Anti Inflammatories and Immune Modulation

[tapiash]

I drove 19 hours to see a Pandas doctor in California. He was wonderful. We have a treatment plan in place, well at least I thought we did. I sent him all the results from Cunningham and this how he replied.

 

"Many children on the spectrum displays autoimmunity, which means they produce auto antibodies against their own tissues. We need to discuss anti ininflammatories and modulation of the immune system."

 

Can someone please elaborate. Why does my son need antiinflamatories and what is modulation of the immune system? I guess I am just ignorant. I should probably know this terminology by now.

Edited May 18, 2010 by Chemar

[T_Mom]

I drove 19 hours to see a Pandas doctor in California. He was wonderful. We have a treatment plan in place, well at least I thought we did. I sent him all the results from Cunningham and this how he replied.

 

"Many children on the spectrum displays autoimmunity, which means they produce auto antibodies against their own tissues. We need to discuss anti ininflammatories and modulation of the immune system."

 

Can someone please elaborate. Why does my son need antiinflamatories and what is modulation of the immune system? I guess I am just ignorant. I should probably know this terminology by now.

 

 

Sounds like you may have found a knowledgeable doc! If he is not listed on the parent recommended list on this forum can you please add him?

 

What did he prescribe for Pandas treatment? How long?

 

I think Buster's links at the top of the PANDAS forum page under "helpful threads" will explain better then I can the answers to your questions-- read there.

 

There is also excellent information on the following website--which is a wealth of information and includes the rationale behind antiinflammatories and immunomodulation--

 

www.pandasnetwork.org

 

Please keep us posted on how it goes--All the best to you--

[tapiash]

I drove 19 hours to see a Pandas doctor in California. He was wonderful. We have a treatment plan in place, well at least I thought we did. I sent him all the results from Cunningham and this how he replied.

 

"Many children on the spectrum displays autoimmunity, which means they produce auto antibodies against their own tissues. We need to discuss anti ininflammatories and modulation of the immune system."

 

Can someone please elaborate. Why does my son need antiinflamatories and what is modulation of the immune system? I guess I am just ignorant. I should probably know this terminology by now.

 

 

Sounds like you may have found a knowledgeable doc! If he is not listed on the parent recommended list on this forum can you please add him?

 

What did he prescribe for Pandas treatment? How long?

 

I think Buster's links at the top of the PANDAS forum page under "helpful threads" will explain better then I can the answers to your questions-- read there.

 

There is also excellent information on the following website--which is a wealth of information and includes the rationale behind antiinflammatories and immunomodulation--

 

 

 

Right now he is on Zithromax for a month, yeast medication and probiotic. I thought in a month we were going to do steroids but after reading his email today we may start a more intense treatment. He did not mention antiinflammatories or immune modulation during our last visit but he also did not have Cunninghams results either. Thank you for sending me in the right direction.

 

Shirley

 

www.pandasnetwork.org

 

Please keep us posted on how it goes--All the best to you--

[Buster]

Hi Tapiash

 

"Many children on the spectrum displays autoimmunity, which means they produce auto antibodies against their own tissues. We need to discuss anti ininflammatories and modulation of the immune system."

 

Can someone please elaborate. Why does my son need antiinflamatories and what is modulation of the immune system?

 

Well PANDAS is thought to be caused by three things:

1. a genetic predisposition to an abnormal immune response
   
2. an immune response to GABHS that produces anti-neuronal antibodies
   
3. a breach of the blood-brain barrier that exposes the anti-neuronal antibodies to neuronal tissue
   

In PITANDS replace GABHS in #2 with some other antigen.

 

When your doctor is referring to anti-inflammatories and immuno-modulation, they are taking about addressing #2 and #3. Anti-inflammatories can help address #3, and immunomodulation can help address #2.

 

Azithromycin is both an antibiotic and is immunomodulating. In addition to suppressing growth of gram positive bacteria (such as GABHS) it also shifts something called the Th2->Th1 response. Essentially this changes whether the body produces stuff that goes after bacteria or stuff that goes after infected cells. Curiously this shift also affects inflammation.

 

Other anti-inflammatories are things like Advil - or Non-Steroid Anti-Inflammatories. Predisone is a steroid anti-inflammatory and immunomodulating.

 

IVIG in high enough dosage is also immunomodulating, immunosuppressive and anti-inflammatory. Your doctor should be able to explain the rationale for any treatment and it sounds like you have one well informed. Let me know if this just creates more questions.

