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"new baseline"---


eljomom
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Wow---very interesting explanation. That's what I like/need. I am curious about "no titers" rising with strep being from "prolonged infection"--do you mean like prolonged (hidden) strep that is still going on? Does that make sense? That would almost be grounds for tonsillectomy I would think. Hmmmm......

 

Also, Just Pandas (does she also mean Just Pitand?........like, just autoimmunity, period? vs. low immune or something? Our immuno. said the same thing...her immune system is great! She has nothing to indicate that she would keep a chronic infection.

 

Still considering seeing Murphy.......gotta hit the lottery first.

 

On a similar note, we saw the local immuno. for results of the very in-depth bloodwork (will post when i get a chance) and how he looked at B cells, NK cells, etc....and it was all "normal." I started crying, and he looked at me like I was nuts. Probably thinking Manchausen or something. My husband was angry with me to. COME ON!!! of course I'm happy that there is nothing "wrong" with her immune system (per se), but sometimes you just want SOMETHING to show up that you can FIX!!!

 

I went thorough this exact range of emotions when we met with our immunologist as well. My son has had 8 documented strep infections over the course of 18 months, yet not only has he never had an elvated titre, all of his immune work ups have come back normal. ("maddeningly normal" is what I like to call it.) Murphy's office finally referred us to immunology b/c they couldn't understand why his workups show that he shouldn't be getting strep...but BLAMMO it keeps showing up.

 

The immunologist she referred us to was wonderful, very PANDAS knowledgeable, and even said that she would rx IVIG for us, even with normal immune work ups, if and when Murphy says that's the way to go. (Apparently she's done it for some of Muprhy's other patients.)

 

She explained the normal bloodwork to me this way - our son is producing all of the appropriate antibodies, response well to immunizations, etc... The absence of elevated titres is more of an indicator that his immune system is getting the job done, and not "over reacting" to the infection (I know its also a sign of prolonged infection, but she was speaking to my sons results specifically). They way she described PANDAS is this: In PANDAS kids, the immune system produces the antibodies against strep, those antibodies mistake the brain for strep (we all know this), in some kids, the immune system creates more antibodies than it needs (elevated titres) or there are other immune difficienies contributing to the PANDAS. In a "just PANDAS" case like ours, the problem lies in the actual antibodies themselves being produced by they body - they're defective in some way. But since the immune system is making them appropriately in response to the infection, everything appears normal. She said that since there's no tests to check for "broken" antibodies, that's what makes "just PANDAS" difficult to pinpoint and treat.

 

I thought her explination made sense, but there was a small part of me hoping for something to be amiss so we had another piece of the puzzle. She was great, but she sort of got to me when she said after reviewing the bloodwork and giving a brief exam to my son, "Everything from an immunology standpoint looks great, wonderful. Fortunately, you're dealing with just PANDAS". Really?? JUST PANDAS???? Like that's not enough - as my son was tearing apart her office cause he was in an episode!!

 

Hope this helps you feel better about wanting something to be wrong!

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I don't think "new baseline" and "chronic PANDAS" are the same thing. My son had what I would call "chronic PANDAS" for 2 years straight while he had a hidden infection. During that time he had lots of OCD, executive function problems, brain fog,changes in muscle tone and coordination, joint pain, and urinary frequency, with occasional tics. We found the infection- had surgery to clear it- and slowly (over the course of about 3 months) he showed improvement until we got to what I would call a "new baseline". The "new baseline" consisted of some executive function problems with organization, keeping track of assignments, and deteriorated handwriting. There was no more OCD, no urinary frequency, no joint pain, no brain fog, and no tics. Just frustrating organization and handwriting problems that we addressed with accommodations and therapy to work on it.

 

IMHO, "chronic Pandas" can also refer to the ongoing autoimmune response that can occur even after the infection is gone. In my son's case, he had a prednisone taper shortly before the surgery, so that may have helped to alleviate the autoimmune response.

 

 

I am also seeing posts on here about not treating kids who have had PANDAS too long. My son had 13 years of PANDAS attacking his brain before we started on the right path. It has been a difficult and complicated journey (much more than what I just posted above) - one that I would not wish on anyone... but he is happy and healthy now. He has no tics, few rituals, and functions in school with the help of some very wonderful teachers to point him in the right direction. He has friends, goes to the skatepark, and is trying to decide what he wants to be when he finishes High School. IVIG has kept him infection -free and as long as this lasts, I think he has a shot at recovering brain function.

I do believe that untreated PANDAS can cause long-term changes in the brain. I also believe that education and therapy can allow other parts of the brain to take over and our kids can regain function - even after a "new baseline" if we can stop the autoimmune process and keep them healthy. JMHO.

 

""chronic Pandas" can also refer to the ongoing autoimmune response that can occur even after the infection is gone. In my son's case, he had a prednisone taper shortly before the surgery, so that may have helped to alleviate the autoimmune response. " Kimballot---do you think steroids can help this "ongoing autoimmune response" even after years of "chronic pandas?"

 

 

 

This scares me so much...the long-term changes in the brain from untreated pandas. Why don't doctors (even cunningham) say this? Why do they claim that the brain isn't "damaged" as the heart is in rheumatic fever?

