pandas vs. pitand

[norcalmom]

I think Cunningham mentioned it in her preso at Austism One. I know that Dr T talks about it in his, as does Dr. B. I would have to review the tapes again - I bought them all - becuase Dr. C was FLYING though her info so she could catch a plane.

 

And P. Mom had a meeting with Cunningham and her notes from that meeting(link below) say:

"3. Strep is not the only cause of the neuropsychiatric symptoms. Many other viruses/bacterias can result in the same type of syndrome...but, it is still the same type of autoimmune dysfunction/problem. You won't find strep anywhere in this case.....this would be the PITANDS syndrome. This can also produce high Cam Kinase.....particularly Lyme...it produces high Cam K results. In a viral cause of symptoms, antibiotics will not help...but, steriods can be given to bring the episode under control if the episode is bad enough. Strep induced (bacteria induced) episodes should resolve/diminish with antibiotics."

 

http://www.latitudes.org/forums/index.php?showtopic=9361

[trggirl]

Thanks Norcalmom!!!!

[justinekno]

Yes, she said it appears that in the case of PANDAS like symptoms and a positive Lyme test, there can be a positive CaM kinase II test. She said it is also possible that the person had strep and the tests might not show it. I believe this is something she is looking into further.

 

I know she never said CamK II was exclusive to Strep, but did she say that it was increased by Lyme and Mycoplasma?

[tpotter]

b]due to my personal experience [/b]-- i would like to see a protocol come out that includes testing for all possible infections that could cause these symptoms. and unfortunately, there are many -- strep, lyme, myco, cytomegalovirus, ebv, toxoplasma, hhv6, and who knows what else.

 

 

 

OMG...I totally agree. And, this would so help our kids get tx.

[kimballot]

b]due to my personal experience [/b]-- i would like to see a protocol come out that includes testing for all possible infections that could cause these symptoms. and unfortunately, there are many -- strep, lyme, myco, cytomegalovirus, ebv, toxoplasma, hhv6, and who knows what else.

 

 

 

OMG...I totally agree. And, this would so help our kids get tx.

 

Count me in with the folks who agree with this. A protocol would be great!

[airial95]

I also remember during my son's recovery that he would have a setback (enough to really make me nervous) and then a few days later bounce back, not only to where he was prior to the setback but even better. I wonder if anyone else experiened that without IVIG. With IVIG, I suppose it would be referred to as turning back the pages. Yet, my son did not have IVIG

 

 

When I say what helped my son, I do always say antibiotics AND time. It's hard to let time do its thing, but it was part of the equation for him.

 

[

 

Yes, and it is proving out in our case, as well. There have been times when I've been almost completely demoralized because the healing trajectory seems to have stalled out. I've considered other interventions, researched other possibilities, thought about changing abx or even moving on to IVIG.

 

And then, almost like an answer to my dilemma, DS will move ahead again on his own, down the road to recovery, without my having implemented any changes at all. I am, by my very nature, impatient, but PANDAS is a strict task-master, and I'm being forced to learn these days.

 

Vickie, we have seen the same pattern with our son - without IVIG. So I agree, time is a key piece to the puzzle. That's why tracking/logging his behaviors has been so helpful to us. We can see those setbacks, but we can also look back over the long term and see how even those set backs are still better than where we were 2 months ago, 3 months ago, 6 months etc. By still being able to see the progress - however slow and prodding it may be - has helped us be a bit more patient than I think we'd be otherwise.

 

Of course - as I say this, my son is at day care continuously taking off his clothes because they're "broken" and peeing every 15 minutes wherever he may be standing...so it's really hard to be patient!!!

[kimballot]

I also remember during my son's recovery that he would have a setback (enough to really make me nervous) and then a few days later bounce back, not only to where he was prior to the setback but even better. I wonder if anyone else experiened that without IVIG. With IVIG, I suppose it would be referred to as turning back the pages. Yet, my son did not have IVIG

 

 

When I say what helped my son, I do always say antibiotics AND time. It's hard to let time do its thing, but it was part of the equation for him.

