IVIG for Immune Deficiency

[EAMom]

EAMom, yes my son still has his tonsils. His strep titers have never been more than a little elevated and they are currently not elevated at all, so I'm not sure if removing tonsils would make a difference in his case. When we were doing lyme treatment, his LLMD checked for Toxoplasmosis and he was IGG but not IGM positive. But no treatment for this was ever suggested. We are open to any and all suggestions, so if you or anyone else has any ideas please PM me. So far we are not seeing any obvious improvements on Clozaril.

 

Ellen

 

 

Denise, I recently had a consult with my son's DAN doctor, and we spoke about high dose vs. low dose IVIG for PANDAS kids with immune deficiencies. She has talked with several immunologists who treat PANDAS, and they are split on this issue. A couple months ago, I posted an update on my son, who had a severe setback last spring and is now dealing with not just OCD as the primary symptom but major delusions, hallucinations, and paranoia. In October he reached a point where he could no longer function at home, and we had to hospitalize him. In January he was transferred to a different hospital, which has a school on the premises and is more set up for a long term stay, and he has been on Clozaril for the schizophrenic symptoms since early December. We have been told that this medication can take up to six months to work, and we are trying to come up with a plan for IVIG if the Clozaril does not help or if it doesn't help enough. My son has had four high dose IVIGs over the past couple of years and only the first one was helpful. He has significant immune deficiencies (low IGG, low IGA, and low IGM), and his DAN is in agreement with those immunologists who feel that low dose monthly IVIG is better for PANDAS kids who are also immune deficient and that high dose IVIG can sometimes exacerbate symptoms for kids with these deficiencies. A few of the immunologists she has spoken to strongly disagree with this position, but my husband and are willing to try low dose monthly IVIG at some point after our son becomes stable enough to go for these treatments, since the last high dose IVIG he had did not help at all with the schizophrenic symptoms or anything else; it only made him worse. His DAN did say that if he responds well to the low dose, then we could gradually build to higher doses in time. I know that every kid is different in how they respond to IVIG, but if you are finding that high dose is no longer working for her, it might be worthwhile to try it this way. I would also be really interested in finding out from others on the forum if low dose monthly IVIG has been helpful for immune deficient kids and if so, how long it takes to start to see improvements.

 

Ellen

 

 

Ellen, does you son still have his tonsils?

 

Also, have they checked his Toxoplasmosis titers?

 

have you seen this Ellen?

http://www.independent.co.uk/news/science/scientists-shocked-to-find-antibiotics-alleviate-symptoms-of-schizophrenia-7469121.html

 

here's a bit of the article:

A cheap antibiotic normally prescribed to teenagers for acne is to be tested as a treatment to alleviate the symptoms of psychosis in patients with schizophrenia, in a trial that could advance scientific understanding of the causes of mental illness.

 

The National Institute for Health Research is funding a £1.9m trial of minocycline, which will begin recruiting patients in the UK next month. The research follows case reports from Japan in which the drug was prescribed to patients with schizophrenia who had infections and led to dramatic improvements in their psychotic symptoms.

 

The chance observation caused researchers to test the drug in patients with schizophrenia around the world. Trials in Israel, Pakistan and Brazil have shown significant improvement in patients treated with the drug.

 

 

Also, re the tonsils...I don't know if I would count on titers to tell you if they were infected. It seems like so many PANDAS kids have strep w/out titers. Also, there may be non-strep pathogens hiding out causing problems in the tonsils. It's hard to say. There are a couple of PANDAS docs that recommend T/A, but not all. It's something to consider. There are kdis on this forum that have had normal sized tonsils removed, and they have wound up being shrunken from infection.

 

Also, have you seen this article (probably?) http://www.theatlantic.com/magazine/archive/2012/03/how-your-cat-is-making-you-crazy/8873/2/?single_page=true

not sure how to treat the toxo?

Edited March 4, 2012 by EAMom

[Ellen]

EAMom, thanks for this info. You make a good point about the possibility of nonstrep pathogens or strep (without the titers) in the tonsils. It is definitely something to consider. The article on Minocycline is really interesting, and even though my son was on it at times for lyme, we have not tried it since he developed the schizophrenic symptoms. I don't think we would have much to lose by trying it again; it will take a lot of hard work and persuasion to get the hospital doctors on board with this, but it is worth trying, especially if we don't get good enough results with just the Clozaril. I also want to further investigate possible treatment for schizophrenics who are positive for toxoplasmosis. I will look into it more and talk to my son's DAN doc about it. If anyone finds anything on this topic, please PM me. I'll try to post a new thread with an update on my son some time soon.

 

Ellen

 

EAMom, yes my son still has his tonsils. His strep titers have never been more than a little elevated and they are currently not elevated at all, so I'm not sure if removing tonsils would make a difference in his case. When we were doing lyme treatment, his LLMD checked for Toxoplasmosis and he was IGG but not IGM positive. But no treatment for this was ever suggested. We are open to any and all suggestions, so if you or anyone else has any ideas please PM me. So far we are not seeing any obvious improvements on Clozaril.