Edited by eljomom
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This scares me so much...the long-term changes in the brain from untreated pandas. Why don't doctors (even cunningham) say this? Why do they claim that the brain isn't "damaged" as the heart is in rheumatic fever?

 

 

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.

Edited by kimballot
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This scares me so much...the long-term changes in the brain from untreated pandas. Why don't doctors (even cunningham) say this? Why do they claim that the brain isn't "damaged" as the heart is in rheumatic fever?

 

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.

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This scares me so much...the long-term changes in the brain from untreated pandas. Why don't doctors (even cunningham) say this? Why do they claim that the brain isn't "damaged" as the heart is in rheumatic fever?

 

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.

 

Yes, Peg - I think you are correct about critical periods. We have so much to learn.

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I'm not sure what a ped would prescribe for poison ivy, but you are looking to be convinced and to convince your hubby. Dr. K does a 5 day steroid burst that is low dose; he looks for any change in symptoms, possibly worse first/ hyper, then some improvement. The amount of improvement doesn't matter. You're looking for confirmation of autoimmunity.

 

I know it's hard to get over the expert in your own back yard not being your knight in shining armor. I'm in Philadelphia. It was hard for me to read Beesknees praises of Elia and CHOP when she helped us with diagnosis, but unhelpful for treatment bcs my dd had already been sick "too long."

But I was way more desperate than you are now. Once I got the vibe Elia was dragging her feet on treatment, I already had appts lined up with doc #2, then doc #3, and now I'm on doc # 4. Call it the pandas walk of shame if you want :ph34r: I was a momma on a mission.

 

PS- Bees, I'm over it, btw. Just trying to illustrate a point. I'm very happy for your child's health!

 

 

Haha...same boat we were in with CHOP and Elia (I'm really glad beesknees that you got such good help there, though.) Just to note that I agree with JAG...we actually have 4 docs simulataneously (Peds Neuro, Immuno, DAN and Lyme.) When we started this process several years ago...there were no docs that I knew of, and I finally found 1 in NJ who, although, diagnosing DS (after 4 years of having gone from doctor to doctor), only sporadically treated DS, and as a result DS got horrendously worse.) NJ doc was way closer than all the other PANDAS docs, but he wasn't right for us. We moved on. Now we deal with our team of docs (and, yes, they do all know about each other.) I never thought I would have to deal with so many docs, but the reality is that this is a very complicated disorder.

 

PANS is a horrible beast. It not only affects the child, but the whole family. I was going crazy (literally) when I couldn't get help. I still go crazy someitmes (like tonight when I had a heart to heart with DS15 about how this is just as hard on me and DH and his brother, who also has PANS as it is on him, and that I also get very depressed sometimes. But that we have to work together.)

 

If you are not confident in the doctor that you are seeing, you need to find another doctor. I also didn't think that I would resort to IVIG. Then I realized that PANS was just way bigger than I was, and now I've tried it all. And, I'm glad I did and am continuing to do so.

 

Do what feels right to you. But, don't every say never. You'd be surprised how your feelings may change as time goes on.

 

Good luck with whatever you decide on this.

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peglem - just wondering how things are with your daughter at the moment?

Hard to say-variable, I guess. She was recently dx'd w/ autoimmune hypothyroidism and started synthroid last Friday. We've seen slight improvements with that, but still has intermittent problems with her hands- sometimes looks like cerebral palsy the way she holds them all curled up in front of her shoulder. She sometimes will not use them, and I wonder if she's having numbness and tingling. It just seems like every time we start moving in the right direction, something else pops up.

 

We've got a neurology referral in the works (again). I've got to try to get some of this stuff on film because we have to use valium in order to get her into an office for an exam and that makes her present differently than what we see at home.

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peglem - sorry things aren't better than they are at the moment. Hoping that the thyroid treatment gets her some relief.

 

Has your talked about Cytomel, the T3 replacement as well. I'm aware there is some controversy in the thyroid dr world re T4 or T4 and T3 replacement but I would be climbing the walls without my T3.. I'm only borderline low but the T3 bit is what scrapes me up off the ground emotionally...it knocked out my nail biting (trich?), postnatal "survivalist" type OCDishness (best not to ask) and also got me back to the now, rather than living in my head/living in the future/lots of planning type stuff.

 

Hope you see some improvments soon...

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peglem - sorry things aren't better than they are at the moment. Hoping that the thyroid treatment gets her some relief.

 

Has your talked about Cytomel, the T3 replacement as well. I'm aware there is some controversy in the thyroid dr world re T4 or T4 and T3 replacement but I would be climbing the walls without my T3.. I'm only borderline low but the T3 bit is what scrapes me up off the ground emotionally...it knocked out my nail biting (trich?), postnatal "survivalist" type OCDishness (best not to ask) and also got me back to the now, rather than living in my head/living in the future/lots of planning type stuff.

 

Hope you see some improvments soon...

Great you've found something to help. I am so afraid of rocking the boat w/ any doctor who seems willing to help. Maybe i could bring that up once a relationship w/ the endo has been formed. I've got a serious problem w/ being leery of doctors- just too many of them won't/don't help. I was so thrilled when this endo did not blow us off!

