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Has anyone here had their PANDAS child vaccinated with Pneumovax (not Prevnar) in order to diagnose Selective Antibody Deficiency? We saw an immunologist on Monday who wants us to do this, but we are hesitating. It vaccinates against 23 serotypes of streptococcus pneumoniae, so you can see why this might make us nervous.

 

Our son has had pneumonia six times in five years, so we want to know if he has an immune deficiency, but don't want to take any unnecessary risks.

 

Any input would be most appreciated.

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two years ago my child had the pneumovax twice, since she didn't have a positive titer response after the first one. There were no side effects that I noticed but, we had a lot of things going on, in addition to PANDAS at the time. My child has never had pneumonia that I know of, though.

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I would email Dr K and see if he has any thoughts. Possibly consult a DAN doctor- although I am sure they would be against it...

 

I am deathly afraid of any vaccine for my dd at this point, but I know down the line some decisions will have to be made....

 

Is it live? If it is I wouldn't even consider it. Does it have thimerasol or mercury? Ditto for those.

 

I would really push the doctor about alternatives, maybe get a second opinion.

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I agree with dcmom. Our immunologist said our son had a weakened immune system just based on the fact that he failed 13 out of 14 of the S. Pneumonaie titers as well as askew T and B Cell Flow numbers. I would have your child tested for these titers before considering the vaccinations. Our doctor said that IVIG will raise these titers, if I understand him correctly.

 

Elizabeth

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This topic is near and dear to my heart since my dd failed many of the serotypes and our first immunologist said to revaccinate, our Dan! doc said no way. So we have a new immunologist who I am hoping can help us figure out what to do. We see her on the 14th and I will bring this up and report back. My hope is that if she is unsure she will discuss with Dr. K, etc.

 

Susan

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Has anyone here had their PANDAS child vaccinated with Pneumovax (not Prevnar) in order to diagnose Selective Antibody Deficiency? We saw an immunologist on Monday who wants us to do this, but we are hesitating. It vaccinates against 23 serotypes of streptococcus pneumoniae, so you can see why this might make us nervous.

 

Our son has had pneumonia six times in five years, so we want to know if he has an immune deficiency, but don't want to take any unnecessary risks.

 

Any input would be most appreciated.

 

Can you do the sinus xray you talked about and if that comes back negative tell the Immuno that right now you are against doing the Pneumovax and see if he will go ahead and try IVIG?

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Thanks to everyone for your feedback. I emailed Dr. K and he said it was our decision. Dr. Cunningham seemed to feel it was probably safe, but again, she couldn't really tell us. In the course of my discussions with other moms, I found out about a mom who's daughter had PEX and recovered, then a few months later was given Pneumovax for recurrent sinus infections. She had a severe PANDAS exacerbation (worse than the initial onset) and didn't recover for four years, even after a second round of PEX. She recovered when she got her first period. This was maybe eight years ago, but it tells me it can go either way.

 

All my instincts are telling me not to do the Pneumovax, and my husband says he agrees. The risk seems too high. We're going to ask the immunologist if he can make a diagnosis based on the sinus x-ray, existing s. pneumo titers and history of pneumonia, ear infections and upper respiratory infections. If not, we might get one more opinion before heading to Chicago for IVIG.

 

Here's what I'm wondering though: If he does have a Specific Antibody Deficiency to s. pneumoniae, can this be an indicator that (or cause of) he will not recover from PANDAS with one round of IVIG. It seems to me that a lot of parents whose kids are not fully recovering from one round of IVIG are going back and getting an immunology workup. That's why I'm hesitating to go ahead with IVIG until I get a definitive answer about his immune system.

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mama2alex-

 

These are such tough decisions. I know about the pandas mom you are talking about, and think it is good you decided against the immunization. It would be so hard to take that chance.

 

I have wondered the same thing as you. Why do some kids do beautifully with one course of PEX and/or IVIG, and others continue to relapse. Maybe it is that some have an underlying immune problem- maybe that needs to be addressed with more frequent IVIGs?

 

I hope you get the answers you need soon...

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Or is it two fold, underlying infection still persists and potentially the 'type' of antibiotic used isn't protective enough from continued exposure. I'm positive this is something they will figure out fairly rapidly.

 

I think it is wise to be safe rather than sorry with immunizations. The underlying immune issues and monitoring throughout childhood is something we intend to do until it appears his system is jump started and operating on its own. Margo wrote us all the lab requests including the IgG subclasses so we could have a baseline prior to IVIG to provide to ANY IMMUNOLOGISTS that understands PANDAS and willing to treat appropriate.

 

Thanks to this forum, we are very open to monthly IVIG if needed.

