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PANDAS- Permanant Brain Damage? also question about allergies


Guest alyssa

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Grace, Don't loose hope, just becuz there may be some brain damage, it does not mean that it is not tolerable. Many people with brain lesions relearn behavior, retrain muscles etc..... The brain can be damaged and compensate in other ways. Many people have brain lesions with minimal residual symptoms. It can take years of retraining the brain but there are so many success stories from strokes, lupus, head trauma, MS where their mri's show damage but no symptoms are evident. My sis had part of her brain removed (now thats brain damage) when she had a tumor removed. Took several years but her brain compensated and she is 100%. I mean 100%. Preventing future attacks and quick treatments during an attack are the best we can do to prevent further issues and help our children heal!!!! I just do not think we should ever give the impression that this is a self limiting disease as my neurologist once told me. If we truly believe that this illness does not cause brain damage and does resolve with no side effects, then we are further justifying treating the symptoms only and ignoring the cause. Treatments like PEX adn IVIG are expensive and have risks and should not be offered to children whom have a self limiting disease with no potential for long term damage. It clearly is not self limiting for all and quick treatment is necessary and should be expected for our children to prevent brain damage.

 

 

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.

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If ur child has a reduction in brain antibodies from the cunningham test pre and post steroids u can feel a little better that the antibodies are reduced and he could still be suffereing residual symptoms (brain inflammation) that will heal or be relearned later. If they are still high, I would talk with ur doc about what is next.

 

 

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??

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Just something small to add....just because your child may have some residual symptoms does not mean there is brain damage (even if it may end up occurring in some children). For some (especially for the young), perhaps their brain retrained itself in the wrong way, but this is also why at some point one may want to look into CBT or ERP and start retraining the brain the correct way of thinking again.

Edited by Vickie
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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...

 

 

From what I could understand from the test and from specialists around the world (I studied and lived in Paris and was also treated at NIMH) was that my body produces a low level of antibodies that continuously attack my brain. These were the antibodies that Cunningham measured (the anti-lysoganglioside, anti-tubulin etc. I don't have symptoms currently because the blood brain barrier is closed since I don't have a current strep infection. The specialists whom I've spoken with said there would not be anti-bodies if there weren't some form of intracellular strep that was resistant to antibiotics hiding in my body. The reason why I still have symptoms sometimes isn't because of brain damage but more because something is triggering a weakness in the blood brain barrier which is letting the antibodies interact with the basal ganglia. Once the barrier closes and the inflammation can go down, symptoms usually die down as well.

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Thanks, your response & the others below it are what I am hoping remains open to us even if the reduction in inflammation does not eliminate ds's "habits". At this point, the flare has been so bad for so long (~6mos now) that my poor guy says he can't even anticipate half of them anymore. He's not a good candidate for CBT/ERP right now for that reason if what I have read is accurate (& it does make sense). Perhaps if we can eliminate the inflammation, he WILL then be able to get rid of the "habits" with therapy.

 

Additionally, every person is different - so some heal better than others, etc. I just won't know till I know, ya know? :P

Grace, Don't loose hope, just becuz there may be some brain damage, it does not mean that it is not tolerable. Many people with brain lesions relearn behavior, retrain muscles etc..... The brain can be damaged and compensate in other ways. Many people have brain lesions with minimal residual symptoms. It can take years of retraining the brain but there are so many success stories from strokes, lupus, head trauma, MS where their mri's show damage but no symptoms are evident. My sis had part of her brain removed (now thats brain damage) when she had a tumor removed. Took several years but her brain compensated and she is 100%. I mean 100%. Preventing future attacks and quick treatments during an attack are the best we can do to prevent further issues and help our children heal!!!! I just do not think we should ever give the impression that this is a self limiting disease as my neurologist once told me. If we truly believe that this illness does not cause brain damage and does resolve with no side effects, then we are further justifying treating the symptoms only and ignoring the cause. Treatments like PEX adn IVIG are expensive and have risks and should not be offered to children whom have a self limiting disease with no potential for long term damage. It clearly is not self limiting for all and quick treatment is necessary and should be expected for our children to prevent brain damage.