 

[

 

Yes, and it is proving out in our case, as well. There have been times when I've been almost completely demoralized because the healing trajectory seems to have stalled out. I've considered other interventions, researched other possibilities, thought about changing abx or even moving on to IVIG.

 

And then, almost like an answer to my dilemma, DS will move ahead again on his own, down the road to recovery, without my having implemented any changes at all. I am, by my very nature, impatient, but PANDAS is a strict task-master, and I'm being forced to learn these days.

 

Vickie, we have seen the same pattern with our son - without IVIG. So I agree, time is a key piece to the puzzle. That's why tracking/logging his behaviors has been so helpful to us. We can see those setbacks, but we can also look back over the long term and see how even those set backs are still better than where we were 2 months ago, 3 months ago, 6 months etc. By still being able to see the progress - however slow and prodding it may be - has helped us be a bit more patient than I think we'd be otherwise.

 

Of course - as I say this, my son is at day care continuously taking off his clothes because they're "broken" and peeing every 15 minutes wherever he may be standing...so it's really hard to be patient!!!

 

I have also seen slow, steady progress after an exacerbation. Truly the "saw tooth" pattern that Swedo talks about, with a sudden rise in symptoms with an exacerbation, and then a slow reduction in symptoms. However, when I see the "backward" times... if it is more than one day... then it usually signals in illness for me. It really is not strep for my son (from what I can tell). It is more likely allergies, sinus infection, or a basic cold. Last year was H1N1 and that was the start of a very long exacerbtion - not just a little blip.

[Fixit]

I also remember during my son's recovery that he would have a setback (enough to really make me nervous) and then a few days later bounce back, not only to where he was prior to the setback but even better. I wonder if anyone else experiened that without IVIG. With IVIG, I suppose it would be referred to as turning back the pages. Yet, my son did not have IVIG

 

 

When I say what helped my son, I do always say antibiotics AND time. It's hard to let time do its thing, but it was part of the equation for him.

 

[

 

Yes, and it is proving out in our case, as well. There have been times when I've been almost completely demoralized because the healing trajectory seems to have stalled out. I've considered other interventions, researched other possibilities, thought about changing abx or even moving on to IVIG.

 

And then, almost like an answer to my dilemma, DS will move ahead again on his own, down the road to recovery, without my having implemented any changes at all. I am, by my very nature, impatient, but PANDAS is a strict task-master, and I'm being forced to learn these days.

 

Vickie, we have seen the same pattern with our son - without IVIG. So I agree, time is a key piece to the puzzle. That's why tracking/logging his behaviors has been so helpful to us. We can see those setbacks, but we can also look back over the long term and see how even those set backs are still better than where we were 2 months ago, 3 months ago, 6 months etc. By still being able to see the progress - however slow and prodding it may be - has helped us be a bit more patient than I think we'd be otherwise.

 

Of course - as I say this, my son is at day care continuously taking off his clothes because they're "broken" and peeing every 15 minutes wherever he may be standing...so it's really hard to be patient!!!

 

I have also seen slow, steady progress after an exacerbation. Truly the "saw tooth" pattern that Swedo talks about, with a sudden rise in symptoms with an exacerbation, and then a slow reduction in symptoms. However, when I see the "backward" times... if it is more than one day... then it usually signals in illness for me. It really is not strep for my son (from what I can tell). It is more likely allergies, sinus infection, or a basic cold. Last year was H1N1 and that was the start of a very long exacerbtion - not just a little blip.

 

can i ask all you how long you mean by slow...

 

the taper ended 44 days ago..at day 42 i was ready to post we where 85-90% better..and then he walked through the door

 

.and i would say we had sawtooth with that..though i have had to address allergies...

and 2 days ago i think clostridia came back...

 

are you ladies talking 3-6 8 months to recover????

i'm trying to figure it out...because prio to this onset, as i've said a zillion times..i would get betterment in 24 hours..almost gone 2 weeks and remissio in 4 weeks.....I WAS SPOILED!!!!!

