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PANDAS- Permanant Brain Damage? also question about allergies


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55 replies to this topic

#1 Guest_alyssa_*

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Posted 03 September 2010 - 06:49 AM

Based upon what doctors have told you, does PANDAS cause permanent brain damage? What I was told was that when there is a breach in the blood brain barrier due to a strep infection, the antibodies can interact with the basal ganglia causing tics/ocd etc. However, now online I've read different things. What are you're thoughts on this? Also does anyone know WHY PANDAS symptoms seem to act up during allergy season and does that cause permanent brain damage?


#2 t_mom

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Posted 03 September 2010 - 09:16 AM

Hi -- I can only speak from our experience but with my d, who had severe and obvious Pandas episodes (OCD, mild ticcing, posturing, severe writing issues, etc.) our experience was that she fully recovered with treatments. In her case full strength long-term antibiotics (as if she had strep) and steroid burst were essential.

#3 worried_dad

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Posted 03 September 2010 - 09:20 AM

From what I've heard and read, most experts believe that the autoimmune response itself doesn't cause permanent damage - no demyelination (sp?) or anything like that. But it does appear that - for chronic PANDAS sufferers, especially those afflicted at a very young age - the neural pathways associated with symptoms may become "locked in" somewhat over time. So even when the patient is free of strep, the BBB is closed, and/or the autoimmune attack is no longer occurring, there may be residual effects.

Maybe Buster or one of the scientific gurus can clarify?

#4 Guest_alyssa_*

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Posted 03 September 2010 - 09:38 AM

Thank you so much for all of your answers.

#5 airial95

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Posted 03 September 2010 - 09:51 AM

Worried Dad - this is how it was explained to me too. With young children, so many neural pathways are being formed each day, that some of the OCD and tics may become "learned behaviors" outside of the PANDAS that caused them.

That's the reason we're doing behavior therapy with my son as well...

Mom of an exceptional 6 y/o son and 8 y/o daughter - BOTH with PANDAS.


#6 nevergiveup

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Posted 03 September 2010 - 10:30 AM

There are reports of full recovery, and reports of long term residual symptoms. If this does cause brain inflammation (hence the antiinflammatories our kids use to help symptoms) It is unrealistic to assume that brain inflammation cannot cause permanent damage. Can the brain relearn or grow new cells, yes, seen in stroke victims, MS, lupus. but it is harder for the older kids to heal, and harder for those that have had many attacks. So yes, I do believe permanent damage can be caused by the inflammation. There is no proof to say either way, maybe with better imaging technology we will know for sure. Currently, an MRI doesn"t even show inflammation, on most panda kids, but inflammation is assumed by all of us whom give motrin to reduce symptoms.

#7 laure

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Posted 03 September 2010 - 10:47 AM

There are reports of full recovery, and reports of long term residual symptoms. If this does cause brain inflammation (hence the antiinflammatories our kids use to help symptoms) It is unrealistic to assume that brain inflammation cannot cause permanent damage. Can the brain relearn or grow new cells, yes, seen in stroke victims, MS, lupus. but it is harder for the older kids to heal, and harder for those that have had many attacks. So yes, I do believe permanent damage can be caused by the inflammation. There is no proof to say either way, maybe with better imaging technology we will know for sure. Currently, an MRI doesn"t even show inflammation, on most panda kids, but inflammation is assumed by all of us whom give motrin to reduce symptoms.


How much motrin would it be appropriate to give a 9 year old 82 pounder?
Mom of Dd12, Lyme/PANDAS since 3/10

#8 Guest_alyssa_*

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Posted 03 September 2010 - 11:13 AM

There are reports of full recovery, and reports of long term residual symptoms. If this does cause brain inflammation (hence the antiinflammatories our kids use to help symptoms) It is unrealistic to assume that brain inflammation cannot cause permanent damage. Can the brain relearn or grow new cells, yes, seen in stroke victims, MS, lupus. but it is harder for the older kids to heal, and harder for those that have had many attacks. So yes, I do believe permanent damage can be caused by the inflammation. There is no proof to say either way, maybe with better imaging technology we will know for sure. Currently, an MRI doesn"t even show inflammation, on most panda kids, but inflammation is assumed by all of us whom give motrin to reduce symptoms.



The more that I've researched, I have to disagree with you and agree more with the above answers. Where are you basing your information from? The inflammation causes the tics and OCD. If the inflammation caused permanent damage, then the treatments such as steroids, IVIG, and plasmapheresis would not put PANDAS symptoms back into remission. Perhaps the same dosage of IVIG may not be as effective in adults as in children but that doesn't mean that another treatment such as pulse steroids or plasmapheresis would have the same results.
I thought the reason why long residual symptoms occur has to do with weakness within the blood brain barrier and that kids with PANDAS always have a low level of antibodies being produced against their brain because they have a resistant form of strep hiding somewhere in their body. Cunninghams test shows evidence of these antibodies.