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Wow---very interesting explanation. That's what I like/need. I am curious about "no titers" rising with strep being from "prolonged infection"--do you mean like prolonged (hidden) strep that is still going on? Does that make sense? That would almost be grounds for tonsillectomy I would think. Hmmmm......

 

Also, Just Pandas (does she also mean Just Pitand?........like, just autoimmunity, period? vs. low immune or something? Our immuno. said the same thing...her immune system is great! She has nothing to indicate that she would keep a chronic infection.

 

Still considering seeing Murphy.......gotta hit the lottery first.

 

On a similar note, we saw the local immuno. for results of the very in-depth bloodwork (will post when i get a chance) and how he looked at B cells, NK cells, etc....and it was all "normal." I started crying, and he looked at me like I was nuts. Probably thinking Manchausen or something. My husband was angry with me to. COME ON!!! of course I'm happy that there is nothing "wrong" with her immune system (per se), but sometimes you just want SOMETHING to show up that you can FIX!!!

 

I went thorough this exact range of emotions when we met with our immunologist as well. My son has had 8 documented strep infections over the course of 18 months, yet not only has he never had an elvated titre, all of his immune work ups have come back normal. ("maddeningly normal" is what I like to call it.) Murphy's office finally referred us to immunology b/c they couldn't understand why his workups show that he shouldn't be getting strep...but BLAMMO it keeps showing up.

 

The immunologist she referred us to was wonderful, very PANDAS knowledgeable, and even said that she would rx IVIG for us, even with normal immune work ups, if and when Murphy says that's the way to go. (Apparently she's done it for some of Muprhy's other patients.)

 

She explained the normal bloodwork to me this way - our son is producing all of the appropriate antibodies, response well to immunizations, etc... The absence of elevated titres is more of an indicator that his immune system is getting the job done, and not "over reacting" to the infection (I know its also a sign of prolonged infection, but she was speaking to my sons results specifically). They way she described PANDAS is this: In PANDAS kids, the immune system produces the antibodies against strep, those antibodies mistake the brain for strep (we all know this), in some kids, the immune system creates more antibodies than it needs (elevated titres) or there are other immune difficienies contributing to the PANDAS. In a "just PANDAS" case like ours, the problem lies in the actual antibodies themselves being produced by they body - they're defective in some way. But since the immune system is making them appropriately in response to the infection, everything appears normal. She said that since there's no tests to check for "broken" antibodies, that's what makes "just PANDAS" difficult to pinpoint and treat.

 

I thought her explination made sense, but there was a small part of me hoping for something to be amiss so we had another piece of the puzzle. She was great, but she sort of got to me when she said after reviewing the bloodwork and giving a brief exam to my son, "Everything from an immunology standpoint looks great, wonderful. Fortunately, you're dealing with just PANDAS". Really?? JUST PANDAS???? Like that's not enough - as my son was tearing apart her office cause he was in an episode!!

 

Hope this helps you feel better about wanting something to be wrong!

 

Maybe prolonged wasn't the right word to use...untreated would've been better maybe? We've been lucky to have Muprhy local, she's been a great addition to our team, but I have to be honest - our pediatrician is our lifeline! I can't tell you how wonderful it is to have a PANDAS friendly pediatrician...90 days minimum abx rx at first sign of infection!

Edited by airial95
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pandas16- I disagree. I think this is exactly what a forum is about- discussing questions/opinions form the person's (or parent) perspective. It's not a forum of Physicians giving their feedback.

 

Even my 10 year old knows not to trust everything you read online, whether it be an advertisement, forum, solicitation! You then research yourself!

Edited by philamom
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Pandas16 - I think you are confusing Philamom with me...who has added nothing to this post...who also thinks that you are confusing several different posters. I don't recall ever using the words udder nonsense, but check my posts again because my memory is very bad. I did post something mentioning my physician husband who was sick of me on the forums.

 

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

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For Goodness Sakes, are we going to argue on every post here people? I thought this was a support board where we come to get (and give) information about our experiences with this horrible disease. I do not come here expecting medical advice, but I do come here expecting respect and compassion from my fellow PANS parents who should understand better than anyone else the stress and anguish that comes with trying to deal with this hideous illness. Whatever your question or problem is regarding your sick child I believe you are welcome to come here for advice and comfort. You are also welcome to reject anything you hear(read)as nonsense or embrace it as applicable to your situation. I do not believe though that we are here to ridicule and judge each other's posts and opinions. I love this board and everything it represents as well as all the awesome parents here. Please, can we not drag this board down with bickering? If it can not be stated respectfully, please do not post.

 

With Deep Sincerity,

Dedee

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See, I thought I was just stating my opinion, without being rude. It wasn't a personal attack on anyone - just my opinion. I appreciate the questions people are posting - sorry I offended you pandas 16.

 

And sorry, PhillyPA, that I added nothing to the post!

 

I just fear that when we are ridiculed for sharing our experiences or asking questions - we will not speak up at all.

Edited by philamom
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