Jump to content
ACN Latitudes Forums

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


Recommended Posts

As severe as my daughter has been these last several weeks, I couldn't even bring myself to read this thread for most of today as this is my greatest fear in this... what if I don't get her back? Dr. B thinks she has had it going back to at least early elementary school (5-6 years old), but she was not even diagnosed until her first extreme exacerbation in Jan 2009, two years ago. Since then, she has endured months of not being well - both then before the T/A in August 2009 and this time, since she caught strep again in spring 2010.

 

I actually feel a little better after reading it. I don't see any references on her page. "It is theorized... " By whom? Her? "... recovery of damaged brain tissues *may* not be complete." Find us some cases where that has happened Ms. Cohen; don't post fear statements to get business. Honestly, it makes me angry that she has that on the web as none of us need more worry about this.

 

I want to share that we saw dramatic improvement after her IVIG infusion at Christmas and improvement again last week when she had it at Dr. B's center. She has CVID (and other co-existing conditions... we're testing for others), so until we get her immune system functioning better, I'm trying to be patient.

 

I totally understand your worry and indecision about what to do at this point... it's often such a tough call for treatment and so many other areas of their lives. Maybe if you take a step back... sometimes I try to project myself 10-20 years into the future and look back on the situation and ask myself, "How will I wish I had handled that?" I hope things improve soon at your house.

 

Sorry you ran across that... consider the source.

Link to comment
Share on other sites

I personally DO believe this theory that there can be permenent damage caused. I for the life of me cannot remember who it was that explained it well - that the behavior becomes learned after a period of time due to the neurological effects?

 

My DS has a cousin who also has PANDAS. There is another relative who had similar symptoms as a child but was not diagnosed with PANDAS and therefore not treated. He has led a very difficult life thus far with rehabs, drug use and jail. It scares the heck out of me! Especially since we can't seem to find an effective treatment for my DS.

 

Also, as a social worker for kids/adults with developmental disabilities, I have been looking into this on my case load. Now of course, none of the adults have/had any PANDAS DX, but I am finding many kids with the DX and a few I have requested they have titers tested. One came up high! Hard to tell since these are kids with severe disabilities to begin with so no - I don't think PANDAS caused it, but it's interesting to wonder how much they will be helped by treating the pandas and where the overlap is. I'm thinking it could be as simple as non verbal children not being able to articulate symptoms of illness and therfore infections going untreated.

Link to comment
Share on other sites

I'm thinking it could be as simple as non verbal children not being able to articulate symptoms of illness and therfore infections going untreated.

But, also, nonverbal/autistic children have trouble getting anything treated. Maybe because its so hard to do a good examine on them? I can't tell you how many times we had my daughter at the doctor when she was young for illness. Severe sinus congestion, runny nose, cough, lots of symptoms. She generally did not get fevers. Once in awhile they did give her abx, but more often than not we were sent home after being told, "its probably just allergies. Autistic kids get that a lot." No, throat swab. Sometimes they tried to look in her ears. When we finally did allergy testing...no allergies-at all. And never any concern that this kid was ALWAYS sick. Never occurred to them that her behaviors might be because she feels like schitt all of the time! I'm going to stop now-didn't intend for this to become a rant.

Link to comment
Share on other sites

Don't feel bad. I deal with it all the time and I hear ya. I deal with the aftermath when the kids in placement DON'T get the proper treatment and it makes me nuts. My standard is always "would YOU let that go if it were yourself or your child". If no, then you do what you have to do to get the tests/treatment. That's why we have papoose boards. While not pleasant, neither is a festering infection or a terrible pain that they can't verbalize!

Link to comment
Share on other sites

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...

 

 

I just finished very long letter to my son's previous physicians explaining that this is EXACTLY what happened to him (minus the permanent brain damage - I hope) ... got sick... got behavioral intervention .... seemed to get better "suddenly" .... did great until the next Fall.... got sick.. etc

 

Today is a good day for me, so you will hear an optimistic view. My son is on a good mix of azith and singulair, and the rest of the family is on azith for mycoplasma.