 

Buster

[Stephanie2]

If you don't mind, who is your doctor? Is it a DAN doctor?

 

Many DAN doctors (if they are knowledgable about PANDAS) use the following for immune modulation: spironolactone, actos, LDN (low-dose naltrexone) and/or IVIG. We are using IVIG and spironolactone (and prophylactic zithromax, of course). Getting some good relief with those in both of my boys (actually, one of my sons is only on spironolactone and he is doing ok).

 

Stephanie

[tapiash]

If you don't mind, who is your doctor? Is it a DAN doctor?

 

Many DAN doctors (if they are knowledgable about PANDAS) use the following for immune modulation: spironolactone, actos, LDN (low-dose naltrexone) and/or IVIG. We are using IVIG and spironolactone (and prophylactic zithromax, of course). Getting some good relief with those in both of my boys (actually, one of my sons is only on spironolactone and he is doing ok).

 

Stephanie

 

Dr. thomas Lin in irvine Ca. He was great. What is spironolactone? IVIG is our last resort. He said we can try to get the approval while he is taking steroids. I am really afraid of the steroids but Im assuming he knows what he is doing.

[Fixit]

can i ask why your doc thinks ivig is your last resor???

 

what tests did you have done and what were the results????

 

just because somthing worked or didnt' work for someone else doens't mean that is the case for you......

i'm not trying to be a party pooper......i definiley thinkg ivig is worth pursuing....but what happened?///

did you get any numbers.....or lack of and basicly your kids system is just in overdrive and needs to be stopped??????

[tapiash]

can i ask why your doc thinks ivig is your last resor???

 

what tests did you have done and what were the results????

 

just because somthing worked or didnt' work for someone else doens't mean that is the case for you......

i'm not trying to be a party pooper......i definiley thinkg ivig is worth pursuing....but what happened?///

did you get any numbers.....or lack of and basicly your kids system is just in overdrive and needs to be stopped??????

 

 

I have no idea why IVIG is the last resort. I am so mentally exhausted. I want to pursue IVIG but I need a doctor who will give the go ahead. I do not want steroids but Im not sure what else to do.

Cam K was 162

Anti-Lysoganglioside 640

Tublin 2000

Anti-Dopamine 1 400

[peglem]

Does he mean last resort, as in, "we'll only use it if we really have to and nothing else is working" or "you're at that point where IVIG is the only thing that can possibly help?"

[tapiash]

Does he mean last resort, as in, "we'll only use it if we really have to and nothing else is working" or "you're at that point where IVIG is the only thing that can possibly help?"

I think we'll only use it if we really have to and nothing else is working.

[parents4eyes]

x

Edited September 9, 2010 by parents4eyes

[tapiash]

I drove 19 hours to see a Pandas doctor in California. He was wonderful. We have a treatment plan in place, well at least I thought we did. I sent him all the results from Cunningham and this how he replied.

 

"Many children on the spectrum displays autoimmunity, which means they produce auto antibodies against their own tissues. We need to discuss anti ininflammatories and modulation of the immune system."

 

Can someone please elaborate. Why does my son need antiinflamatories and what is modulation of the immune system? I guess I am just ignorant. I should probably know this terminology by now.

I am going to PM you as soon as I get a chance.

 

 

Thanks, please do

[Stephanie2]

Here is some info about the use of spironolactone for immune modulation:

 

http://www.icdrc.org/documents/Bradstreet%...thor%20Copy.pdf

 

It has greatly helped my 5yo.

 

Stephanie

 

If you don't mind, who is your doctor? Is it a DAN doctor?

 

Many DAN doctors (if they are knowledgable about PANDAS) use the following for immune modulation: spironolactone, actos, LDN (low-dose naltrexone) and/or IVIG. We are using IVIG and spironolactone (and prophylactic zithromax, of course). Getting some good relief with those in both of my boys (actually, one of my sons is only on spironolactone and he is doing ok).

 

Stephanie

 

Dr. thomas Lin in irvine Ca. He was great. What is spironolactone? IVIG is our last resort. He said we can try to get the approval while he is taking steroids. I am really afraid of the steroids but Im assuming he knows what he is doing.

[EAMom]

ohhh..now I'm curious!

[tapiash]

ohhh..now I'm curious!

 

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