 

 

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.

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Why do some kids after years of symptoms walk out of pex with no tics and others do not see symptom resolution for years. Leckman, also has a study showing kids with gross motor skills issues seem to have more long term issues with tics and ocd. What caused the gross motor skills issues and why did they not resolve. Retraining the brain is important afer any brain assault, whether it be a concussion, stroke, MS etc..... and PANDAS. I know cunningham does not State that there is no damage to the brain that could be caused from the inflammation. No doc can tell you that brain inflammation NEVER causes damage. Sometimes it does and sometimes it doesn't, retraining the brain after any assault is KEY.

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Why do some kids after years of symptoms walk out of pex with no tics and others do not see symptom resolution for years. Leckman, also has a study showing kids with gross motor skills issues seem to have more long term issues with tics and ocd. What caused the gross motor skills issues and why did they not resolve. Retraining the brain is important afer any brain assault, whether it be a concussion, stroke, MS etc..... and PANDAS. I know cunningham does not State that there is no damage to the brain that could be caused from the inflammation. No doc can tell you that brain inflammation NEVER causes damage. Sometimes it does and sometimes it doesn't, retraining the brain after any assault is KEY.

 

 

How do you retrain someones brain?

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My son had no gross motor skill or fine motor skill problems with his PANDAS and he was able to overcome the residual OCD rather quick once we started to retrain his brain. Perhaps there is a connection there as to why he was able to do that.

 

 

Why do some kids after years of symptoms walk out of pex with no tics and others do not see symptom resolution for years. Leckman, also has a study showing kids with gross motor skills issues seem to have more long term issues with tics and ocd. What caused the gross motor skills issues and why did they not resolve. Retraining the brain is important afer any brain assault, whether it be a concussion, stroke, MS etc..... and PANDAS. I know cunningham does not State that there is no damage to the brain that could be caused from the inflammation. No doc can tell you that brain inflammation NEVER causes damage. Sometimes it does and sometimes it doesn't, retraining the brain after any assault is KEY.

Edited by Vickie
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Well, I'll offer up my daughter as the poster child for how F'd up this disorder can make you after years of no treatment. She was afflicted in infancy, no real, effective treatment until age 15. So all her formative, developmental periods were affected. She had periods of time where she did learn well, but future exacerbations wiped out a great deal of what she learned. Right now she is very dysfunctional- cannot speak (but that seems to be mostly motor coordination), fine motor is very poor, huge anxiety issues.

The greatest improvement we've seen w/ treatment is in the area that was the biggest problem- those fight or flight reactions from out of nowhere that looked for all the world like demon possession. Those have been going on since she was 18 months old. In exacerbation she would spend 5-10 hours/day in this state- psych meds offered little relief.

Since starting PANDAS treatment, we've had periods of months w/ no F or F attacks, and we begin to see early childhood development during these periods. I've discovered there is a reason God made toddlers small! :P

Now, I just don't know if there is permanent brain damage or not. Normal development did not occur, but we see signs that it can still happen! Realistically, I know we are not going to end up with a "normal" adult. But, I plan to treat her as though she can fully recover because we just do not know how far she can go with recovery. We are working with an RDI (Relationship Development Intervention) consultant, because the RDI program focuses on brain development in a sequential, natural way. We may be looking at retrying some of the psych meds down the road- we could see some benefits now that there is less chaos in her brain. Such a strange journey we are traveling- no map, just a general direction.

Gosh, kinda lost my point in all that- but, I guess my opinion is that the human body/brain is an amazing entity with a great capacity for healing and repairing itself.

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Honestly speaking - does ANYONE really know? Swedo's first study is what - barely 20 years old. Has anyone done a LONG TERM follow up study on any of these kids to really see what happens down the road and determine if there is any long term damage? Considering the relatively short life that PANDAS has had as a dx, I don't think anyone can say conclusively at this point whether or not there is brain damage.

 

I'm not a doctor - or even one of our medically gifted gurus on the forum - but it would seem to me that until someone did a LONG TERM study following a group of PANDAS kids into adulthood to see if there were any long term effects I'm not sure any of us will really know.

