible onset of symptoms. There should be a way to just gently caution a parent. We have had several remarks from people seeing Dr.s who are very up on this, that are not in favor of further vaccination in some instances. If this were what Buster was working on for the NIMH, that might be different. Maybe, something like "while vaccination is a personal decision that should be thoughtly dicussed with your childs medical care provider, please note that some parents have witnessed adverse reactions or symptom exacerbations with vaccinations, which can profoundly affect the function of the immune system."

 

I can't see where a "heads up" in this area is unwarranted. Some of the vax inserts even have cautionary statements regarding neuro problems.

[Buster]

Okay, I put two statements in, take a look and see if I went too far. I realize there is a significant amount of controversy here. I actually thought it amazing that the AMA recommends vaccines for children with primary immune deficiency. Typically, the only one's who don't get vaccines are those with T-cell deficiencies....

 

 

Buster

 

 

In any of the questions, does it touch base that viruses can cause setbacks? Many have said whenever their child's immune system is activated, they see some PANDAS, varying in levels of severity. Perhaps vaccines could be mentioned there. Not necessarily devote a whole question to it, but add it where appropriate.

 

I think I was looking more into helping parents find the reason for symptoms surfacing or worsening (like a past vaccine) rather telling them to boycott them. They could make a decision about their child's future vaccinations from there.

 

The whole idea is to teach new parents from our experiences. I think it would be a shame to let them learn the hard way.

 

 

One other comment that I know others will not agree with - I respect others' opinions about vaccines. But I don't think it belongs on a Q&A about Pandas. I think it's muddying the waters. I personally think a vaccine discussion belongs in a separate place, not a Q&A. Just m.o.

 

Does anyone think, just a word of caution would be ok? I'm thinking of a child who has had 1 in a series of vaccines, it's not correlated with any exacerbation, and gets the 2nd or 3rd because a parent has no idea. Think back to Judy's post about her grandson who was vaccinated while ill and had a horrible onset of symptoms. There should be a way to just gently caution a parent. We have had several remarks from people seeing Dr.s who are very up on this, that are not in favor of further vaccination in some instances. If this were what Buster was working on for the NIMH, that might be different. Maybe, something like "while vaccination is a personal decision that should be thoughtly dicussed with your childs medical care provider, please note that some parents have witnessed adverse reactions or symptom exacerbations with vaccinations, which can profoundly affect the function of the immune system."

 

I can't see where a "heads up" in this area is unwarranted. Some of the vax inserts even have cautionary statements regarding neuro problems.

[thereishope]

I read it and I need to think on it a little. To keep or omit...hmmm... I'd like to hear some other opinions. If we omit it, do you think the topic of vaccines comes up enough that parents will ask the forum before vaccinating just so they can make an educated decision?

 

Okay, I put two statements in, take a look and see if I went too far. I realize there is a significant amount of controversy here. I actually thought it amazing that the AMA recommends vaccines for children with primary immune deficiency. Typically, the only one's who don't get vaccines are those with T-cell deficiencies....

 

 

Buster

 

 

In any of the questions, does it touch base that viruses can cause setbacks? Many have said whenever their child's immune system is activated, they see some PANDAS, varying in levels of severity. Perhaps vaccines could be mentioned there. Not necessarily devote a whole question to it, but add it where appropriate.

 

I think I was looking more into helping parents find the reason for symptoms surfacing or worsening (like a past vaccine) rather telling them to boycott them. They could make a decision about their child's future vaccinations from there.

 

The whole idea is to teach new parents from our experiences. I think it would be a shame to let them learn the hard way.

 

 

One other comment that I know others will not agree with - I respect others' opinions about vaccines. But I don't think it belongs on a Q&A about Pandas. I think it's muddying the waters. I personally think a vaccine discussion belongs in a separate place, not a Q&A. Just m.o.

 

Does anyone think, just a word of caution would be ok? I'm thinking of a child who has had 1 in a series of vaccines, it's not correlated with any exacerbation, and gets the 2nd or 3rd because a parent has no idea. Think back to Judy's post about her grandson who was vaccinated while ill and had a horrible onset of symptoms. There should be a way to just gently caution a parent. We have had several remarks from people seeing Dr.s who are very up on this, that are not in favor of further vaccination in some instances. If this were what Buster was working on for the NIMH, that might be different. Maybe, something like "while vaccination is a personal decision that should be thoughtly dicussed with your childs medical care provider, please note that some parents have witnessed adverse reactions or symptom exacerbations with vaccinations, which can profoundly affect the function of the immune system."

 

I can't see where a "heads up" in this area is unwarranted. Some of the vax inserts even have cautionary statements regarding neuro problems.

[Buster]

Sorted original post into categories...

[thereishope]

I was thinking about those 2 vaccine questions in the Q and A. I think I am going to say that it is okay if you omit them.

 

As for the first question about whether vaccine causes PANDAS. I don't think it causes PANDAS, but I do think that they are amongst the toxins that our genetically suspceptible children are exposed to and may aid in having the possibility of PANDAS sufrace and be "ready" for strep.

 

As for the second question I think a new parent reading that will just have their head spinning. We have read the stories about kids have mild and severe setbacks soon after a vaccinnation. But some have also said there were other variables that may have had some responsibility in it resurfacing. What I don't know is how many kids went on to have vaccinations after PANDAS being triggered and were just fine. Even so, I would them have to ask those parents which vaccines they were and how long after there last full fledge PANDAS exacerbation, they received that vaccine. I guess what I'm saying, is for that question, it's just too long an answer with too many clauses and too many forks in the road.

 

For those who are familiar with autism. I'm curious when it started becoming more vocal that vaccines play a role in autism, can you try to give me a "history" on that helped or hindered the cause?

 

Now I think I am going to start a thread and see actually how many people think their child had a PANDAS setback or excaerbation due to a vaccine Like I said, we don't really hear from the people who did fine with vaccine after PANDAS surfaced. Maybe they don't feel comfortable speaking up? I do know soem states are hard to opt out and maybe those people living in those states need to hear those stories too.

[thereishope]

Great job! I don't often find peole who like to organize as much as I do:)

 

 

Sorted original post into categories...

[kim]

I feel as thought the research at this point indicates that the disease is an abberent response to Group A Beta-Hemolytic strep and we don't know what part vaccinations may have contributed to a malfunctioning immune system or a leaky BBB. We also don't know if injecting multiple strains of strep may have contributed to a "change" in the strep, or the bodies response or lack of response.

 

I don't feel that the Q&A page is the place to discuss that matter either. What do you think about skipping the "cause" question and simply saying:

 

 

Q. Will a vaccine trigger an exacerbation?

 

A. Possibly. There are several parent reports of onset or worsening of symptoms within a short period of time after recieving vaccinations. This is a very controversial area and talking with an immunologist with experience with MS, ARF or Sydenham Chorea is probably the best recommendation here.