Buster, I moved this post because

[monarchcat]

I think in this case it may be sensory integration disorder?

[fuelforall]

I think in this case it may be sensory integration disorder?

 

 

Actually Monarch cat is right here.

Buster, what do you think of my son's numbers?

[Fixit]

I think in this case it may be sensory integration disorder?

 

knowing just a little of fuelforall is dealing with....

how were you able to pull that out the information?? you may be right, i don't know.....but how did you get there????

 

and even if you explain it, i still may not get it

[Buster]

I think in this case it may be sensory integration disorder?

 

 

Actually Monarch cat is right here.

Buster, what do you think of my son's numbers?

Unfortunately, we just don't have enough data to know how to interpret the numbers. Hopefully Dr. Cunningham will publish her new results and research. High antilysogangliosides have been associated with higher OCD symptoms in those cases that have posted on this forum.

 

Buster

[Buster]

Again Buster, how dod you know for sure if its #1 #2 or #3 ??

 

It doesn't seem like it is one or the other, but rather all three.

1. genetic predisposition
   
2. failure to suppress (or creation of) anti-neuronal antibody
   
3. breach of blood-brain barrier
   

#1 seems to be proven by the fact that only 4-6% of people exposed to acute rheumatic fever seem to get ARF. This appears to be true regardless of geography or ethincity. As such, scientists think it is genetic. They haven't isolated the gene yet but this will come.

 

#2 seems to be proven by Kirvan's experiments that anti-neuronal antibodies are present in the CSF and blood serum of patients with PANDAS. The detractors will say that it isn't causal (i.e., we don't know that PANDAS is the only disease that causes the anti-neuronal antibodies) and that is true. But the existance of anti-neuronal antibodies in SC and PANDAS is suggestive of the link.

 

#3 is very tricky to prove. The Max Planck institute video I posted a while back showed how T-cells could cross the BBB using the ICAM-1 inflammatory markers. The existance of the anti-neuronal antibodies in CSF is also indicative that the BBB was breached. However, whether it is T-cell crossing with antibody leakage or B-cell crossing is unknown.

 

So we don't know yet exactly how the antibody crosses, but the three items above are the best we know at the moment. Just a reminder that #2 and #3 can happen 1-2 months apart.

 

Buster

[Stephanie2]

Actually, I was referring to Sensory Integration Dysfunction, AKA Sensory Processing Disorder

 

Steph

 

what is SID?

Not sure how this ties to this thread, but SID is usually raised in this forum as Specific Immune Deficiency -- a failure to have IgG response to a specific antigen such as pneumonococcal antibodies.

 

Buster

[Buster]

Oops

 

Thanks for the correction.

 

Actually, I was referring to Sensory Integration Dysfunction, AKA Sensory Processing Disorder

 

Steph

 

what is SID?

Not sure how this ties to this thread, but SID is usually raised in this forum as Specific Immune Deficiency -- a failure to have IgG response to a specific antigen such as pneumonococcal antibodies.

 

Buster

[Megs_Mom]

sorry, late post.

Edited May 25, 2010 by Meg's Mom

[fuelforall]

I am now officially back on the fence as regards IVIG>

What I have seen in my son convinces me I am no longer certain it is a flop. It may indeed, after a long germination, have begun to take.

There are other factors involved but I don't see as much extreme behavior as I had last month while in exacerbation.

We are however dealing with more yeast. More silliness. He reverts to that behavior somewhat when under pressure.

 

So I am cancelling any more IVIGs with the idea that I don't need to stir up the system further. I believe Coco had a post on that in response to Bronxmom. We're just going to chill a while, try a few other things and hope the antibodies settle down a bit.

 

Michael

[Fixit]

Wow....its is great that things are slowly progressing...slow and steady wins the race.

also kudos to you for finding the fortitude to pull back and be patient!!!!

 

 

I am now officially back on the fence as regards IVIG>

What I have seen in my son convinces me I am no longer certain it is a flop. It may indeed, after a long germination, have begun to take.

There are other factors involved but I don't see as much extreme behavior as I had last month while in exacerbation.

We are however dealing with more yeast. More silliness. He reverts to that behavior somewhat when under pressure.

 

So I am cancelling any more IVIGs with the idea that I don't need to stir up the system further. I believe Coco had a post on that in response to Bronxmom. We're just going to chill a while, try a few other things and hope the antibodies settle down a bit.

 

Michael

Edited June 1, 2010 by Fixit

[Mary M]

Michael,

 

Two months, what a long, very long wait time. Please keep posting as you continue to see improvement. My dd is having IVIg on June 14 and 15. Two months seems painfully long to wait but I do believe that the severity of symptoms that my dd has achieved have taken longer than two months to develop so perhaps it takes a while to see the immune system learn to heal itself. It is just so hard, because they are just children and they are losing so much of their childhood to this dreadful disease.

[Johnsmom]

I will be praying for your dd Mary. My son is scheduled on the 16th & 17th. 15 days & counting!

 

Michael,

 

Two months, what a long, very long wait time. Please keep posting as you continue to see improvement. My dd is having IVIg on June 14 and 15. Two months seems painfully long to wait but I do believe that the severity of symptoms that my dd has achieved have taken longer than two months to develop so perhaps it takes a while to see the immune system learn to heal itself. It is just so hard, because they are just children and they are losing so much of their childhood to this dreadful disease.