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Immunologist Recommending Pneumovax


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QUOTE(nevergiveup @ Oct 18 2009, 12:02 PM) *

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.

I think this is exactly the protocol that the immunologist followed w/ my daughter 2 or 3 years ago. While I don't think the pneumovax did any damage to my child, once the immunologist got a response (it took 2 vaxes to get a response)- he was done with her. Not only that, he pronounced her "cured" and said this had jumpstarted her immune system. When the chronic strep (he declared her a "carrier") returned, we were sent back 1 more time- her pediatrician talked to the immunologist on the phone, asking about IVIG treatment...we were told that the IVIG would do nothing because she already had all the IgG she needed to fight infections. The decision seemed to be based completely on that pneumococcal test response.

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I think this is exactly the protocol that the immunologist followed w/ my daughter 2 or 3 years ago. While I don't think the pneumovax did any damage to my child, once the immunologist got a response (it took 2 vaxes to get a response)- he was done with her. Not only that, he pronounced her "cured" and said this had jumpstarted her immune system. When the chronic strep (he declared her a "carrier") returned, we were sent back 1 more time- her pediatrician talked to the immunologist on the phone, asking about IVIG treatment...we were told that the IVIG would do nothing because she already had all the IgG she needed to fight infections. The decision seemed to be based completely on that pneumococcal test response.

 

This is so interesting because we were assured we would only have to give it to him once. My husband looked it up on the Internet and found that Pneumovax is typically only given once in five years. After I spoke to the doctor and he wouldn't change his mind, my husband called him and was told if he failed the titers after Pneumovax he would be given IVIG monthly, although they didn't commit to a time period.

 

Nothing is clear to me in all this except that MUCH more research needs to be done and the doctors need to be educated.

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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 he 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).

 

Hi EAMom,

We saw Dr. E. Richard Stiehm and Dr. Roger Kobayashi at UCLA. They recommended the vaccine to diagnose Specific Antibody Deficiency because my son was within normal limits on all IGs and IGG subclasses. I'm guessing the recommendation to vax and test titers is based on his health history, plus the fact that he failed a number of the Prevnar titers. Also, they see it as a way to possibly protect him from a 7th pneumonia (if the vaccine works).

 

They did the vaccine down at Lucile Packard's pediatric pulmonology/immunology clinic because that's where our pulmonologist, Dr. Milla, is. Dr. Lewis is also getting into the picture now because I made an appointment with him for December when we thought we weren't going to do the vaccine. So he's the one who signed off on the vaccine order (and I found out from the lab tech had extra blood drawn for his "study" which we weren't told about before I asked what the extra vial was for - will be curious to find out what that's all about.)

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Shaes mom ,

 

 

The pnuemovax is to test to see if a titers response is achieved. It is a test to qualify a polysacchoroid immune def. Your doctors are just following stand protocol for diagnosis. Nothing special. I will not change my stance, if we are here to protect the kids then the facts need to be stated. This vaccine could cause some kids to relapse. PERIOD. It has happened in the past. This is how the doctors check to see if the child creates a proper immune response. If the vaccine is given and the child produces titers then they do not have the deficiency. PERIOD. I am insulted by your response, you really want PANDAS kids running out to get this vaccine to try and justify IVIG? With lower IGG's this TEST is not necessary. Parents need to know this. This forum is not worth our time if we cannot honestly talk on here without insults. This vaccine is given to test the kids immune system. If they respond to the vaccine they are NOT immunodeficient. If there are alternatives PARENTS should know. I am sure you think these immune docs are doing something special since you personally referred them, but sorry this is only Immune Doc 101, nothing out of the box. And somewhat risky I might add considering

Newer docs don't require this. Don't forget the doc also said insurance won't cover this if they don't vaccinate first. So was this a DOC decision or insurance. This doc already knew the child would fail the test, but for insurance he put the kid at risk. I disagree with this protocol.

 

 

 

 

 

quote name='ShaesMom' date='Oct 18 2009, 01:32 PM' post='41477']

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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We see Dr. Lewis on Thursday and I'll be curious as to 'THE STUDY'.

 

I'm also going to send my son's friend to him 'the one who had Scarlet Fever when our kids got sick' and who is also PANDAS. Our son's friend recent Anti-DNase-B was 680, his CaM Kinase was 147, he failed 12 of 14 pnumococcal titers and was exposed to strep 8 days ago (was on 5 day Predisone steroid burst when exposed). As a result, Dr. Lewis is hopefully starting to see similarities between children.

