Did anyone's child develop autism after PANDAS?

[bws]

I fel awful Son PANDAS 4 yrs 10 months. now 8 full blown PDD but we feel uncontrolled PANDAS. WE kept banging head against wall with ABX that did nto work T & A that did nto work. Still 8 and cannot get help. I feel PANDAS IS trigger "autism like symptoms" We are lost; I know what to do; but to find help iN AZ another story...(biomed)

 

Have you looked into Dr. Doris Rapp?

[peglem]

Peglem can you share a little bit more about what you've learned with pandas interfering in early development?

 

So basically if you got it while you were older, you're in the clear?

When this forum began, I was struck by the similarities between the symptoms people described for PANDAS and what I knew about autism from many years already involved with that community.

 

When PANDAS was discovered in my daughter, I sought to understand what exactly PANDAS was doing to her brain. The info I was getting, while not conclusive (but the opinion of Dr.s Cunningham and Latimer, as related to our pediatrician), was that the antibodies were causing false signaling in the basal ganglia, but not destroying tissue. Then, looking, in hindsight, at my daughter's abnormal development (she was my 4th child and I've taken courses in early childhood development, so know what should have happened), it just makes sense that the pathways and connections she was making were grossly affected. She was not treated until she was over 10yrs old- very little normal development occurred- so baseline is still pretty wanky behaviorwise- I think that's because she doesn't have the pathways laid down to revert back to.

 

I think (just my opinion) that if you get it later, you'll still have to deal with whatever erroneous pathways and connections have been made during an episode (like residual OCD), but the older pathways are still there and can be accessed and restrengthened.

 

Also, if you look at the function of the basal ganglia- sensory signals coming from the body go through it to the brain and the basal ganglia fine-tunes or modulates the signals going back out to the body to act upon the incoming info. So, you can see how false signaling in either or both directions could really mess things up. Just take handwriting for instance, the visual signal goes through the basal ganglia (as well as the touch sensation of fingers on pencil/paper)and the signal from the brain responds with instructions of how far and what direction to move the pencil, how tightly to hold the pencil, etc. The basal ganglia simultaneously compares the incoming and outgoing signals and adjusts the outgoing signal to match the incoming. See how this could mess up a child's handwriting during a PANDAS episode? But, what happens when the child tries to learn to write during a PANDAS episode? My guess is the brain lays down some pretty bizarre learning/memory pathways. When the episode is over- the child with previously normal pathways, has those to go back to. But the child with only the bizarro pathways has nothing to go back to.

[MomWithOCDSon]

Years later we met Dr K and he told me that it was a BS diagnosis. After reviewing family history and having rheumatic fever on both mom and dads side, it became clear. When DS is in a good spot, he's never 100%, but I have seen the miracle of the steroid burst and IVIG and that's what keeps me going.

 

Thanks for listening!

 

Ann

 

 

I feel the same way about abx . . . I don't know where we'd be today without that and this forum for all the anti-inflammatory and immune modulatory information and support.

 

I didn't mean to sound like Debbie Downer earlier. I think I'm just trying to acclimatize myself to what might possibly be a "new normal" in our house, at least through adolescence. Though, I have to say, I do believe that time and ongoing maturity have every possibility of correcting the delays of the past. I get a glimpse of that every now and then, for which I'm grateful. And I'm in no way ready to throw my hands up in the air and accept "defeat" at the hands of whatever developmental delays may have occurred during DS's untreated childhood.

 

We'll continue to fight the good fight.

[cab40]

Hi everyone is a debie downer sometimes!

Edited March 23, 2012 by cab40

[cab40]

Peglem can you share a little bit more about what you've learned with pandas interfering in early development?

 

So basically if you got it while you were older, you're in the clear?

When this forum began, I was struck by the similarities between the symptoms people described for PANDAS and what I knew about autism from many years already involved with that community.

 

When PANDAS was discovered in my daughter, I sought to understand what exactly PANDAS was doing to her brain. The info I was getting, while not conclusive (but the opinion of Dr.s Cunningham and Latimer, as related to our pediatrician), was that the antibodies were causing false signaling in the basal ganglia, but not destroying tissue. Then, looking, in hindsight, at my daughter's abnormal development (she was my 4th child and I've taken courses in early childhood development, so know what should have happened), it just makes sense that the pathways and connections she was making were grossly affected. She was not treated until she was over 10yrs old- very little normal development occurred- so baseline is still pretty wanky behaviorwise- I think that's because she doesn't have the pathways laid down to revert back to.

