This statement, while not necessarily correct, scares me....

[eljomom]

I was reading a link on carcinocin from another thread in this forum and saw this:

 

"Typically, a child with undiagnosed PANDAS may be taken to the Psychologist and/or Paediatrician for treatment of an onset or exacerbation of ADHD symptoms, oppositional behaviours or OCD. Stimulant or anti-depressant medication may be prescribed and/or a behavioural intervention or counselling initiated. As the infection passes and the strep antibodies reduce, the symptoms gradually subside and parents and clinicians believe that the intervention was successful. However, when there is another strep infection, the symptoms return and the process is repeated. It is theorized that the brain is being continuously damaged by the repeated attacks by streptococcus antibodies, and after each attack the recovery of damaged brain tissues may not be complete. Eventually the child may develop a chronic psychiatric disorder."

 

This actually scares me so much, as this seems to be a pretty good description of my child---her symptoms sort of just started a couple years ago, and by June, after the high fever, have not stopped (ie., cumulative, permanent). Even though I believe hers "may" have started with strep, I think this could apply to other things too---viruses, other bacteria,etc...

[thereishope]

To my knowledge, there's no evidence that there can be permanent damage. Did she has a reference section after the article?

 

Here's this from Buster's Fact Sheet

http://www.latitudes.org/forums/index.php?showtopic=6266

Q: Does PANDAS cause permanent brain injury?

A: At present, it looks like exacerbations in PANDAS do not cause permanent harm to the brain. MRIs reveal no demyelization and while there are reports of enlargement of the basal ganglia (a part of the brain controlling fear, hunger, and motor skills), this seems to remit after treatment. We all certainly hope this is the case.

 

 

 

 

 

I was reading a link on carcinocin from another thread in this forum and saw this:

 

"Typically, a child with undiagnosed PANDAS may be taken to the Psychologist and/or Paediatrician for treatment of an onset or exacerbation of ADHD symptoms, oppositional behaviours or OCD. Stimulant or anti-depressant medication may be prescribed and/or a behavioural intervention or counselling initiated. As the infection passes and the strep antibodies reduce, the symptoms gradually subside and parents and clinicians believe that the intervention was successful. However, when there is another strep infection, the symptoms return and the process is repeated. It is theorized that the brain is being continuously damaged by the repeated attacks by streptococcus antibodies, and after each attack the recovery of damaged brain tissues may not be complete. Eventually the child may develop a chronic psychiatric disorder."

 

This actually scares me so much, as this seems to be a pretty good description of my child---her symptoms sort of just started a couple years ago, and by June, after the high fever, have not stopped (ie., cumulative, permanent). Even though I believe hers "may" have started with strep, I think this could apply to other things too---viruses, other bacteria,etc...

[airial95]

I've seen/read/heard similar statements before, and asked about them. From what our pediatrician and Dr. Murphy has told me as of right now - there really isn't any conclusive evidence of long term brain "damage". But, as with anything else PANDAS related, more research is needed.

 

With that being said, I was also told by our pediatrician, and therapists at Dr. Murphy's office that if left untreated, some of the psychiatric issues may linger - but not because of brain "damage" so to speak - it almost becomes a learned behavior (for lack of a better way of putting it). If a child has an unusual way of processing information (OCD for example) for years without any intervention or treatment (PANDAS or otherwise), that just becomes how they "operate".

 

Our therapist descirbed it similar to a drug addiction (she even said it was a reach so bear with me...it does sort of make sense). When a small child does a compulsion, they may not know why (often the case in OCD), they just know that performing this action makes them feel better, it relieves their anxiety (like a drug). If this action makes them feel "good", even after the source of the anxiety (OCD/PANDAS) is removed, they still associate that action with feeling "good" and will continue to do it, even if they don't need to, it still makes them feel "good". (Just like an addict will still use pain meds to feel good long after the source of the pain has been resolved.)

 

If they've always had intrusive thoughts or a particular way of processing the information as a result of the OCD, they may not know what's "normal" once the OCD starts to subside. That's why we're doing CBT/ERP therapy in addition to our PANDAS treatments. With our son being so young at onset (around 2), we've already seen how some of these rituals just become hard habits to break even as the other symptoms subside.

 

I have no idea if my rambling even made any sense - but it made sense to me when it was explained to me that way...

[Tenacity]

This scares me too. And I sure don't have all the answers. However, over the several-year-long course of my child's illness, what in the beginning fit a description of "classic PANDAS" has developed into something far worse: Sydenham's chorea and an array of debilitating neuropsychiatric symptoms that closely match the descriptions in the scientific literature of "encephalitis-lethargica-like syndrome" and "anti-NMDA-receptor encephalitis." I don't believe all these discrete diagnostic labels really refer to discrete conditions. Rather, I believe they refer to areas in a complex disease spectrum. The area in the spectrum which is generally referred to as "PANDAS" may include conditions which are treatable and reversible. The question in my mind is, if the disease progresses to the point where it looks like something even worse than "PANDAS," then what? . . .