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  • 2 weeks later...

Wanted to update anyone who's interested, as we have changed course since I last posted on this. On Thursday (64 hours ago to be exact!) we gave our son the Pneumovax. So far, he is doing fine - no reaction whatsoever that we can see.

 

Before doing this I talked to one of the immunologists from UCLA to see if I could convince him to diagnose without the vaccine. He said his gut feeling is that Alex has Selective Antibody Deficiency, but that they couldn't make the diagnosis without definitive "biologic markers" (titers in response to the vaccine). It seems like they are under a lot of pressure from the insurance companies to be conservative in prescribing IVIG and not to diagnose based on "gut feelings."

 

For us, it came down to whether we could risk a 7th bout with pneumonia this winter, especially with H1N1 out there. We just couldn't. I think I've posted before that he's had pneumonia 6 times and has been hospitalized twice (with one ambulance ride). This way, if he mounts a response to the Pneumovax, he'll be protected from 23 types of pneumonia-causing bacteria. In that case, we will go straight to Dr. K for IVIG for the PANDAS. If he doesn't, I'm fairly sure the immunologists will prescribe monthly IVIG. Both choices (vaccinate/don't vaccinate) were risky for us. We're praying we made the right decision.

 

I wanted to post about this because I know there are several of you struggling with this decision. I am not advocating getting the shot, in fact in Jan. '08 Stanford wanted us to get this vaccine to test his titers and we opted not to. I think it's an extremely difficult and personal decision, and just wanted to share what's happening with us.

 

Thanks to everyone who responded previously to help me think this through.

 

Susan - How did your immunology appointment go?

 

DCMom - No, this was not a live vaccine and was not preserved with thimerisol.

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Wanted to update anyone who's interested, as we have changed course since I last posted on this. On Thursday (64 hours ago to be exact!) we gave our son the Pneumovax. So far, he is doing fine - no reaction whatsoever that we can see.

 

Before doing this I talked to one of the immunologists from UCLA to see if I could convince him to diagnose without the vaccine. He said his gut feeling is that Alex has Selective Antibody Deficiency, but that they couldn't make the diagnosis without definitive "biologic markers" (titers in response to the vaccine). It seems like they are under a lot of pressure from the insurance companies to be conservative in prescribing IVIG and not to diagnose based on "gut feelings."

 

For us, it came down to whether we could risk a 7th bout with pneumonia this winter, especially with H1N1 out there. We just couldn't. I think I've posted before that he's had pneumonia 6 times and has been hospitalized twice (with one ambulance ride). This way, if he mounts a response to the Pneumovax, he'll be protected from 23 types of pneumonia-causing bacteria. In that case, we will go straight to Dr. K for IVIG for the PANDAS. If he doesn't, I'm fairly sure the immunologists will prescribe monthly IVIG. Both choices (vaccinate/don't vaccinate) were risky for us. We're praying we made the right decision.

 

Susan - How did your immunology appointment go?

 

Hi, I am glad you are experiencing no reaction that is great! I hope it helps in getting you a diagnosis and helping figure out what is going on. I have a post with a small update somewhere but I think it may be on page 2 now. Our immunologist did not recommend revaccinating at this point. Since she didn't bring it up I decided not to bring it up but she is retesting our s. pneumo titers. She believes dd needs IVIG and now she's looking for a reason for the insurance companies. We talk again after the test results come back. She's testing for several things and I guess I'll just wait to see how it goes. Thanks for asking about us!

 

Susan

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PLEASE be aware that immunologists vaccinate with the pnemococal vaccine to diagnose secondary immune deficiency. Most kids who receive the vaccine do create a response and therefore DO NOT get IVIG. Its the insurance co requirement to eliminate costs. My father is an immunologist and rarely has ever seen a child after two vaccines not produce titer response. ( Then YOU cannot have IVIG ). It is standard protocol. They would recommend this without even considering or examining your child. In other word step A step B , it doesn't take a medical degree to follow insurance companies steps. The immunologists need to dig further for the PANDAS kids. Dr. Bouboulis treats kids from Leckman with PANDAS and has seen adverse PANDAS reactions from this vaccine. Immunologists who are not familiar with PANDAS should not be making statements like " I doubt it will hurt them". This is careless. If they don't believe in PANDAS how can they know whether it will hurt them. Antibody responses take two to three weeks to accumulate after a vaccine. Thats why the flu shot is not effective right away. So an adverse respone could take months for the antibodies to accumulate. Look at Sydehams Chorea it can take up to six months after strep for the autoimmune response to accumulate enough antibodies to cause the attack. I strongly recommend having your immunologist consult with the experts like bouboulis and Elizabeth's immun doc in Boulder. My father not knowing any better thought of giving this to my daughter and now he knows not to. My immunologist said it was not necessary to get IVIG. Primary immune def. IVIG is covered with chronic pnemonia and low IGGs, ITS COVERED by all major health insurance. My father didn't even know this because he had been following the same protocol for so long he never checked into it. I am glad your son is fine, but the stats for PANDAS have SHOWN adverse reactions and I DO NOT think it should be recommended to anyone on this forum. HOW many PANDAS kids has your immun doc treated??????? Mine has never treated a PANDAS kids and is careful not to assume she knows what is going on with her immune system.