 

Ellen

 

 

Denise, I recently had a consult with my son's DAN doctor, and we spoke about high dose vs. low dose IVIG for PANDAS kids with immune deficiencies. She has talked with several immunologists who treat PANDAS, and they are split on this issue. A couple months ago, I posted an update on my son, who had a severe setback last spring and is now dealing with not just OCD as the primary symptom but major delusions, hallucinations, and paranoia. In October he reached a point where he could no longer function at home, and we had to hospitalize him. In January he was transferred to a different hospital, which has a school on the premises and is more set up for a long term stay, and he has been on Clozaril for the schizophrenic symptoms since early December. We have been told that this medication can take up to six months to work, and we are trying to come up with a plan for IVIG if the Clozaril does not help or if it doesn't help enough. My son has had four high dose IVIGs over the past couple of years and only the first one was helpful. He has significant immune deficiencies (low IGG, low IGA, and low IGM), and his DAN is in agreement with those immunologists who feel that low dose monthly IVIG is better for PANDAS kids who are also immune deficient and that high dose IVIG can sometimes exacerbate symptoms for kids with these deficiencies. A few of the immunologists she has spoken to strongly disagree with this position, but my husband and are willing to try low dose monthly IVIG at some point after our son becomes stable enough to go for these treatments, since the last high dose IVIG he had did not help at all with the schizophrenic symptoms or anything else; it only made him worse. His DAN did say that if he responds well to the low dose, then we could gradually build to higher doses in time. I know that every kid is different in how they respond to IVIG, but if you are finding that high dose is no longer working for her, it might be worthwhile to try it this way. I would also be really interested in finding out from others on the forum if low dose monthly IVIG has been helpful for immune deficient kids and if so, how long it takes to start to see improvements.

 

Ellen

 

 

Ellen, does you son still have his tonsils?

 

Also, have they checked his Toxoplasmosis titers?

 

have you seen this Ellen?

http://www.independent.co.uk/news/science/scientists-shocked-to-find-antibiotics-alleviate-symptoms-of-schizophrenia-7469121.html

 

here's a bit of the article:

A cheap antibiotic normally prescribed to teenagers for acne is to be tested as a treatment to alleviate the symptoms of psychosis in patients with schizophrenia, in a trial that could advance scientific understanding of the causes of mental illness.

 

The National Institute for Health Research is funding a £1.9m trial of minocycline, which will begin recruiting patients in the UK next month. The research follows case reports from Japan in which the drug was prescribed to patients with schizophrenia who had infections and led to dramatic improvements in their psychotic symptoms.

 

The chance observation caused researchers to test the drug in patients with schizophrenia around the world. Trials in Israel, Pakistan and Brazil have shown significant improvement in patients treated with the drug.

 

 

Also, re the tonsils...I don't know if I would count on titers to tell you if they were infected. It seems like so many PANDAS kids have strep w/out titers. Also, there may be non-strep pathogens hiding out causing problems in the tonsils. It's hard to say. There are a couple of PANDAS docs that recommend T/A, but not all. It's something to consider. There are kdis on this forum that have had normal sized tonsils removed, and they have wound up being shrunken from infection.

 

Also, have you seen this article (probably?) http://www.theatlantic.com/magazine/archive/2012/03/how-your-cat-is-making-you-crazy/8873/2/?single_page=true

not sure how to treat the toxo?

[EAMom]

EAMom, thanks for this info. You make a good point about the possibility of nonstrep pathogens or strep (without the titers) in the tonsils. It is definitely something to consider. The article on Minocycline is really interesting, and even though my son was on it at times for lyme, we have not tried it since he developed the schizophrenic symptoms. I don't think we would have much to lose by trying it again; it will take a lot of hard work and persuasion to get the hospital doctors on board with this, but it is worth trying, especially if we don't get good enough results with just the Clozaril. I also want to further investigate possible treatment for schizophrenics who are positive for toxoplasmosis. I will look into it more and talk to my son's DAN doc about it. If anyone finds anything on this topic, please PM me. I'll try to post a new thread with an update on my son some time soon.

 

Ellen

 

EAMom, yes my son still has his tonsils. His strep titers have never been more than a little elevated and they are currently not elevated at all, so I'm not sure if removing tonsils would make a difference in his case. When we were doing lyme treatment, his LLMD checked for Toxoplasmosis and he was IGG but not IGM positive. But no treatment for this was ever suggested. We are open to any and all suggestions, so if you or anyone else has any ideas please PM me. So far we are not seeing any obvious improvements on Clozaril.