[emmalily]

I think when reading these type of statements, we all need to remember how many parents on this board now believe they had PANDAS as a child/teen and how even without diagnosis or treatment they are healthy, functioning adults.

[Guest pandas16]

From everything that I have been told, there is no evidence of permanent brain damage in PANDAS. Doctors are thinking more along the lines that cytokines, leukocytes and macrophages cause a breach in the blood brain barrier which leads to antibodies causing problems with neuronal signaling. If there was permanent damage, I don't think kids would get better after immune treatments. OCD may not always go away immediately because it can be a learned behavior that requires ERP. There is a lot of information online that is incorrect about PANDAS- be careful what you read. It may be misleading.

Edited February 1, 2011 by pandas16

[T_Mom]

elijomom-- Can you share where that quote is coming from? --or the link?

 

I am curious if that was one of us or a researcher, or...?

 

Thank you-- and know that we all probably wonder. I am hopeful though--my d has been well before, and will be well again.

[PhillyPA]

My son just had his fourth ivig. I can tell you this - after each one he loses something and it is gone. This fourth one seems to be his absolute best. The tics and OCD are just gone after one week. Not all of his OCD but most of it. It is greatly, greatly softened. The question I have is will it hold and will he continue to improve? He lost his language at age 5. Today, one week after his ivig, I had a small conversation with him. The not talking is OCD. Will it hold, will it hold - I do not know. I have a pretty good feeling. I have a really good feeling...

 

From my perspective, the OCD in pandas can go away with the snap of the fingers. No therapy, no nothing. Just ivig and antibiotics. Maybe not for everyone - but it is definetely possible - I have seen it. And - my son is a long term case. He is 8(almost 9) years old and went 2.9 years without treatment.

[Phasmid]

Yay! So happy to read that, Philly!

Edited February 1, 2011 by Phasmid

[thereishope]

This is the link it's from http://hpathy.com/homeopathy-papers/pandas-%E2%80%93-a-carcinosin-case/

 

Unfortuantely, when you flip through articles written about PANDAS, you will occassionally see authors hinting about permanent damage or outright stating it. I've seen this happen a number of times. When I see them, I just think to myself that the author is trying to stress the importance of diagnosis and treatment and for a type of shock value perhaps.

 

elijomom-- Can you share where that quote is coming from? --or the link?

 

I am curious if that was one of us or a researcher, or...?

 

Thank you-- and know that we all probably wonder. I am hopeful though--my d has been well before, and will be well again.

Edited February 1, 2011 by Vickie

[Megs_Mom]

There is zippo research on long term damage, but certainly we have personally seem a complete remission from PANDAS symptoms for long periods. I would agree that if a child is treated quickly and heals very immediately, and does not have continual repeated exacerbations, then ERP would be an unnecessary additional step. However, if like many many of our kids, exacerbations are long, or if the child suffers while the medical treatment is on-going, then ERP can be a lifesaving tool. Some children may have some underlying subclinical OCD, and it may be even more helpful for them. After a while of being on the forum, black and white recommendations become tough to give - it's all about doing the absolute maximum that is needed to put that child in as good a place as they can be - in terms of basic happiness and functionality.

 

I was massively relieved to see my daughters "damage" reverse, even after multiple untreated severe exacerbations.

 

If there is NOT long term damage, and it is fully reversible, then how exciting is that! Again, there is no research outside of a few case studies, for adults who have suffered since they were young. I pray everyday, that this crazy time will result in help for some of the most treatment resistant adults with OCD as well. It is a horrible disease.

[eljomom]

Yes, that does make sense--thanks! I do wonder about the pathways causing tics though--this is what really worries me. Also, maybe there isn't "brain damage" per se, but neuro-processing damage??

 

 

I've seen/read/heard similar statements before, and asked about them. From what our pediatrician and Dr. Murphy has told me as of right now - there really isn't any conclusive evidence of long term brain "damage". But, as with anything else PANDAS related, more research is needed.

 

With that being said, I was also told by our pediatrician, and therapists at Dr. Murphy's office that if left untreated, some of the psychiatric issues may linger - but not because of brain "damage" so to speak - it almost becomes a learned behavior (for lack of a better way of putting it). If a child has an unusual way of processing information (OCD for example) for years without any intervention or treatment (PANDAS or otherwise), that just becomes how they "operate".