 

So my expectations are way off(i think,hope)

[airial95]

It's taken us almost 9 months to get to 85% - and that's with several "sawtooths" in between. But with us - even our setbacks were continually less severe than the previous ones. The only time we went WAAAAAAY back was if he got strep (which happened 2x since long term abx started).

 

But after each strep infection - the time to get back to where we left off prior to infection was shorter each time. Even with the "sawtooth" - most of our spikes (with the exception of only 1 or 2 could be directly related back to a confirmed exposure of strep in his or his sisters classroom.

 

Now that being said - I was happy with where we were, and the progress we were making (even if it was slow - it was steady). But yesterday Dr. Murphy decided to change us up. We're going back to full strength and switching to Omnicef - which is her abx of choice. We'll do that for 30 days and then we have a follow up with her to see where we go from there. Maybe this will be the jump start we need to get past that last 15%.

 

But considering today he's running around daycare naked and peeing everywhere - I think we may be in the middle of a sawtooth peak and might have a little farther than 15% to go right now...

[KeithandElizabeth]

We had an interesting appointment with our LLMD yesterday discussing these topics.

 

My daughter initially had strep, mycoplasma, lyme and babesia. All are gone now except the babesia. Anyway, I told him that her OCD/TICs are gone, but that she still has mild anxiety (in terms of going to sleep alone, etc..) , which I felt was correlated with Bartonella. She ended up testing negative for Bartonella, but still positive for Babesia.

 

He said that he disagrees with a great deal of the sentiments in the lyme/PANDAS world about certain bacterias causing certain symptoms. He said that if any of these bacterias/parasites can cross the blood brain barrier and enter the brain, then they can create a neurological/psychiatric symptoms. He said he felt that the babesia was creating the anxiety in my daughter.

 

So, again, I do not understand all of the controversy between lyme and PANDAS. I think it is all PITANDS and different microbes can create the same symptoms.

 

Elizabeth

[Fixit]

We had an interesting appointment with our LLMD yesterday discussing these topics.

 

My daughter initially had strep, mycoplasma, lyme and babesia. All are gone now except the babesia. Anyway, I told him that her OCD/TICs are gone, but that she still has mild anxiety (in terms of going to sleep alone, etc..) , which I felt was correlated with Bartonella. She ended up testing negative for Bartonella, but still positive for Babesia.

 

He said that he disagrees with a great deal of the sentiments in the lyme/PANDAS world about certain bacterias causing certain symptoms. He said that if any of these bacterias/parasites can cross the blood brain barrier and enter the brain, then they can create a neurological/psychiatric symptoms. He said he felt that the babesia was creating the anxiety in my daughter.

 

So, again, I do not understand all of the controversy between lyme and PANDAS. I think it is all PITANDS and different microbes can create the same symptoms.

 

Elizabeth

 

if i can expand on that thought..i agree with once you preesent with a condition, the cause cause may be unlimited(what ever infection, autoimmunune conditon the cause)..but i don't think because you get myco you rage, strep you tic...i think each individuals presentaton is their presentaton no matter what they get....

there can be some of a specific germ creating a specific response..but then we end up just like the docs who say strep only causes rf and sf ...no such thing as strep a causing neurological issues..no other presentaions allowed..(and look at the poupori of symptoms we pan/pit parents say we have).....i think the causes may be unlimited and presentatoins as well.

JMHO..

[thereishope]

That is when I kind of established our own 3 day rule. It seemed like the bigger setbacks that occurred as part of the healing process wouldn't really remain bad for more than 3 days. Now, if regression in recovery lasted more than 3 days, I knew there was probably a trigger...like allergies for example. I have said in other threads, that when it's strep, he has had tell tale meltdowns that mark the beginning of a full blown strep triggered exacerbation. When those occur, I don't hesitate to get him to a doctor. In those moments, I know "it" is back.