 

I'll let you know what happens.

 

-Wendy

 

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 he 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).

 

Hi EAMom,

We saw Dr. E. Richard Stiehm and Dr. Roger Kobayashi at UCLA. They recommended the vaccine to diagnose Specific Antibody Deficiency because my son was within normal limits on all IGs and IGG subclasses. I'm guessing the recommendation to vax and test titers is based on his health history, plus the fact that he failed a number of the Prevnar titers. Also, they see it as a way to possibly protect him from a 7th pneumonia (if the vaccine works).

 

They did the vaccine down at Lucile Packard's pediatric pulmonology/immunology clinic because that's where our pulmonologist, Dr. Milla, is. Dr. Lewis is also getting into the picture now because I made an appointment with him for December when we thought we weren't going to do the vaccine. So he's the one who signed off on the vaccine order (and I found out from the lab tech had extra blood drawn for his "study" which we weren't told about before I asked what the extra vial was for - will be curious to find out what that's all about.)

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If doctors are diagnosing immunodeficency by revaccinating and this is not good for our children, how should they be diagnosing? By just the original titer results themselves? And if you have a doctor, who may not be a PANDAS specialist (since those can be hard to come by at this point) but who is PANDAS interested and is learning and wants to do the right thing, what papers or documents can be provided to help? Our immunologist is now looking for a way to get IVIG covered since she knows that my dd needs it.

 

My dd so far the only "test" my dd has "failed" is the pneumoccal titers.

 

Shaesmom, thank you for your response post which I did not find insulting in any way. I know you were not suggesting that we all run out and revaccinate our children but you do know that this is something many of us are up against!

 

Susan

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In my opinion......it is not worth the risk. No vaccinations over here.....I know it is a personal decision with many different factors to consider for each child.....and I know, Mom2Alex, that you guys probably agonized over what to do and had to take into other factors your child is dealing with (frequent Pneumonia)....I pray he does well and that you guys get the help you need!!!

 

I can't get out of my mind speaking to Janice Zuilli on the phone and how she was still beating herself up to this day about giving her daughter that shot....she said her daughter was great after Pex...then she got the Pneumovax to help protect against frequent sinus infections.....and she spiraled downward into a horrible PANDAS episode that did not respond to second PEX...had to be managed with psychotrophic meds for years. Too scary for me. That would lead me to believe that her daughter did respond to the vaccination and mounted a huge antibody response......perhaps the kids that get no PANDAS symptoms from the vaccine are the ones who don't respond to it....therefore..no antibodies...no PANDAS symptoms??!! But, how do you know what will happen??

 

I will search and search for a doc who is willing to listen, learn, and not require my child to be vaccinated in order to get treatment. I already have Latimer and Dr.k who will do this....but I am looking for one locally and I think I found one after 2 1/2 years!!!!! .......PANDAS SHOULD be enough to justify treatment.....we just have to search until we find the docs who know this or are willing to learn....and, who know vaccinating is very risky for these children.

 

Nevergiveup.....I didn't see anywhere in your post where you were passing judgement on someone else's decision. To me, you were stating some warnings and considerations regarding the vaccine.......and how it can actually hinder receiving IVIG, be harmful to our children, etc......... that to me is appreciated and what we are here for....to help and provide different opinions, knowledge, experience, etc. On the flip side, I also appreciate learning about these immune defs. and the possible correlation with PANDAS...it is interesting and I agree that it appears to be something some of these kids are dealing with in addition to their PANDAS........ it is something that definitely needs to be researched more!!! We need to be able to accept each others opinions without taking it personally and without feeling the need to be right or the need to try to convince people to "believe you" by offering up names, documents, etc.

 

If people don't agree with you...so be it...such is life!! (I am actually quite used to it now and can let it slide off my shoulders much easier than before this forum... :) )

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

 

 

:)

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NeverGiveUp,

 

I wanted to respond to some of your questions and comments and also ask a few questions. It sounds like you have some good information and statistics that I was unable to find before we made this decision.

 

I want to say first that it was never my intention to recommend that others get this vaccination, but just to give an update on where we are. I’m as scared of it as anybody. The decision was so difficult for us – the risk of a terrible PANDAS exacerbation on the one hand, the risk of death on the other. My responses below are not intended to make a point, or convince anyone else to do what we did – just to further clarify our situation.