 

I think (just my opinion) that if you get it later, you'll still have to deal with whatever erroneous pathways and connections have been made during an episode (like residual OCD), but the older pathways are still there and can be accessed and restrengthened.

 

Also, if you look at the function of the basal ganglia- sensory signals coming from the body go through it to the brain and the basal ganglia fine-tunes or modulates the signals going back out to the body to act upon the incoming info. So, you can see how false signaling in either or both directions could really mess things up. Just take handwriting for instance, the visual signal goes through the basal ganglia (as well as the touch sensation of fingers on pencil/paper)and the signal from the brain responds with instructions of how far and what direction to move the pencil, how tightly to hold the pencil, etc. The basal ganglia simultaneously compares the incoming and outgoing signals and adjusts the outgoing signal to match the incoming. See how this could mess up a child's handwriting during a PANDAS episode? But, what happens when the child tries to learn to write during a PANDAS episode? My guess is the brain lays down some pretty bizarre learning/memory pathways. When the episode is over- the child with previously normal pathways, has those to go back to. But the child with only the bizarro pathways has nothing to go back to.

[cab40]

Peglem can you share a little bit more about what you've learned with pandas interfering in early development?

 

So basically if you got it while you were older, you're in the clear?

When this forum began, I was struck by the similarities between the symptoms people described for PANDAS and what I knew about autism from many years already involved with that community.

 

When PANDAS was discovered in my daughter, I sought to understand what exactly PANDAS was doing to her brain. The info I was getting, while not conclusive (but the opinion of Dr.s Cunningham and Latimer, as related to our pediatrician), was that the antibodies were causing false signaling in the basal ganglia, but not destroying tissue. Then, looking, in hindsight, at my daughter's abnormal development (she was my 4th child and I've taken courses in early childhood development, so know what should have happened), it just makes sense that the pathways and connections she was making were grossly affected. She was not treated until she was over 10yrs old- very little normal development occurred- so baseline is still pretty wanky behaviorwise- I think that's because she doesn't have the pathways laid down to revert back to.

 

I think (just my opinion) that if you get it later, you'll still have to deal with whatever erroneous pathways and connections have been made during an episode (like residual OCD), but the older pathways are still there and can be accessed and restrengthened.

 

Also, if you look at the function of the basal ganglia- sensory signals coming from the body go through it to the brain and the basal ganglia fine-tunes or modulates the signals going back out to the body to act upon the incoming info. So, you can see how false signaling in either or both directions could really mess things up. Just take handwriting for instance, the visual signal goes through the basal ganglia (as well as the touch sensation of fingers on pencil/paper)and the signal from the brain responds with instructions of how far and what direction to move the pencil, how tightly to hold the pencil, etc. The basal ganglia simultaneously compares the incoming and outgoing signals and adjusts the outgoing signal to match the incoming. See how this could mess up a child's handwriting during a PANDAS episode? But, what happens when the child tries to learn to write during a PANDAS episode? My guess is the brain lays down some pretty bizarre learning/memory pathways. When the episode is over- the child with previously normal pathways, has those to go back to. But the child with only the bizarro pathways has nothing to go back to.

Edited October 31, 2011 by cab40

[cab40]

Dr. Doris Rapp?

Edited March 23, 2012 by cab40

[cab40]

Does anyone know if Dr Doris Rapp is still practicing anywhere??

Edited March 23, 2012 by cab40

[cab40]

Foudn info on Rapp no longer in same location...

Edited March 23, 2012 by cab40

[bws]

Hi I'll post elsewhere so sorry again this is off topic; somene mentioned a person not sure if Dr in CA maybe a Lisa something? I cannot remember what forum section. IF you sent that info can you reporst here. Thanks..>C

 

You can try calling her foundation in Buffalo, NY

 

Practical Allergy Research Foundation

716 875 0398

800 787 8780

[MomWithOCDSon]

So then what do you do in that case? Find a group home for the child and just continue living as best as you can. Its seems like, theres just a group who was lucky and got PANDAS caught and under control quickly and a group which wasnt lucky/ didnt have teh resources and missed the window. In the end does it just turn out to be.. too bad sucks to be you while the rest go on to live normally.

 

Not to speak for Peg, but speaking for myself, it's not that simple. No, not "too bad sucks to be you." More like "Dammit . . . I KNEW there was something going on all those years ago and the entire western medical system let me down! So now, my child has to come back from a deficit he/she never should've had in the first place!"