 

Our therapist descirbed it similar to a drug addiction (she even said it was a reach so bear with me...it does sort of make sense). When a small child does a compulsion, they may not know why (often the case in OCD), they just know that performing this action makes them feel better, it relieves their anxiety (like a drug). If this action makes them feel "good", even after the source of the anxiety (OCD/PANDAS) is removed, they still associate that action with feeling "good" and will continue to do it, even if they don't need to, it still makes them feel "good". (Just like an addict will still use pain meds to feel good long after the source of the pain has been resolved.)

 

If they've always had intrusive thoughts or a particular way of processing the information as a result of the OCD, they may not know what's "normal" once the OCD starts to subside. That's why we're doing CBT/ERP therapy in addition to our PANDAS treatments. With our son being so young at onset (around 2), we've already seen how some of these rituals just become hard habits to break even as the other symptoms subside.

 

I have no idea if my rambling even made any sense - but it made sense to me when it was explained to me that way...

[eljomom]

Yes--that is the source--I got the link from a post here about some other "treatment" for pandas...

 

My fear is that we did NOT treat quickly---this likely has been going on for YEARS!!!! DD7 was chronically ill (still don't know why IgG is normal)---repeated URI's, pneumonia, etc....and finally just stopped treating them for past few years --- fear of too much abx!! She's been quirky and sensory issues with clothing since a little one, and the germ ocd has been at least a couple years or more. Then added a couple tics/compulsions?? Then the explosion---so I can't even call it an "exacerbation" can I? As once the sudden 2-week onset of head to toe tics started, it has not stopped. So I do wonder---if it gets harder to treat the longer it goes on, it must be for a reason.

 

I am really, really in a knot. I watch her tic, and have a couple days here and there where I think "maybe it's getting better"--meaning she will not do the shoulder shrug---arm bend---arm straighten--nose wrinkle--mouth stretch--tongue curl--eye blink--eye roll all in order. Then within a few days, it's all back and something else is added---now the deep exhale and a repeated smile to the whole "routine." Then I think "am i NOT doing anything because she's mostly functioning and she doesn't complain about the tics?" IS that a reason to NOT do something else? Like steroids, ivig, pex?

[T_Mom]

To my knowledge, there's no evidence that there can be permanent damage. Did she has a reference section after the article?

 

Here's this from Buster's Fact Sheet

http://www.latitudes.org/forums/index.php?showtopic=6266

Q: Does PANDAS cause permanent brain injury?

A: At present, it looks like exacerbations in PANDAS do not cause permanent harm to the brain. MRIs reveal no demyelization and while there are reports of enlargement of the basal ganglia (a part of the brain controlling fear, hunger, and motor skills), this seems to remit after treatment. We all certainly hope this is the case.

 

 

 

 

 

I was reading a link on carcinocin from another thread in this forum and saw this:

 

"Typically, a child with undiagnosed PANDAS may be taken to the Psychologist and/or Paediatrician for treatment of an onset or exacerbation of ADHD symptoms, oppositional behaviours or OCD. Stimulant or anti-depressant medication may be prescribed and/or a behavioural intervention or counselling initiated. As the infection passes and the strep antibodies reduce, the symptoms gradually subside and parents and clinicians believe that the intervention was successful. However, when there is another strep infection, the symptoms return and the process is repeated. It is theorized that the brain is being continuously damaged by the repeated attacks by streptococcus antibodies, and after each attack the recovery of damaged brain tissues may not be complete. Eventually the child may develop a chronic psychiatric disorder."

 

This actually scares me so much, as this seems to be a pretty good description of my child---her symptoms sort of just started a couple years ago, and by June, after the high fever, have not stopped (ie., cumulative, permanent). Even though I believe hers "may" have started with strep, I think this could apply to other things too---viruses, other bacteria,etc...

 

 

Thanks for finding that Vickie--

I am disturbed by these 'online' experts setting themselves up as knowledgeable re: PANDAS! PITAND--or whatever we are going to end up calling it! Where is the backing to her statements? Write this one off as speculation only.

 

I know our older d was one of the MOST severe cases I have heard of (as far as symptoms)...after steroids and antibiotics she had a WONDERFUL A+ year last year--NO sign of any lasting effects (and this after being rendered helpless by OCD.

 

I am casting my vote with Buster--

[swim]

I can only think positively ... there cannot be permanent damage ... there is no proof of that ... instead we only have evidence that would support recovery.

 

My gut tells me we have to get all things right in the bodies of these kids - immune system working properly, inflammation under control, diet under control, yeast under control, make sure no leaky gut, proper vitamins, no hidden infections, etc. It seems to be a big puzzle with many pieces. Maybe that is why it is so hard to find the right combination for recovery.

 

This fight is not easy and it is only made harder by the fact that family/friends don't understand. Don't let yourself believe in the statement about permanent damage - believe that we can heal these kids. That is why we are all working together on this forum. We just need to keep fighting and we will get it figured out.