 

Here are my questions and responses:

 

“Dr. Bouboulis treats kids from Leckman with PANDAS and has seen adverse PANDAS reactions from this vaccine.” - Do you have more details on what the reactions were, how long after the vaccine, and how many kids? Who is Dr. Bouboulis (and what state)?

 

“an adverse response 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.” - We are praying this doesn’t happen, but whatever diagnosis we do or don’t get from the immunologists, we will be doing IVIG within 6 weeks or so, so hopefully this would be averted.

 

“Elizabeth's immun doc in Boulder.” – Do you have a name? I would be interested in contacting them.

 

“IVIG is covered with chronic pnemonia and low IGGs, ITS COVERED by all major health insurance. “ – Our son doesn’t have low IGGs, just recurrent pneumonia. We went through our policy with a fine tooth comb and it isn’t covered in our case, which is a bummer, but not our primary concern.

 

“the stats for PANDAS have SHOWN adverse reactions” - Can you post these stats? I would be very interested to see them and show my husband and the doctors. I attempted to do my own mini-survey, but only found 3 PANDAS parents who’d given their kids the Pneumovax. Two of the kids did fine, and one had a very bad PANDAS exacerbation.

 

“HOW many PANDAS kids has your immun doc treated?” – He’s seen 12 before us. He’s not an expert as far as I can tell, but he does believe it’s a real disorder and has some experience with it.

 

“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. “ Our primary goal isn’t to get insurance coverage, but to make sure our son is protected against pneumonia this winter as well as in the future and then treat his PANDAS. So if he gets the titers, we’ll be relieved, and will then head to Dr. K’s for IVIG out of pocket.

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Mama2Alex

 

Since your doc has treated 12 Pandas kids what does he say about outcomes? If you can get him to call Dr. Bouboulis (Dennis) and consult it looks like both are treating.

 

Your decision to vaccinate has to do with pnuemonia. And honestly after 6 pnuemonias I am appauled at our medical system that something wasn't done sooner.

I am not trying to tell YOU what to do just informing all those on this forum whom come on and make stmts like "my son failed 10 out of the 14 titers " Your poll on this forum is not justification that this vaccine is safe. Nor is the fact that after several days your child is fine mean that this vaccine does not create a high antibody response for Pandas kids. I know you weren't saying that but others seeing immunologist may feel that the vaccine is the way to go.

 

And it still maybe the way to go for some but I need to get the word out that Most immun docs when they see a child fail the titer test will IMMEDIATELY recommend this vaccine EVEN with low IGG's and subclasses. It is not required for IVIG in these cases if your child has a history of chronic infection. There are two ways to measure the immune system Quantity ( number of IGG's ). And Quality (does your child create a PROPER immune response and memory of bacteria and viruses). Many and most docs do not feel quantity is important rather quality. Just because your child fails the pnemoccocal titers DOES NOT MEAN ANYTHING. It only means MAYBE he hasn't got a good immune memory. LOTS of kids fail this test the first time. So a vaccination is done to test to see if titers go up. The child's titers is tested and if still low many docs recommend ANOTHER vaccine. In my fathers lifetime career he has rarely seen the titers stay low after the vaccine. This selective antibody def is rare. And parents need to understand this and the potential risks. Not everyone is getting an IVIG after this vaccine. Also you may want to check on this vaccine specifically because IVIG can render vaccines useless if given within 4 months. (Kind of makes you wonder though, did they give the vaccine to test since IVIG will inhibit its effectiveness anyway) Therefore your son may not be protected from strep pnue after IVIG again. Obviously if he doesn't mount a response ( titers failed after vaccine) this doesn't matter then because you will be receiving monthly IVIG's anyway. ( If he does mount a response will IVIG then ruin it? Ask your doc?).

 

Again, your personal medical history is very complicated and worth discussing on this forum just to get the word out for those looking at immune docs. I am not sure how many mothers after looking at your poll and your statement of how well he is doing after vaccine truly understood the implications of all of this.

 

The confusion arises because your son has a history of chronic infection and your decision to vaccinate was based off of that. Many on this forum are recommended to vaccinate TO TEST the childs immune system. Just because your child fails the titers test DOES NOT mean they will get strp pnuemonia. Many immune docs feel as long as ONE titer(out of 14) is above 2 then the child is most likely able to mount a response against pneumonia . This titers test has a long range of sensitivity.

