Jump to content
ACN Latitudes Forums

"new baseline"---


eljomom
 Share

Recommended Posts

I don't think the autoimmune process itself leads to specific brain damage (as it does with the heart), but I do think there are 2 other processes that may result in long-term changes (notice I did not say damage)

 

1. the brain has plasticity - meaning that it is able to change function based on experience. If a child experiences OCD compulsions or other unusual thought patterns, it may be difficult to "undo" this process - even after the antibodies have stopped making extra cam Kinase. Difficult does not mean impossible. It means that you would need therapy to "undo" the thinking.

 

2. The inflammation in the basal ganglia (or other brain structures) could (potentially), if left long enough, put pressure on some of the small blood vessels in the brain, which might cut off oxygen to some cells and result in some cells dying. NOw the good news about this is that the brain does have plasticity, so there is the potential to have other cells take over - but it will take time and a commitment to therapy.

 

Thanks, Kimballot, for putting it so clearly and succinctly. Having "dealt" as best we could with a "regular OCD" diagnosis for more than 6 years before we got any PANDAS assistance whatsoever, I do think my DS's future probably looks a little different than does that of kids who are diagnosed and treated considerably quicker. And I think that is likely to be the case no matter what we do with his immune system from this point forward.

 

That being said, the brain is a remarkable and still mysterious organ, no matter how much some doctors may try to make us think they've got it all figured out, and I fully believe my DS has already built and will continue to build new, potentially even BETTER pathways, to replace those that are either on the fritz or potentially "shattered" by lack of at least one treatment modality (abx) he clearly could've used all those years!

Link to comment
Share on other sites

  • Replies 46
  • Created
  • Last Reply

Top Posters In This Topic

For the record both my husband and I agree, doctor's don't know everything. Far from it!

 

My dad (who's had his own share of medical issues) says that's why they call it "practicing medicine." He says "they're practicing on YOU!" :lol:

Link to comment
Share on other sites

Philamom,forgive my bad grammar. I was actually referring to myself as to being the person who added nothing to this particular thread, not you. I am sorry. It read wrong. It was my intention to correct pandas16 mistake, not put you down. You, philamom, are a superstar and I love what you add to the forum.

 

I am exhausted by all of this. I need a break.

Link to comment
Share on other sites

Philamom,forgive my bad grammar. I was actually referring to myself as to being the person who added nothing to this particular thread, not you. I am sorry. It read wrong. It was my intention to correct pandas16 mistake, not put you down. You, philamom, are a superstar and I love what you add to the forum.

 

I am exhausted by all of this. I need a break.

Actually - I read it wrong...it's time for a coffee break! You are a superstar MOM too!! :wub:

Edited by philamom
Link to comment
Share on other sites

I don't think any one knows for sure. In sitting with the scientists from Cunningham's lab in Texas at dinner, one mentioned that this area of study was less interesting for him if it is"only a signaling problem" (which it appears it MAY be) because it's is a less compelling area than something that actually damages your brain - like MS (another autoimmune disease - which does actual damage the brain permanently. )

 

And, when I look at the numbers - most kids don't go all the way back to 100% in the studies. We all can, and should, try to get our kids there - but after the infection is gone, and the Auto-antibodies have been removed, CBT has been used...some of kids still have symptoms, and/or they catch some thing that makes them re - exacerbate. (because the genetics, or the immune issue or whatever it is, is still there in your child) I hope for 100% remission. Cured? Maybe as adults - but no one knows that either! (Swedo told me her original 50 pandas patients were fine as adults - but her anecdotal info isn't an actually survey, and her idea of "fine" or "better" and my idea of 100% are most likely different!

 

In SC, I have read a study that a percentage of adults still had some OCD, that began with the SC, and that is what pandas is based upon, but these kids don't usually get intervention beyond antibiotics and sometimes phych meds.

 

But the good new is that SOME kids do go back to 100%, and MOST are able to get back sub-clinical symptoms, and that CBT works as well. And, we don't know what percent will end up with refractory OCD, maybe none of them will.

Link to comment
Share on other sites

Our therapist and pediatrician had a good way of describing the potential "permanant" OCD. I'll use one of my son's habits as an example.

 

He used to have to line up the bucket of trains at day care before we were able to leave. If he didn't line them up exactly right, in the right order (or heaven forbid another child came over to play with them!!) we had to start over/meltdown of epic proportions that would last until bed time. We noticed that this was one of the OCD rituals that didn't improve with the abx (all of his other symptoms did, except for 3 distinct rituals). Our pediatrician basically described it as more of a "learned" behavior than true OCD. Since so many new neural pathways are formed in kids everyday (especially little guys like my son), linig up the trains just became the "normal" way to leave day care everyday, sort of like washing your hands after using the restroom, or turning off the lights when you leave a room. It's just something he's always done so is normal to him. (Our pediatrician, while he can't say for sure, did say the same may be true for certain PANDAS related tics - it just becomes their "normal")

 

When we started therapy, the therapist reiterated the "learned behavior" idea, and used the analogy of a drug addict. Someone starts using pain pills because they have an injury and are in pain, over time, the pain goes away, but they continue to use the pills because it makes them feel good, - to the point where if they DON'T use the drugs, they will feel bad, so they continue to use the pills - even in the abscence of the actual pain - to prevent from feeling bad. (A very simplified analogy that ignores the actual physical addition, I know, but it makes the point). For our son, he started lining up trains because it relieved anxiety and made him feel better, he knew that if he didn't line up the trains it would make him feel bad. After the cause of the anxiety was eliminated (the strep/PANDAS), it didn't matter if he didn't feel the anxiety anymore, in his mind - lining up the trains feels good, not lining up the trains feels bad - it's a simple choice.