 

I will say it again. PANDAS EXPERTS need to be consulted BEFORE this vaccine should be considered. It has caused adverse reactions!

It is not required to get IVIG, it is though one way to get insurance NOT to cover IVIG, especially if after the vaccine your kid gets the titers. AND as my father stated it is extremely RARE to fail the titers test after the vaccine is administered.

 

 

 

'mama2alex' date='Oct 18 2009, 09:41 AM' post='41452']

Wanted to update anyone who's interested, as we have changed course since I last posted on this. On Thursday (64 hours ago to be exact!) we gave our son the Pneumovax. So far, he is doing fine - no reaction whatsoever that we can see.

 

Before doing this I talked to one of the immunologists from UCLA to see if I could convince him to diagnose without the vaccine. He said his gut feeling is that Alex has Selective Antibody Deficiency, but that they couldn't make the diagnosis without definitive "biologic markers" (titers in response to the vaccine). It seems like they are under a lot of pressure from the insurance companies to be conservative in prescribing IVIG and not to diagnose based on "gut feelings."

 

For us, it came down to whether we could risk a 7th bout with pneumonia this winter, especially with H1N1 out there. We just couldn't. I think I've posted before that he's had pneumonia 6 times and has been hospitalized twice (with one ambulance ride). This way, if he mounts a response to the Pneumovax, he'll be protected from 23 types of pneumonia-causing bacteria. In that case, we will go straight to Dr. K for IVIG for the PANDAS. If he doesn't, I'm fairly sure the immunologists will prescribe monthly IVIG. Both choices (vaccinate/don't vaccinate) were risky for us. We're praying we made the right decision.

 

I wanted to post about this because I know there are several of you struggling with this decision. I am not advocating getting the shot, in fact in Jan. '08 Stanford wanted us to get this vaccine to test his titers and we opted not to. I think it's an extremely difficult and personal decision, and just wanted to share what's happening with us.

 

Thanks to everyone who responded previously to help me think this through.

 

Susan - How did your immunology appointment go?

 

DCMom - No, this was not a live vaccine and was not preserved with thimerisol.

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Hi Mama2alex,

 

I'm curious as to which immunologist recommended the re-vax. (We're also in Northern CA.) Dd failed most of our pnumococcal titers but our immunologist didn't rec. re-vax. However, he didn't feel the failure was particularly significant since it had been so long since vaccination (she's 9). Our did did have 5 (yes 1 extra) prevnars as a baby. Whether her results are significant or not, I don't really know. It seems like immunologists really all have different opnions on this.

 

Our immunologist agreed to IVIG based on our Dr. Cunningham test results.

 

I don't actually think our dd has any sort of broader immune deficiency...aside from PANDAS she's been a pretty healthy kid (no problems with chronic pneumonias, ear infections etc.) I think for us the big issue was untreated strep infections (she doesn't get a sore throat with strep, so all fevers were presumed viral and no strep tests were done until she we 7.5 years and in the hospital due to pandas anorexia).

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Nevergiveup-I'm not really sure your statement "immunologists vaccinate with the pneumococcal vaccine to diagnose secondary immune deficiency" is correct. Maybe that is how your Father dx's SID but not all Immunolgists do this.

 

It is often standard practice among Immuno's to revax with Pneumovax prior to giving a dx of Selective Antibody Deficiency and even CVID. If you don't believe me I'll be happy to give you the phone number of my Immuno who is recognized as a leader in the industry by IDF and a professor at UCLA who consulted on Mama2Alex's son case. I can also direct you to a forum for CVID patient's who will also tell you that it is common to be revaxed and it has nothing to do with secondary immune deficiency.

 

I must say your post appears to have a lot of assumptions regarding how much research and knowledge both Mama2Alex and her doctor's have. I know her family has agonized over this decision and has not taken it lightly in any regard. I believe in the case of her son they are not only dealing with Pandas but also a child who has repeatedly had Pneumonia and been hosiptalized. I believe they are doing what is in his best interest to not only treat his Pandas but his overall health issues and prevent future illness.