#9 vickie

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Posted 03 September 2010 - 11:36 AM

According to my bottle, your child can get 300mg.



There are reports of full recovery, and reports of long term residual symptoms. If this does cause brain inflammation (hence the antiinflammatories our kids use to help symptoms) It is unrealistic to assume that brain inflammation cannot cause permanent damage. Can the brain relearn or grow new cells, yes, seen in stroke victims, MS, lupus. but it is harder for the older kids to heal, and harder for those that have had many attacks. So yes, I do believe permanent damage can be caused by the inflammation. There is no proof to say either way, maybe with better imaging technology we will know for sure. Currently, an MRI doesn"t even show inflammation, on most panda kids, but inflammation is assumed by all of us whom give motrin to reduce symptoms.


How much motrin would it be appropriate to give a 9 year old 82 pounder?



#10 nevergiveup

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Posted 03 September 2010 - 11:45 AM

Didn't u ask the question????? I gave my docs opinion. There are kids with low cunningham test and still have tics. Sometimes tics never go away. Our kids brains are developing, any inflammation can cause permanent damage. Ever hear of head hit syndrome. I think we are kidding ourselves to believe with each assault on our childrens brain, there is not the potential for damage. No doc can clearly tell u. One thing for sure though, is the brain can regrow neurons or compensate in other areas. This becomes less likely the older we get. Hence why younger children do better with symptom resolution. I do believe brain damage is possible with any inflammation in the brain. In MS and stroke the inflammation causes paralysis and other symptoms. However with time as the inflammation reduces many symptoms reduce, sometime go completely away. But NOT in all cases do symptoms completely resolve. (MS/stroke) I think we are being completely unrealistic to think any assault on the brain cannot cause some damage. As much as I respect Dr. Cunningham, I believe a neurologist is best to answer this question. What are you researching, brain inflammation or PANDAS? No one has ever done a study on this for PANDAS. In some children, (Leckman) (pandas & ts) they see parts of the brain enlarged (caudate), these kids seem to have a more symptoms that never remiss. Also many children(PANDAS) are coded as an autoimmune encephaltis to receive treatment for PEX, and yes in an autoimmune encephalytis brain damage is possible. We cannot call this an autoimune encephalytis and ignore the fact that it could cause brain damage. I know it is not what we want to think, but quick treatment of brain inflammation is crucial to prevent brain damage. We can agree to disagree if u want. Did u want all the responses to say what u wanted to hear?


There are reports of full recovery, and reports of long term residual symptoms. If this does cause brain inflammation (hence the antiinflammatories our kids use to help symptoms) It is unrealistic to assume that brain inflammation cannot cause permanent damage. Can the brain relearn or grow new cells, yes, seen in stroke victims, MS, lupus. but it is harder for the older kids to heal, and harder for those that have had many attacks. So yes, I do believe permanent damage can be caused by the inflammation. There is no proof to say either way, maybe with better imaging technology we will know for sure. Currently, an MRI doesn"t even show inflammation, on most panda kids, but inflammation is assumed by all of us whom give motrin to reduce symptoms.



The more that I've researched, I have to disagree with you and agree more with the above answers. Where are you basing your information from? The inflammation causes the tics and OCD. If the inflammation caused permanent damage, then the treatments such as steroids, IVIG, and plasmapheresis would not put PANDAS symptoms back into remission. Perhaps the same dosage of IVIG may not be as effective in adults as in children but that doesn't mean that another treatment such as pulse steroids or plasmapheresis would have the same results.
I thought the reason why long residual symptoms occur has to do with weakness within the blood brain barrier and that kids with PANDAS always have a low level of antibodies being produced against their brain because they have a resistant form of strep hiding somewhere in their body. Cunninghams test shows evidence of these antibodies.



#11 phillypa

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Posted 03 September 2010 - 12:09 PM

Nevergiveup - reading your answer makes me sick to stomach because I know that you are right. You are saying what no one wants to believe. You are making real everyone's most real fear. I know at least in the back of my head I think to myself, "Did I catch it to late?" "Has to much time gone by?" "Have I failed to save him?"

You hit the nail on the head.

#12 graceunderpressure

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Posted 03 September 2010 - 12:14 PM

On one of Dr. Susan Schulman's PANDAS videos, she mentions that we do not know if there is brain damage to those who have experienced longterm inflammation. From what she said, I got the impression that the current thinking is that after 10 yrs there may well be some permanent damage. (My ds has had his problems for at least 14 yrs so you can understand how that has stayed with me)

Since it's still something that has been unexplored at this point, whatever we hear or read is going to be someone's opinion. But I would expect those opinions are most likely based on what is known (or believed to be known) about the brain & other inflammatory conditions.