 

Ellen

 

 

Denise, I recently had a consult with my son's DAN doctor, and we spoke about high dose vs. low dose IVIG for PANDAS kids with immune deficiencies. She has talked with several immunologists who treat PANDAS, and they are split on this issue. A couple months ago, I posted an update on my son, who had a severe setback last spring and is now dealing with not just OCD as the primary symptom but major delusions, hallucinations, and paranoia. In October he reached a point where he could no longer function at home, and we had to hospitalize him. In January he was transferred to a different hospital, which has a school on the premises and is more set up for a long term stay, and he has been on Clozaril for the schizophrenic symptoms since early December. We have been told that this medication can take up to six months to work, and we are trying to come up with a plan for IVIG if the Clozaril does not help or if it doesn't help enough. My son has had four high dose IVIGs over the past couple of years and only the first one was helpful. He has significant immune deficiencies (low IGG, low IGA, and low IGM), and his DAN is in agreement with those immunologists who feel that low dose monthly IVIG is better for PANDAS kids who are also immune deficient and that high dose IVIG can sometimes exacerbate symptoms for kids with these deficiencies. A few of the immunologists she has spoken to strongly disagree with this position, but my husband and are willing to try low dose monthly IVIG at some point after our son becomes stable enough to go for these treatments, since the last high dose IVIG he had did not help at all with the schizophrenic symptoms or anything else; it only made him worse. His DAN did say that if he responds well to the low dose, then we could gradually build to higher doses in time. I know that every kid is different in how they respond to IVIG, but if you are finding that high dose is no longer working for her, it might be worthwhile to try it this way. I would also be really interested in finding out from others on the forum if low dose monthly IVIG has been helpful for immune deficient kids and if so, how long it takes to start to see improvements.

 

Ellen

 

 

Ellen, does you son still have his tonsils?

 

Also, have they checked his Toxoplasmosis titers?

 

have you seen this Ellen?

http://www.independent.co.uk/news/science/scientists-shocked-to-find-antibiotics-alleviate-symptoms-of-schizophrenia-7469121.html

 

here's a bit of the article:

A cheap antibiotic normally prescribed to teenagers for acne is to be tested as a treatment to alleviate the symptoms of psychosis in patients with schizophrenia, in a trial that could advance scientific understanding of the causes of mental illness.

 

The National Institute for Health Research is funding a £1.9m trial of minocycline, which will begin recruiting patients in the UK next month. The research follows case reports from Japan in which the drug was prescribed to patients with schizophrenia who had infections and led to dramatic improvements in their psychotic symptoms.

 

The chance observation caused researchers to test the drug in patients with schizophrenia around the world. Trials in Israel, Pakistan and Brazil have shown significant improvement in patients treated with the drug.

 

 

Also, re the tonsils...I don't know if I would count on titers to tell you if they were infected. It seems like so many PANDAS kids have strep w/out titers. Also, there may be non-strep pathogens hiding out causing problems in the tonsils. It's hard to say. There are a couple of PANDAS docs that recommend T/A, but not all. It's something to consider. There are kdis on this forum that have had normal sized tonsils removed, and they have wound up being shrunken from infection.

 

Also, have you seen this article (probably?) http://www.theatlantic.com/magazine/archive/2012/03/how-your-cat-is-making-you-crazy/8873/2/?single_page=true

not sure how to treat the toxo?

 

Here's one

http://www.sciencedirect.com/science/article/pii/S0920996402003572

 

We tested 12 neuroleptic compounds and found that of these, the antipsychotic haloperidol and the mood stabilizer valproic acid most effectively inhibit Toxoplasma growth in vitro. Valproic acid inhibited the parasite at a concentration below that found in the cerebrospinal fluid and blood of individuals being treated with this medication and displayed synergistic activity with haloperidol and with trimethoprim, an antibiotic commonly used to treat Toxoplasma infections.

 

Several medications used to treat schizophrenia and bipolar disorder have the ability to inhibit the in vitro replication of T. gondii.

 

and another

http://www.springerlink.com/content/hw1jpjl0wv7qh6yc/

 

We investigated the levels of antibodies to infectious agents in the serum and cerebral spinal fluids (CSFs) of individuals with recent onset schizophrenia and compared these levels to those of controls without psychiatric disease. We found that untreated individuals with recent onset schizophrenia had significantly increased levels of serum and CSF IgG antibody to cytomegalovirus and Toxoplasma gondii as compared to controls. The levels of serum IgM class antibodies to these agents were not increased. Untreated individuals with recent onset schizophrenia also had significantly lower levels of serum antibody to human herpesvirus type 6 and varicella zoster virus as compared to controls. Levels of antibodies to herpes simplex virus type 1, herpes simplex virus type 2, and Epstein Barr virus, and did not differ from cases and controls.

We also found that treatment status had a major effect on the levels of antibodies in this population. Individuals who were receiving treatment had lower levels of antibodies to cytomegalovirus and Toxoplasma gondii, and higher levels of serum antibodies to human herpesvirus type 6 as compared to untreated individuals. The level of antibodies to Toxoplasma and human herpesvirus type 6 measured in treated individuals did not differ from the levels measured in controls. In the case of cytomegalovirus, the levels of CSF antibodies in treated individuals did not differ from those of controls, while the level of serum IgG antibodies to CMV remained slightly greater than controls in this population.

Our studies indicate that untreated individuals with recent onset schizophrenia have altered levels of antibodies to cytomegalovirus, Toxoplasma gondii, and human herpesvirus type 6 while the levels of these antibodies in treated individuals with recent onset schizophrenia are similar to those of controls. These findings indicate that infectious agents may play a role in the etiopathogenesis of some cases of schizophrenia.

Edited March 5, 2012 by EAMom