 

I would hope that your Immunologist would have SOME idea what is going on in your child's immune system since this is her speciality.

 

I think it is important that we ALWAYS support each other and never offer such judgement for another's decisions.

 

Definition from Immune Deficiency Foundation's publication:

When

the damage is caused by an extrinsic force, such

as an environmental factor or agent, it is called

a secondary immune deficiency disease. For

example, AIDS is a secondary immune deficiency

disease caused by the HIV virus. Secondary

immune deficiencies can also be caused by

irradiation, chemotherapy, malnutrition, and burns.

 

http://www.primaryimmune.org/publications/...pats/e_ch01.pdf

 

 

PLEASE be aware that immunologists vaccinate with the pnemococal vaccine to diagnose secondary immune deficiency. Most kids who receive the vaccine do create a response and therefore DO NOT get IVIG. Its the insurance co requirement to eliminate costs. My father is an immunologist and rarely has ever seen a child after two vaccines not produce titer response. ( Then YOU cannot have IVIG ). It is standard protocol. They would recommend this without even considering or examining your child. In other word step A step B , it doesn't take a medical degree to follow insurance companies steps. The immunologists need to dig further for the PANDAS kids. Dr. Bouboulis treats kids from Leckman with PANDAS and has seen adverse PANDAS reactions from this vaccine. Immunologists who are not familiar with PANDAS should not be making statements like " I doubt it will hurt them". This is careless. If they don't believe in PANDAS how can they know whether it will hurt them. Antibody responses take two to three weeks to accumulate after a vaccine. Thats why the flu shot is not effective right away. So an adverse respone could take months for the antibodies to accumulate. Look at Sydehams Chorea it can take up to six months after strep for the autoimmune response to accumulate enough antibodies to cause the attack. I strongly recommend having your immunologist consult with the experts like bouboulis and Elizabeth's immun doc in Boulder. My father not knowing any better thought of giving this to my daughter and now he knows not to. My immunologist said it was not necessary to get IVIG. Primary immune def. IVIG is covered with chronic pnemonia and low IGGs, ITS COVERED by all major health insurance. My father didn't even know this because he had been following the same protocol for so long he never checked into it. I am glad your son is fine, but the stats for PANDAS have SHOWN adverse reactions and I DO NOT think it should be recommended to anyone on this forum. HOW many PANDAS kids has your immun doc treated??????? Mine has never treated a PANDAS kids and is careful not to assume she knows what is going on with her immune system.

 

I will say it again. PANDAS EXPERTS need to be consulted BEFORE this vaccine should be considered. It has caused adverse reactions!

It is not required to get IVIG, it is though one way to get insurance NOT to cover IVIG, especially if after the vaccine your kid gets the titers. AND as my father stated it is extremely RARE to fail the titers test after the vaccine is administered.

 

 

 

'mama2alex' date='Oct 18 2009, 09:41 AM' post='41452']

Wanted to update anyone who's interested, as we have changed course since I last posted on this. On Thursday (64 hours ago to be exact!) we gave our son the Pneumovax. So far, he is doing fine - no reaction whatsoever that we can see.

 

Before doing this I talked to one of the immunologists from UCLA to see if I could convince him to diagnose without the vaccine. He said his gut feeling is that Alex has Selective Antibody Deficiency, but that they couldn't make the diagnosis without definitive "biologic markers" (titers in response to the vaccine). It seems like they are under a lot of pressure from the insurance companies to be conservative in prescribing IVIG and not to diagnose based on "gut feelings."

 

For us, it came down to whether we could risk a 7th bout with pneumonia this winter, especially with H1N1 out there. We just couldn't. I think I've posted before that he's had pneumonia 6 times and has been hospitalized twice (with one ambulance ride). This way, if he mounts a response to the Pneumovax, he'll be protected from 23 types of pneumonia-causing bacteria. In that case, we will go straight to Dr. K for IVIG for the PANDAS. If he doesn't, I'm fairly sure the immunologists will prescribe monthly IVIG. Both choices (vaccinate/don't vaccinate) were risky for us. We're praying we made the right decision.

 

I wanted to post about this because I know there are several of you struggling with this decision. I am not advocating getting the shot, in fact in Jan. '08 Stanford wanted us to get this vaccine to test his titers and we opted not to. I think it's an extremely difficult and personal decision, and just wanted to share what's happening with us.

 

Thanks to everyone who responded previously to help me think this through.

 

Susan - How did your immunology appointment go?

 

DCMom - No, this was not a live vaccine and was not preserved with thimerisol.

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