 

 

I also remember during my son's recovery that he would have a setback (enough to really make me nervous) and then a few days later bounce back, not only to where he was prior to the setback but even better. I wonder if anyone else experiened that without IVIG. With IVIG, I suppose it would be referred to as turning back the pages. Yet, my son did not have IVIG

 

 

When I say what helped my son, I do always say antibiotics AND time. It's hard to let time do its thing, but it was part of the equation for him.

 

[

 

Yes, and it is proving out in our case, as well. There have been times when I've been almost completely demoralized because the healing trajectory seems to have stalled out. I've considered other interventions, researched other possibilities, thought about changing abx or even moving on to IVIG.

 

And then, almost like an answer to my dilemma, DS will move ahead again on his own, down the road to recovery, without my having implemented any changes at all. I am, by my very nature, impatient, but PANDAS is a strict task-master, and I'm being forced to learn these days.

 

Vickie, we have seen the same pattern with our son - without IVIG. So I agree, time is a key piece to the puzzle. That's why tracking/logging his behaviors has been so helpful to us. We can see those setbacks, but we can also look back over the long term and see how even those set backs are still better than where we were 2 months ago, 3 months ago, 6 months etc. By still being able to see the progress - however slow and prodding it may be - has helped us be a bit more patient than I think we'd be otherwise.

 

Of course - as I say this, my son is at day care continuously taking off his clothes because they're "broken" and peeing every 15 minutes wherever he may be standing...so it's really hard to be patient!!!

 

I have also seen slow, steady progress after an exacerbation. Truly the "saw tooth" pattern that Swedo talks about, with a sudden rise in symptoms with an exacerbation, and then a slow reduction in symptoms. However, when I see the "backward" times... if it is more than one day... then it usually signals in illness for me. It really is not strep for my son (from what I can tell). It is more likely allergies, sinus infection, or a basic cold. Last year was H1N1 and that was the start of a very long exacerbtion - not just a little blip.

[thereishope]

My son's first and second strep triggered exacerbations took somwhere between 4-8 weeks to resolve after starting antibiotics(mind you, I caught strep #1 within 2 weeks of onset and all other strep exacerbations in a matter of a day of onset). The third strep triggered exacerbation took 6 months to resolve, but he did have residual OCD and I count that as part of his exacerbation in terms of timelines since the residual OCD was a result of PANDAS. As for non-strep triggers, they didn't last very long, but with his allergy trigger in Mar 2009, that one was severe and "strep like". However, once I got his allergies under control, I did start to see him going back on track to recovery.

 

 

 

 

are you ladies talking 3-6 8 months to recover????

 

Edited September 10, 2010 by Vickie

[airial95]

Vickie,

 

That's funny - when we just have an "exposure" not an actual strep/sickness event ourselves - we see a regression of about 3 days too...

 

We think our troubles this week are allergy related. I've read alot on here about allergies having an impact but to date, my son didn't have allergy problems...til now.

 

Although, Dr. Murphy still changed his antibiotic, even though the rapid test was neg.

[thereishope]

arial, how old is your son again? 2 1/2? I've heard that allergies don't really start to surface until 2 years old. So, if you were wondering if they were PANDAS related...maybe... but then perhaps he is developing allergies he would he eventually had anyway? Do you and your huband have allergies? Oddly, this year, my PANDAS son allergies aren't bad, almost non-existant. I know it's allergy season here since my non-PANDAS son's allergies are AWFUL, the worst they have ever been. My two sons usually have allergies at the same time. Are my PANDAS son's allergies a little better now becasue his PANDAS is better? Don't know. I can find questions with everything. I guess I need to be happy his allergies just aren't bad right now.

 

As for upping the antibiotics even though you suspect allergies are playing a role...well, it's probably a good idea. If he's ramping at all from allergies, this would definitely not be the time to get strep too. Not that any time is a good time, but you know what I mean. It could really send him overboard.See the raised antibiotics as extra protection at an already vulnerable time.

Edited September 10, 2010 by Vickie