 

He is having the best February ever in his life because we did a steroid burst in November when his allergies were acting up and we stopped the usual winter sinus infection in its tracks. He is 13 years old and he woke up this morning very proud because he slept with his DOOR CLOSED and the lights off all night long - without me suggesting it. He did his homework this weekend without me yelling, and I did not feel the need to check to see if it was all done (I may pay for that later - we'll see). He set his alarm clock and got out of bed on his own - without me having to wake him up or threaten him to taking a shower and going to school. He was dressed and ready for school on time, taking time to fix his hair without obsessing over his hair.

 

I don't know if I will have more days like this... but for the first time I am feeling like perhaps this is not permanent brain damage. Maybe.. just maybe he will be functional by the time he finishes High School.... if I can only keep him healthy!

 

(... and if anyone is a candidate for "chronic" PANDAS it is my son - his brain has been attacked by PANDAS since he was a toddler ... on a regular basis).

Link to comment
Share on other sites

Guest pandas16

I personally DO believe this theory that there can be permenent damage caused. I for the life of me cannot remember who it was that explained it well - that the behavior becomes learned after a period of time due to the neurological effects?

 

My DS has a cousin who also has PANDAS. There is another relative who had similar symptoms as a child but was not diagnosed with PANDAS and therefore not treated. He has led a very difficult life thus far with rehabs, drug use and jail. It scares the heck out of me! Especially since we can't seem to find an effective treatment for my DS.

 

Also, as a social worker for kids/adults with developmental disabilities, I have been looking into this on my case load. Now of course, none of the adults have/had any PANDAS DX, but I am finding many kids with the DX and a few I have requested they have titers tested. One came up high! Hard to tell since these are kids with severe disabilities to begin with so no - I don't think PANDAS caused it, but it's interesting to wonder how much they will be helped by treating the pandas and where the overlap is. I'm thinking it could be as simple as non verbal children not being able to articulate symptoms of illness and therfore infections going untreated.

 

 

There are always going to be horror stories where kids can't get the treatment they need, learn the wrong behaviors and then engage in the wrong activities due to compulsiveness or whatever. There will be cases when kids are mistakenly diagnosed with autism and then suffer from developmental delays all their life. They might never turn out normal and it's extremely sad and disturbing to think about. There are also cases where kids will grow into full functional adults, accept that they have an autoimmune disease and take the necessary precautions to live a successful life.

Edited by pandas16
Link to comment
Share on other sites

I personally DO believe this theory that there can be permenent damage caused. I for the life of me cannot remember who it was that explained it well - that the behavior becomes learned after a period of time due to the neurological effects?

 

 

 

The way it was explained to me was that it becomes a learned behavior in young children (like my son who was not quite 2 at onset) partly because of how quickly new neural pathways are formed. It's like a recording of that type of behavior or ritual that even when the anxiet is gone, that ritual is "normal" to them because that's just how it's always been. It's not permanat damage, and can be undone with therapy - you just need to re-record new messages.

 

That's my understanding of it anyway.

Link to comment
Share on other sites

You said it better than me. That's the point I was trying to make about "learned behavior"

 

But I honestly also do not see why if left untreated, autoimmune illness wouldn't lead to perm brain damage if it is severe enough. I'd LIKE to be wrong here! Especially since my son is unable to take any antibiotics!

Link to comment
Share on other sites

You said it better than me. That's the point I was trying to make about "learned behavior"

 

But I honestly also do not see why if left untreated, autoimmune illness wouldn't lead to perm brain damage if it is severe enough. I'd LIKE to be wrong here! Especially since my son is unable to take any antibiotics!

In this autoimmune disease there is no evidence that brain cells/tissue is being destroyed. Just trying to help you be wrong!

Link to comment
Share on other sites

I don't know . . . like Tantrums, I'd LIKE to be wrong, but . . . . . .

 

You read or listen to Dr. Kenneth Bock, you hear that compromising the immune system even in utero, let alone from birth forward, can result in some neurological differences that can be difficult to reverse. That's one reason he's tuned his practice to educating and treating women BEFORE conception even, so that the "temple" that this life comes into and is nourished by is the healthiest environment it can be.

 

So . . . .

 

If what he purports is true, then entirely reversing years of both immune disorder and/or behavioral issues due to either untreated or inadequately treated PANDAS seems like a tall order. Not impossible, necessarily, but maybe more often the exception than the rule?