 

That's where the CBE/ERP came in. I think the longer the episode, the more engrained the OCD habits can become. I'm happy to report that with the therapy we've broken all of our original pesky habits. With subsequent infections, we've had new things pop up, but in between infections, we've always managed to combat it with the therpay techniques once the initial onslaught subsides.

 

To me, that's one of the reasons I've always thought that the early intervention was important. If we can get the kids back to 100% physically as quickly as possible, the long term effects of the residual OCD may be easier to fight back. It's also a reason why I believe therapy is a useful tool for our kids - even if it won't work when they're actively under attack.

Link to comment
Share on other sites

Would like to ask a knowledgeable doctor...thought I WAS asking one...never got answers. Just hoping maybe someone else had asked their doctor, or heard a speaker talk about it at the symposium, or had asked cunningham or swedo or anyone. I'm not looking for "personal experiences" here or opinions. Facts from docs or experts.

 

 

My opinion is that the autoimmune "attack" is different. In RF (and many other autoimmune diseases) antibodies directly attack and destroy tissue. In PANDAS, the antibodies interact w/ receptors, disrupting function, which can have an effect on learning and the development of brain "pathways". I think my child has permanent problems due to untreated PANDAS during critical periods of development, so some pathways that would have developed, did not. There is no detectable damage to her actual brain tissue, just a lack of neural connections.

 

 

I also feel like this is innapropriate to post. This is complete speculation and to say that untreated PANDAS is early childhood is nothing more than Autism will really scare parents.

 

 

I have heard the term "new baseline" on here quite frequently. I believe that our dd has "chronic pans"---in other words, a "new baseline." Thinking those terms might be interchangeable. So if a child has a new baseline, and then gets worse with exposure, infections, injuries, etc.....then goes back to "new baseline" or "chronic" state, but less severe, is this "new baseline" the best we can hope for? I don't mean to sound defeatist, and I know there are some, myself included, who will not settle for less than "perfect"---but in all seriousness, we are doing nothing right now, other than once daily keflex, with ME running the ship since pandas doc will not do anything else unless we pull tonsils. She is NOT 100%, but is at her baseline of new normal (daily tics, compulsions) but not NONSTOP. Wondering if anything was spoken about this at the TExas Symposium too?

 

Honenstly, I really think questions like these should be avoided because no one here has the proper credentials to answer them. Furthermore, the discussion will most likely only present people with teh incorrect information and scare them. You should really just ask a knowledgeable docotor.

Edited by eljomom
Link to comment
Share on other sites

Sorry....I didn't post my last response with the quotes in the right spot, so my last response was in response to:

 

"Honenstly, I really think questions like these should be avoided because no one here has the proper credentials to answer them. Furthermore, the discussion will most likely only present people with teh incorrect information and scare them. You should really just ask a knowledgeable docotor."

 

With as many of us seeing so-called pandas experts on here, some more than one, I would think that I could ask these kinds of questions in hopes that someone has asked the same question to their doc, and gotten a knowledgeable reply...that's all.....

 

.....well, time to get ready to deliver some puppies............mamma is due any time now.

Link to comment
Share on other sites

My opinion is that the autoimmune "attack" is different. In RF (and many other autoimmune diseases) antibodies directly attack and destroy tissue. In PANDAS, the antibodies interact w/ receptors, disrupting function, which can have an effect on learning and the development of brain "pathways". I think my child has permanent problems due to untreated PANDAS during critical periods of development, so some pathways that would have developed, did not. There is no detectable damage to her actual brain tissue, just a lack of neural connections.

 

 

I also feel like this is innapropriate to post. This is complete speculation and to say that untreated PANDAS is early childhood is nothing more than Autism will really scare parents.

 

 

I have heard the term "new baseline" on here quite frequently. I believe that our dd has "chronic pans"---in other words, a "new baseline." Thinking those terms might be interchangeable. So if a child has a new baseline, and then gets worse with exposure, infections, injuries, etc.....then goes back to "new baseline" or "chronic" state, but less severe, is this "new baseline" the best we can hope for? I don't mean to sound defeatist, and I know there are some, myself included, who will not settle for less than "perfect"---but in all seriousness, we are doing nothing right now, other than once daily keflex, with ME running the ship since pandas doc will not do anything else unless we pull tonsils. She is NOT 100%, but is at her baseline of new normal (daily tics, compulsions) but not NONSTOP. Wondering if anything was spoken about this at the TExas Symposium too?