 

I did not respond to your original poll first because your son may need the vaccine and he has a life threatening situation with his respiratory illnesses. ( Early Oct ). This was your own personal choice. (However monthly IVIG's would be my choice) This truly is separate from PANDAS and I did not want to scare you or get involved with your medical decision. However your sons medical HISTORY is what is most concerning, not his pnemoccocal titers test. Parents need to understand the difference. Many kids do not pass the titer test first time and most kids after revaccination mount an immune response. Without a LONG and dangerous history of chronic infection,most immun docs will not use this test as an indicator of an immune problem.

 

The vaccine has hurt Pandas kids and parents need to understand that the vaccine is given ROUTINELY to test for an immune response not always to prevent pneumonia. (*Although it does do both in many cases). You may have understood this but I wanted to make sure others did too.

 

Its complicated but in our current medical system doctors have 15 minutes per patient and are quick to recommend standard procedures. My daughter went in for her immune testing, and after her doctor got back her results, the nurse phoned me and said that I should have her Vaccinated and retested. The doctor will see you again after the vaccination and new blood draw. No conversation or anything. After I called and said no vaccines, my immun said ok well its not necessary anyway she can have IVIG with low IGG's.

 

It was that simple, also that frightening. Had I just obeyed orders who know where we would be now.

 

I will be thinking of you as you go through all of this. I know your son will do well. Many feel the kids with selective antibody defs have OCD and chorea not as a disease but rather are more symptoms of this immune disorder. There is one study in Immunology showing a case with complete remission of OCD and chorea after several IVIG's. Take care. If you want more info on the vaccine have your doc consult with Dennis Bouboulis.

 

 

 

 

 

 

 

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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nevergiveup- do you know what if any statistics there are about "normal healthy" kids failing the pneumococcal titers? I am under the impression the docs just don't know, and from that study regarding tylenol and vacs it seems like it could be high.

 

Here is why I ask: dd has always been healthy, no ear infections, few colds, very few antibiotics until pandas hit this year. I had all of her immune numbers done- they are all perfect. The lab did not do the pneumococcal titers (they changed it to a test for mycoplasme pneumonia for some frustrating reason). I plan to have her tested at some point, but, would failing pneumococcal titers with no history of illness (other than pandas) mean anything? (I absolutely won't vaccinate!)

 

Any thoughts?

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What tests were run, just normal IGG and subclass or did they did deeper? ANA, C3 and C4. T and B cells, vit D levels, any lupus markers? What was the myco plasm pneumonia titer level? Hey your kind of lucky to get that? I couldn't get anybody to run that. Without chronic infect and just a pnuemoccoal titers failure and NO other immune markers it will be hard to justify treatment without vaccinating and proving your sons CANNOT produce these antibodies. Retest though especially if you see your child getting more URI's than in the past. My daughter through years of chronic infection when she was 7 and 8 had normal IGG's, however by the time she was nine they dropped low and stayed low. Even after IVIG they dropped off again, pretty much validating in everyones mind she has an immune deficiency. From what I have been told, kids that fail the titers tests with normal immune systems normally will pass after revaccination. Hence your selective immune def is cured.

 

By the way, These tests (above) are SUPER expensive, they run my insurance after discount close to two thousand dollars each time. I don't think this should defer doing the test I just wanted to warn anyone who has a deductible or anyone who has used up their deductible this year and may want to run markers now so as not to pay out when new deductible rolls over in Jan

 

So as for stats I don't have any I can just comment on what my father has told me and my uncle whom are both going on a 30 years practicing immunology. (Thats 60 years total) Almost all kids who fail this test respond after vaccination therefore they do not have selective immune def. My father said it usually is pretty obvious those that won't respond to revaccination they are pretty sickly and there IGG's tend to be in the 300's. If my daughter had taken the vaccine my father felt she would have responded. However. She has PIDD and maybe selective antibody def but it wasn't a requirement for me to get treatment.

 

I would not give up though, see the immune doc run more tests, no one will make you vaccinate. You can make that call later. Also get the EMLA patch cream it is now generic and only 15 dollars and with kids who constantly get blood drawn this is such a relief for the kids. Obviously something is wrong with these kids immune systems and BBB, everyone will tell you that behind closed doors, however that doesn't mean they know what to do about it or how to treat.