 

Heck - for all we know, there isn't any apparent brain damage - but 50+ years from now we'll start seeing a correlation between PANDAS kids and early onset Alszhimers or something as a result of damage caused by the PANDAS that no one ever knew was there. The bottom line is that I just don't think anyone really KNOWS at this point - so all we have are various dr's theories based on what they've seen so far.

 

(And no - I've not heard or read of any connection between PANDAS and Alzhimers or any other brain disorder - I was just making a point that "damage" may not be seen for years to come...so I'm not trying to give anyone else something to freak out about B) )

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Why do some kids after years of symptoms walk out of pex with no tics and others do not see symptom resolution for years. Leckman, also has a study showing kids with gross motor skills issues seem to have more long term issues with tics and ocd. What caused the gross motor skills issues and why did they not resolve. Retraining the brain is important afer any brain assault, whether it be a concussion, stroke, MS etc..... and PANDAS. I know cunningham does not State that there is no damage to the brain that could be caused from the inflammation. No doc can tell you that brain inflammation NEVER causes damage. Sometimes it does and sometimes it doesn't, retraining the brain after any assault is KEY.

 

 

How do you retrain someones brain?

 

 

Furthermore, perhaps PEX didn't work for all kids the first time because the extent of their inflammation was all different. There have been cases where PEX needed to be followed with IVIG/steroids because the inflammation was so severe. Kids might still have symptoms due to environmental triggers. Even I still have problems with PANDAS sometimes, but I can correlate it exactly to an environmental trigger. (sickness/ allergies) Symptoms disapear right after the infection. - sometimes a steroid burst is needed.

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U can believe what u want. But inflammation causes brain damage sometimes. No doc will question that. Therapy physical and emotional can retrain someones brain. Ever see the monk study done about positive thoughts???? I do not understand why u think inflammation cannot cause neuron damage. Even migraines are seen on mri's. Why is this such a hard concept. Read my thread on Swedo's study, with the mri of the adolecent boy who had pex, had no more antibodies, no more mri inflammation and still had symptoms.

Why do some kids after years of symptoms walk out of pex with no tics and others do not see symptom resolution for years. Leckman, also has a study showing kids with gross motor skills issues seem to have more long term issues with tics and ocd. What caused the gross motor skills issues and why did they not resolve. Retraining the brain is important after any brain assault, whether it be a concussion, stroke, MS etc..... and PANDAS. I know cunningham does not State that there is no damage to the brain that could be caused from the inflammation. No doc can tell you that brain inflammation NEVER causes damage. Sometimes it does and sometimes it doesn't, retraining the brain after any assault is KEY.

 

 

How do you retrain someones brain?

 

 

Furthermore, perhaps PEX didn't work for all kids the first time because the extent of their inflammation was all different. There have been cases where PEX needed to be followed with IVIG/steroids because the inflammation was so severe. Kids might still have symptoms due to environmental triggers. Even I still have problems with PANDAS sometimes, but I can correlate it exactly to an environmental trigger. (sickness/ allergies) Symptoms disapear right after the infection. - sometimes a steroid burst is needed.

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Thats great. Vicki. Many kids resolve from pandas, even some without treatment.

My son had no gross motor skill or fine motor skill problems with his PANDAS and he was able to overcome the residual OCD rather quick once we started to retrain his brain. Perhaps there is a connection there as to why he was able to do that.

 

 

Why do some kids after years of symptoms walk out of pex with no tics and others do not see symptom resolution for years. Leckman, also has a study showing kids with gross motor skills issues seem to have more long term issues with tics and ocd. What caused the gross motor skills issues and why did they not resolve. Retraining the brain is important afer any brain assault, whether it be a concussion, stroke, MS etc..... and PANDAS. I know cunningham does not State that there is no damage to the brain that could be caused from the inflammation. No doc can tell you that brain inflammation NEVER causes damage. Sometimes it does and sometimes it doesn't, retraining the brain after any assault is KEY.

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