 

Honenstly, I really think questions like these should be avoided because no one here has the proper credentials to answer them. Furthermore, the discussion will most likely only present people with teh incorrect information and scare them. You should really just ask a knowledgeable docotor.

Well, I certainly apologize if my post scared or upset anyone. I very deliberately stated that it was my opinion, and what I think happened in my experience.

Seroiusly, my daughter's condition has me very stressed and isolated. I try to be very careful what I say in my posts. You'll not find me stating anything as fact that does not have a scientific basis or a citation to back it up.

Truthfully, my experiences w/ my daughter are extremely different from most people on this forum and I try not to post anything unless I think it may have some relavence for others. I have no problem with others correcting my information if I've said something untrue or even having people disagree with what I've said, but, I feel bad when people want to muzzle what little I do contribute.

 

Edited to respond to this from Eljomom:

Would like to ask a knowledgeable doctor...thought I WAS asking one...never got answers. Just hoping maybe someone else had asked their doctor, or heard a speaker talk about it at the symposium, or had asked cunningham or swedo or anyone. I'm not looking for "personal experiences" here or opinions. Facts from docs or experts.

When my pediatrician talked to Dr.'s Cunningham and Latimer a few years ago, he asked about if brain tissue was being destroyed (because he and I had discussed this- if there was already too much damage to the brain) and their opinion at that time was that PANDAS does not attack and destroy basal ganglia tissue, just interferes with signaling. That's what my opinion was based on.

Edited by peglem
Link to comment
Share on other sites

peglem----I didn't for a minute think that what you were saying was "to say that untreated PANDAS is early childhood is nothing more than Autism." I appreciate your input, and didn't take that away from your post at all. I do think perhaps (TOTAL OPINION HERE!!!) more kids with autism are being diagnosed with pandas because they are generally in the care a of a doctor/doctors, and DAN!'s, who tend to think outside the box a bit better than our mainstream docs the non-autistic kids rely on.....just opinion and speculation here.....

Link to comment
Share on other sites

peglem----I didn't for a minute think that what you were saying was "to say that untreated PANDAS is early childhood is nothing more than Autism." I appreciate your input, and didn't take that away from your post at all. I do think perhaps (TOTAL OPINION HERE!!!) more kids with autism are being diagnosed with pandas because they are generally in the care a of a doctor/doctors, and DAN!'s, who tend to think outside the box a bit better than our mainstream docs the non-autistic kids rely on.....just opinion and speculation here.....

I know. Just wanted you to know that what I said was based on info that did come from knowledgeable docs.

Link to comment
Share on other sites

Peg- you are an inspiration to all of us. Even if your daughter's condition is not the same, we can ALL learn a great deal from you in how to parent a child through difficult times.

 

Pandas 16- is actually the person with pandas, not the parent. She has strong opinions, and a great deal of experience and information to offer all of us.

 

I agree with (I think it was Mom with ocd son) in that the major impact of "permanent damage" is not really permanent, physical or structural- it is learned. We have seen this with my kids over and over. If a child has undiagnosed or improperly treated pandas, starting at a young age, and having either several episodes or long term episodes- undoing that "learning will be a major challenge". My kids have had severe-ish episodes, but have been aggressively treated within a month, and still have had to spend a little time (therapy) "unlearning".

 

I may be in the minority, but I am ok with the arguing. I look at it in two ways- we are a family here- a family can and will fight, sometimes over serious stuff, sometimes over nothing- but the bottom line is they will make up- and they are really THERE for each other. I think the fighting comes in that we are all very passionate (not to mention stressed) and really want to help.

 

Also- we are all learning and growing- and real growth does not come without some pain :(

 

So- let's argue! We should probably just keep it to the facts, or experiences, and not personal or inflammatory remarks.

Link to comment
Share on other sites

Wanted to say, too, that I highly value pandas16 sharing her experiences from the patient viewpoint, especially since my child cannot share her viewpoint with me. Other people's experiences help me to make sense out of what she is trying to communicate sometimes.

 

Thanks for the parenting compliment- I sure don't feel like a great parent most of the time. Lately I've just been feeling very old and worn out. Just treading water, frequently going under and so uncertain how things will end up for my daughter. I'm going to keep trying though...maybe something or someone will come along who can help.

Link to comment
Share on other sites

peglem----I didn't for a minute think that what you were saying was "to say that untreated PANDAS is early childhood is nothing more than Autism." I appreciate your input, and didn't take that away from your post at all. I do think perhaps (TOTAL OPINION HERE!!!) more kids with autism are being diagnosed with pandas because they are generally in the care a of a doctor/doctors, and DAN!'s, who tend to think outside the box a bit better than our mainstream docs the non-autistic kids rely on.....just opinion and speculation here.....

 

My pediatrician and I had a discussion about this. My sons onset was at 20 months old, with dx at 26 months. His symptoms looked a lot like autism. We came to the very unscientific conclusion to our discussion that there are probably many PANDAS kids misdiagnosed as autism since most docs aren't familiar enough with PANDAS to think about it and even if theynare, the previous belief was that it didn't onset until later.

Link to comment
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
 Share


×
×
  • Create New...