 

Ley us know what happens.

 

 

 

 

.

Althoughcmom' date='Oct 19 2009, 08:38 AM' post='41558']

nevergiveup- do you know what if any statistics there are about "normal healthy" kids failing the pneumococcal titers? I am under the impression the docs just don't know, and from that study regarding tylenol and vacs it seems like it could be high.

 

Here is why I ask: dd has always been healthy, no ear infections, few colds, very few antibiotics until pandas hit this year. I had all of her immune numbers done- they are all perfect. The lab did not do the pneumococcal titers (they changed it to a test for mycoplasme pneumonia for some frustrating reason). I plan to have her tested at some point, but, would failing pneumococcal titers with no history of illness (other than pandas) mean anything? (I absolutely won't vaccinate!)

 

Any thoughts?

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as others have pointed out, antibody levels aren't the "end all" in effective protection. Titer levels might not indicate protection and low may not indicate that they won't respond to to natural infection adequately either. I see they speculate about increased efficacy when s pneumonia epitopes are conjugated with diptheria toxin, but no mention of the fact that alum is included in Prev. in this study. Curious

 

These are a couple of excerpts from the study

 

http://clinicaltrials.gov/archive/NCT00304382/2009_02_18

 

Streptococcus pneumoniae (pneumococcus) is the most common cause of pneumonia leading to hospitalization of adults. Resistance to infection is generally thought to be highly associated with antibody to the capsular polysaccharide (CPS). Most people who develop pneumococcal pneumonia lack antibody to the capsule of the infecting type. We have previously shown that some persons develop this infection despite the presence of antibody to the capsular polysaccharide of the infecting type. When such antibody is found, it tends to be poorly functional (DM Musher et al, J Infect Dis 182:158-167, 2000) in that it opsonizes pneumococci poorly for phagocytosis by human white blood cells in vitro, and protects mice poorly or not at all against challenge with the infecting organism.

 

and

 

During the past two years, with more active vaccination programs at our hospital, the proportion of pneumococcal pneumonia patients who have been vaccinated has increased to about 60%. Clearly, the vaccine has not provided a full degree of protection.

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I see they speculate about increased efficacy when s pneumonia epitopes are conjugated with diptheria toxin, but no mention of the fact that alum is included in Prev. in this study.

 

 

Kim,

do you think you could clarify this sentence? could you put it more simply for us slow folks :ph34r: . I have an idea, but want to hear first.

 

thanks

Faith

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My point exactly thanks for posting. Just because you failed the titers test does not mean you will be more susceptible to pneumonia. And just because you got the vaccine does not mean you won't get pneumonia. See the immune science is not well understood. Immunologists know this. Clinical presentation is critical with immune markers. Kind of sounds like the science of pandas also an immune disorder.

 

These docs follow std protocols, some may be more out of the box thinkers, some may be more aggresive. Some have their hands tied by insurance comp requirements.

 

 

 

 

name='kim' date='Oct 19 2009, 11:30 AM' post='41586']

as others have pointed out, antibody levels aren't the "end all" in effective protection. Titer levels might not indicate protection and low may not indicate that they won't respond to to natural infection adequately either. I see they speculate about increased efficacy when s pneumonia epitopes are conjugated with diptheria toxin, but no mention of the fact that alum is included in Prev. in this study. Curious

 

These are a couple of excerpts from the study

 

http://clinicaltrials.gov/archive/NCT00304382/2009_02_18

 

Streptococcus pneumoniae (pneumococcus) is the most common cause of pneumonia leading to hospitalization of adults. Resistance to infection is generally thought to be highly associated with antibody to the capsular polysaccharide (CPS). Most people who develop pneumococcal pneumonia lack antibody to the capsule of the infecting type. We have previously shown that some persons develop this infection despite the presence of antibody to the capsular polysaccharide of the infecting type. When such antibody is found, it tends to be poorly functional (DM Musher et al, J Infect Dis 182:158-167, 2000) in that it opsonizes pneumococci poorly for phagocytosis by human white blood cells in vitro, and protects mice poorly or not at all against challenge with the infecting organism.

 

and

 

During the past two years, with more active vaccination programs at our hospital, the proportion of pneumococcal pneumonia patients who have been vaccinated has increased to about 60%. Clearly, the vaccine has not provided a full degree of protection.

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