Buster, I moved this post because

[fuelforall]

Buster,

It's been two months since my son's second IVIG and no dice. Nothing.

My son's anti-lysogaglioside numbers were thru the roof. 2000.

This should be what the iVIG tries to get at, right?

No abx seem to provide relief either.

My wife needs convincing that doing another IVIG is worth it.

 

Your input as always is welcome.

 

Michael

[Buster]

Hi Fuelforall,

 

Can you post your actual numbers? The antilysogangliosides should have tapped out at 1280 -- at least the way that Cunningham usually runs the tests.

 

She's testing in dilutions of 1/2 -- so 10,20,40,80,160,320,640,1280

 

Similarly on anti-D1 she's testing (I think), 125, 250, 500, 1000, 2000, 4000, 8000, 16000

 

In general, no, IVIG does not directly address the anti-lysogangliosides. However, they may be affected by IVIG. IVIG is a very broad treatment having lots of effects -- it is not a precise treatment.

 

From the literature, IVIG is thought to have 3 main effects:

1. IVIG at larger doses is highly anti-inflammatory -- if the tic/OCD are due to antibodies crossing the blood-brain barrier, IVIG could help close the BBB
   
2. IVIG brings new antibodies that can block T-cell activation -- this is sometimes called regulatory -- it is immuno suppressive
   
3. IVIG also adds new antibodies that can mark bacteria/cells. This is helpful if your own body can't recognize the disease (can create the antibody).
   

#3 is really more around people who can't raise a response to certain antigens. #2 suppresses a response. #1 reduces inflammation.

 

What Cunningham has published on is the reduction of CaM Kinase II post PEX/IVIG -- she hasn't published on the anti-lysogangliosides yet. Essentially, we don't know what the antiD2, anti-D1 or anti-lysoganglioside #'s mean yet. Cunningham tests are more confirmatory rather than diagnostic at this point.

 

Buster

 

Buster,

It's been two months since my son's second IVIG and no dice. Nothing.

My son's anti-lysogaglioside numbers were thru the roof. 2000.

This should be what the iVIG tries to get at, right?

No abx seem to provide relief either.

My wife needs convincing that doing another IVIG is worth it.

 

Your input as always is welcome.

 

Michael

[melanie]

oK Buster what is the high dose how do you know if tics are related to inflamation or if its #2 or #3?

 

Melanie

[Buster]

Apparently dosing above 1.5 g/kg is highly anti-inflammatory.

 

In terms of tics (or OCD), no easy way to know between #2 (immune supressive) and #3 (anti-inflammatory). IVIG is just too blunt a treatment to discern. Prednisone also affects both #2 and #3. Dr. K uses prednisone burst as a check to see if IVIG might be effective (i.e., if prednisone is effective, IVIG is likely more effective).

 

Buster

 

 

oK Buster what is the high dose how do you know if tics are related to inflamation or if its #2 or #3?

 

Melanie

[Stephanie2]

Michael, I guess that means "no dice" on the spiro, too?

 

Stephanie

 

Buster,

It's been two months since my son's second IVIG and no dice. Nothing.

My son's anti-lysogaglioside numbers were thru the roof. 2000.

This should be what the iVIG tries to get at, right?

No abx seem to provide relief either.

My wife needs convincing that doing another IVIG is worth it.

 

Your input as always is welcome.

 

Michael

[melanie]

Buster,

 

But if steroids did work well and IVIG is helping (its defitily helping) may not be helping as if he was totally cured.I would have liked to have been cured after 1 treatment.He is off all meds except 1 mg tenex so Im happy just not jumping up and down.

 

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

 

Thank you soooooo much for being here

 

Melanie

[fuelforall]

Hi, Buster,

Cam Kinase 134

\Anti lysogangliosides. You were right 1280

Anti tubulin 500 normal

Anti d 1 2000 (high normal)

Anti d 2 2000 (low normal)

 

Thanks.

 

Michael

[fuelforall]

Michael, I guess that means "no dice" on the spiro, too?

 

Stephanie

 

[

 

Hi, Stephanie,

Actually, per the spiro,it's kind of hard to say. He has reached a clinical dose of Intuniv, complete with negative side effects, and there may be some residual help there. There may also be some relief from the spiro. I want to run it a month and see what happens. We are trying to keep up with his abx as well, he's been getting Clindamycin again. Lots of sore joints, nasal congestion (allergies AND trouble from the Intuniv), does have explosions but bounces back nicely which is good to see. He wouldn't take the spiro this AM, said it tasted funny. He does this a lot, his SID rages on.

Hope your older boy is feeling better.

Michael

[Stephanie2]

Oh, ok. Well, Ihope things get better. BTW you mentioned something about a QEEG for your son. Have you ever had an MRI? My 2 yo has Chiari Malformation which was detected via MRI. I hear from many sources that Chiari can cause sensory issues. In my son it causes light sensitivity, used to cause tactile defensiveness and causes occassional headaches. He has also had times of ataxia (could hardly walk for 36 hours back in Nov.). He is doing well right now and does not need surgery at this time

 

. My 5yo has never had an MRI but he has had severe sensory issues come and go so we have considered having him checked for chiari. Just don't want to rock the boat by having him put to sleep right now (besides what would I do, have him go through brain surgery for SID? probably not, so we are on hold for that right now). I have to say, though, that pandas more than doubles his sensory issues.