#13 nevergiveup

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Posted 03 September 2010 - 12:21 PM

Worried Dad, Swedo has a video online that shows this exactly, it was her autism video, I believe she did in San diego several years ago explaining her original pandas study. She had an adolescent boy with MRI inflammtion, very evident basal ganglia inflammtion and he had lots of symptoms, he had PEX and the antibodies removed and the next MRI showed a large reduction in inflammation but he saw minimal symptom resolution. He actually had symptoms reappear with no inflammation later. No antibodies, no inflammtion but still symptoms. This is why so many parents have fought so hard on this forum to advocate treatment ASAP for our children. Because we do not know exactly what is happening, but with MRI evident basal ganglia inflammation, this was a very severe case and symptoms did not improve with reduction of inflammtion and removal of antibodies.

#14 Fixit

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Posted 03 September 2010 - 12:30 PM

There are reports of full recovery, and reports of long term residual symptoms. If this does cause brain inflammation (hence the antiinflammatories our kids use to help symptoms) It is unrealistic to assume that brain inflammation cannot cause permanent damage. Can the brain relearn or grow new cells, yes, seen in stroke victims, MS, lupus. but it is harder for the older kids to heal, and harder for those that have had many attacks. So yes, I do believe permanent damage can be caused by the inflammation. There is no proof to say either way, maybe with better imaging technology we will know for sure. Currently, an MRI doesn"t even show inflammation, on most panda kids, but inflammation is assumed by all of us whom give motrin to reduce symptoms.


i am sorry to possibly hijack this thread too..
but i need to hear this if it true..ds has had 3 attacks a year from 3-8 1/2 that's roughly 15attacks..and then this one 1 1/2 years ago..he is 10 1/2...OMG..my poor boy...

So even though he is so much better than before the taper which ended 38days ago...he is not 100%...i think i could say a solid 80....so do i still procede with the bigs guns...

can i still see some healing from the taper....i will say that i can see that ibuprofren does help now...before he was too far gone for it to have any effect...his system, has calmed to were these thing might help....
doc l gave me the impression that the steriod could continue to do work well after it was done..she inclinated 6 months maybe a year....is that realistic...or maybe more like 3 months..seems plausible

should i do another taper..as we have slipped some from our best point, about 3 1/2 weeks ago...
to get his brain uninflamed and try to control from there..instead of trying to keep quieting it from 15-20% out.

include the fact that he was pretty severe..so maybe he needed more than a 4 week taper..5 may have been more the order considering his severity.....does that make sense...i mean if he were in moderate state at the start of the taper,maybe we could have had complete success sooner in and longer lasting

is there anything that anyone has experienced that is similar...maybe someone has done this...
it may only be a theory, but that is how science starts...and maybe makes sense..just like when an abx isn't working and you have to get another round??

#15 Fixit

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Posted 03 September 2010 - 12:35 PM


There are reports of full recovery, and reports of long term residual symptoms. If this does cause brain inflammation (hence the antiinflammatories our kids use to help symptoms) It is unrealistic to assume that brain inflammation cannot cause permanent damage. Can the brain relearn or grow new cells, yes, seen in stroke victims, MS, lupus. but it is harder for the older kids to heal, and harder for those that have had many attacks. So yes, I do believe permanent damage can be caused by the inflammation. There is no proof to say either way, maybe with better imaging technology we will know for sure. Currently, an MRI doesn"t even show inflammation, on most panda kids, but inflammation is assumed by all of us whom give motrin to reduce symptoms.



The more that I've researched, I have to disagree with you and agree more with the above answers. Where are you basing your information from? The inflammation causes the tics and OCD. If the inflammation caused permanent damage, then the treatments such as steroids, IVIG, and plasmapheresis would not put PANDAS symptoms back into remission. Perhaps the same dosage of IVIG may not be as effective in adults as in children but that doesn't mean that another treatment such as pulse steroids or plasmapheresis would have the same results.
I thought the reason why long residual symptoms occur has to do with weakness within the blood brain barrier and that kids with PANDAS always have a low level of antibodies being produced against their brain because they have a resistant form of strep hiding somewhere in their body. Cunninghams test shows evidence of these antibodies.


i hope you are right, as the permanent damage scares the bajeebers out of me..ds' multiple onsets :(

..but what part of the test is that...??
i think the test just shows the body in an overstimulated state in these areas...??
i could be wrong...
but ds' last onset from a complete remission state, was myco p...i know myco p solely creates pitands...
are you saying that myco p activated the strep antibodies???
and ds never healed from the onset 1 1/2 years ago..got better...but when allergy season hit he went into full chorea movements...no strep...




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