 

Just on a personal level, our DS went for at least 7 years diagnosed with OCD and treated accordingly, before we found PANDAS or antibiotics. And we suspect he'd been exposed to strep and suffering on a subclinical level for even years before the OCD diagnosis. So even though he's responded remarkably to antibiotics and we support him further with supplements and ERP and an IEP at school, I'm preparing myself that he may always have some OCD . . . that his "baseline" has forever shifted. My prayers, frankly, are that he will nonetheless be functional, achieve his goals personally and professionally, and live happily . . . if quirkily . . . ever after! ;)

Link to comment
Share on other sites

I don't know . . . like Tantrums, I'd LIKE to be wrong, but . . . . . .

 

You read or listen to Dr. Kenneth Bock, you hear that compromising the immune system even in utero, let alone from birth forward, can result in some neurological differences that can be difficult to reverse. That's one reason he's tuned his practice to educating and treating women BEFORE conception even, so that the "temple" that this life comes into and is nourished by is the healthiest environment it can be.

 

So . . . .

 

If what he purports is true, then entirely reversing years of both immune disorder and/or behavioral issues due to either untreated or inadequately treated PANDAS seems like a tall order. Not impossible, necessarily, but maybe more often the exception than the rule?

 

Just on a personal level, our DS went for at least 7 years diagnosed with OCD and treated accordingly, before we found PANDAS or antibiotics. And we suspect he'd been exposed to strep and suffering on a subclinical level for even years before the OCD diagnosis. So even though he's responded remarkably to antibiotics and we support him further with supplements and ERP and an IEP at school, I'm preparing myself that he may always have some OCD . . . that his "baseline" has forever shifted. My prayers, frankly, are that he will nonetheless be functional, achieve his goals personally and professionally, and live happily . . . if quirkily . . . ever after! ;)

Well, I frankly don't see my daughter ever living independently...but hopefully she'll recover enough that she can stay with family and not need "home-type" placement. On the other hand- I see no logical reason that we can not work on developing her brain in the areas that have been mis-developed, so who knows how far she can go.

Link to comment
Share on other sites

Well, I frankly don't see my daughter ever living independently...but hopefully she'll recover enough that she can stay with family and not need "home-type" placement. On the other hand- I see no logical reason that we can not work on developing her brain in the areas that have been mis-developed, so who knows how far she can go.

 

Oh, I would completely agree that there HAS to be the opportunity for developing new and maybe "replacement" neural pathways, not only through childhood but well into adulthood, as well! Look at all the adult stroke victims who "relearn" walking, talking, etc., even though there's been "damage" to a part of the brain?!? For sure our kids can continue to make progress.

 

I just wonder if it's fair to anyone . . . our kids or ourselves . . . to expect 100% in all cases? :blink:

 

I wonder, too, if there's something more extraordinary about the parts of the brain thought to be impacted particularly by PANDAS: the caudate nucleus and the petumen. And if these two parts of the brain are where the tics and OCD are being born, is it that they're somehow more central to function and, unlike the other lobes, slower to regenerate or permit new pathways to be established? I'd love to hear a neurologist on these issues . . . brain healing, rates of healing attached to various sections of the brain, etc.

Link to comment
Share on other sites

Personally, I believe that brain plasticity and the resilience of youth are on the side of our PANDAS kids as they mature, assuming they receive effective treatment. Maybe wishful thinking... but I tell myself that my ds can continue to improve and eventually completely kick PANDAS's butt.

 

On the other hand, I have a hard time believing our ds will emerge completely unscathed and unchanged by this traumatic illness. I have Crohn's disease (another autoimmune disorder), and the fact of that illness is that inflammation tends to take a toll on the affected tissues over time. At dark moments, I worry terribly about what inflammation has done to ds's brain.

 

But I take major solace from stories of "PANDAS survivors" like pandas16, who have learned to manage the disorder so well that they are able to excel in college, have a happy adult life, enjoy friends and socializing, and just generally inspire other PANDAS sufferers to keep fighting.

 

Pretty wishy-washy, eh? Like most of us, I pray for the best and fear the rest. :wacko:

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
×
×
  • Create New...