 

Just a thought.

Stephanie

Michael, I guess that means "no dice" on the spiro, too?

 

Stephanie

 

[

 

Hi, Stephanie,

Actually, per the spiro,it's kind of hard to say. He has reached a clinical dose of Intuniv, complete with negative side effects, and there may be some residual help there. There may also be some relief from the spiro. I want to run it a month and see what happens. We are trying to keep up with his abx as well, he's been getting Clindamycin again. Lots of sore joints, nasal congestion (allergies AND trouble from the Intuniv), does have explosions but bounces back nicely which is good to see. He wouldn't take the spiro this AM, said it tasted funny. He does this a lot, his SID rages on.

Hope your older boy is feeling better.

Michael

[kimballot]

I am curious if anyone has ever tried freezing their meds if they taste funny to the kids. In theory, this should help SID. Also, having them drink a very cold drink before the meds should help because it should decrease sensitivity a bit. I don't know if the meds are affected by freezing. I know my MD tells me to freeze my fish oil.

 

Just a thought

[fuelforall]

I am curious if anyone has ever tried freezing their meds if they taste funny to the kids. In theory, this should help SID. Also, having them drink a very cold drink before the meds should help because it should decrease sensitivity a bit. I don't know if the meds are affected by freezing. I know my MD tells me to freeze my fish oil.

 

Just a thought

 

 

Interesting about the cold drink! Thanks, Kim

[peglem]

Oh, ok. Well, Ihope things get better. BTW you mentioned something about a QEEG for your son. Have you ever had an MRI? My 2 yo has Chiari Malformation which was detected via MRI. I hear from many sources that Chiari can cause sensory issues. In my son it causes light sensitivity, used to cause tactile defensiveness and causes occassional headaches. He has also had times of ataxia (could hardly walk for 36 hours back in Nov.). He is doing well right now and does not need surgery at this time

 

. My 5yo has never had an MRI but he has had severe sensory issues come and go so we have considered having him checked for chiari. Just don't want to rock the boat by having him put to sleep right now (besides what would I do, have him go through brain surgery for SID? probably not, so we are on hold for that right now). I have to say, though, that pandas more than doubles his sensory issues.

 

Just a thought.

Stephanie

Michael, I guess that means "no dice" on the spiro, too?

 

Stephanie

 

[

 

 

Hi, Stephanie,

Actually, per the spiro,it's kind of hard to say. He has reached a clinical dose of Intuniv, complete with negative side effects, and there may be some residual help there. There may also be some relief from the spiro. I want to run it a month and see what happens. We are trying to keep up with his abx as well, he's been getting Clindamycin again. Lots of sore joints, nasal congestion (allergies AND trouble from the Intuniv), does have explosions but bounces back nicely which is good to see. He wouldn't take the spiro this AM, said it tasted funny. He does this a lot, his SID rages on.

Hope your older boy is feeling better.

Michael

 

Just a thought...it seems to me like inflammation would worsen chiari symptoms, wouldn't it? I mean, it seems to me that it would crowd the cerebellar tonsils even more than they already are.

[Stephanie2]

peglem, that's what I would think, but I don't ever see a correlation between his chiari symptoms and his pandas. But as he gets older (and hopefully verbal) maybe I will see a correlation. They both wax and wane, but not at the same time.

 

Stephanie

 

Oh, ok. Well, Ihope things get better. BTW you mentioned something about a QEEG for your son. Have you ever had an MRI? My 2 yo has Chiari Malformation which was detected via MRI. I hear from many sources that Chiari can cause sensory issues. In my son it causes light sensitivity, used to cause tactile defensiveness and causes occassional headaches. He has also had times of ataxia (could hardly walk for 36 hours back in Nov.). He is doing well right now and does not need surgery at this time

 

. My 5yo has never had an MRI but he has had severe sensory issues come and go so we have considered having him checked for chiari. Just don't want to rock the boat by having him put to sleep right now (besides what would I do, have him go through brain surgery for SID? probably not, so we are on hold for that right now). I have to say, though, that pandas more than doubles his sensory issues.

 

Just a thought.

Stephanie

Michael, I guess that means "no dice" on the spiro, too?

 

Stephanie

 

[

 

 

Hi, Stephanie,

Actually, per the spiro,it's kind of hard to say. He has reached a clinical dose of Intuniv, complete with negative side effects, and there may be some residual help there. There may also be some relief from the spiro. I want to run it a month and see what happens. We are trying to keep up with his abx as well, he's been getting Clindamycin again. Lots of sore joints, nasal congestion (allergies AND trouble from the Intuniv), does have explosions but bounces back nicely which is good to see. He wouldn't take the spiro this AM, said it tasted funny. He does this a lot, his SID rages on.

Hope your older boy is feeling better.

Michael

 

Just a thought...it seems to me like inflammation would worsen chiari symptoms, wouldn't it? I mean, it seems to me that it would crowd the cerebellar tonsils even more than they already are.

[chodnett]

what is SID?

[Buster]

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