 

A group home? Do any of us here give you the impression that we, in any way, shape or form, are ready to be rid of our sick or suffering children? Give up doing everything that we possibly can to help them have the best quality of life? That comment's a little flippant and a lot offensive. Are you feeling in some way abandoned that you think that would be any of our responses?

 

If luck is being in the right place at the right time, having the right doctor(s), knowing someone who knows someone who contended with something similar, etc., then yes, certainly luck plays a role here. I guess it also depends on your World View . . . if you believe in fate, karma, God, divine provenance, etc. "Things happen for a reason"?

 

My son's had to suffer, along with a gazillion other kids, because he was misdiagnosed and turned over to interventions that only treated the symptoms and never got to the root of the issue. But he's not alone, and he will eventually get past this . . . I know that. If anything, I'm mourning for the loss of a "normal childhood" he didn't get to have, but I still believe his future is bright . . . certainly brighter than the last 2-3 years have been!

 

And what is "normal" anyway? On some scale, everything is relative. I have a teenager with anxiety. Many parents have teenagers with substance abuse problems or extreme rebelliousness. Others contend with not just quality-of-life problems but with quantity-of-life concerns like cancer, diabetes, congential heart disease, etc. This is a life and sometimes you have to throw a short, sweet Pity Party but then get on with the business of giving every effort your all, knowing that if you expect little, you'll get less. But if you expect the best, even if it sometimes comes up short compared to your perception of how other people are getting along, you'll nonetheless do very well indeed.

[peglem]

 

 

So then what do you do in that case? Find a group home for the child and just continue living as best as you can. Its seems like, theres just a group who was lucky and got PANDAS caught and under control quickly and a group which wasnt lucky/ didnt have teh resources and missed the window. In the end does it just turn out to be.. too bad sucks to be you while the rest go on to live normally.

I do feel this way sometimes. Right now my goal for my daughter is to keep her out of group homes. Try to increase quality of life. It does suck to be me...very painful to see my child suffering so much, knowing that something could have been done to help, if only somebody had known what to do.

 

But, The brain does continue to learn, to lay new pathways. Its not completely hopeless...just very difficult.

 

Not to speak for Peg, but speaking for myself, it's not that simple. No, not "too bad sucks to be you." More like "Dammit . . . I KNEW there was something going on all those years ago and the entire western medical system let me down! So now, my child has to come back from a deficit he/she never should've had in the first place!"

Yes.

[SSS]

Sorry if it offends you but I don't think its offensive at all. If one day my pandas got so horrific and there was nothing any doctor could do....I would say yeah put me somewhere because with my immunebsystem attacking my Braun...I'm not exactly safe am I...no

 

 

*I'm sorry, I probably shouldn't even post on this thread, but if we are talking about *luck* I think you have been incredibly fortunate to come from an income bracket that has allowed you to try all the different healing options you have been trying- from the top hospitals your parents took you to as a child, over and over again as you have referred to, TSO trials, top homeopathy trial, the brain massage, etc, etc.

The families with the *bad luck*, the ones that I pity, are the ones (and how many? A LOT, I bet) that cannot afford the top 10 pandas doctors, and hit a brick wall with insurance Dr.'s, and lastly, never even know what pandas or infectious neuro issues really are, and talk about a family/children suffering.

[peglem]

Sorry if it offends you but I don't think its offensive at all. If one day my pandas got so horrific and there was nothing any doctor could do....I would say yeah put me somewhere because with my immune system attacking my Brain...I'm not exactly safe am I...no.......its really possible that it could end up that way for some people. Could end up being that way for me...just how it is...ya never know. I can see why the thought of placing your kid somewhere would upset you though.... I didn't say YOUR kid would end up in an institution....just that its possible for some people. Maybe deep down your afraid of that and that's why you find it offensive.

I know this wasn't addressed to me, but...

I wasn't offended. Honestly, we've been at the point a few times where placement seemed like the only viable option. I just can't do it. I can't give up trying. I AM afraid, and its not so deep down. I feel like I'm racing the clock as my time on this earth grows shorter- who will care enough to keep trying for my child? I pray that I have enough time to get her to a place where others can care for her so I can die in peace.

[SSS]

Okay, WOW.

I have responded to many of your posts on the Lyme forum, with my experience and trying to help.

I understand you are not feeling well right now-

I get it.

What I was really trying to say was you do have many positives-

Good Luck.