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Pneumovax for Family?


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HI all -

 

Looking for input. I am still just a couple of months new to this forum, but much has happened. Oldest DS in process of officially being dx'ed w/ PANDAS (has had for many years). He has been escalated to a well-known university med center neuro psych dept. They have already reviewed his case and want to take it on. We may still need to veer to a PANDAS doc but are following this route (with insurance) for the time being.. In the course of testing he was found to have CVID - common variable immuno deficiency - his is low IGM, IGg2 and IGg4.

 

Since then, DS 19 and myself have been tested and both found to have CVID. DS19 presents exactly the same deficiencies as his brother but even lower values. He does not have symptoms of PANDAS, but does have other health challenges. I have low IGA and low IGg1. I have another DS17 who does have symptoms of PANDAS, but much more under control than oldest son. He has not yet been tested, but will soon and may follow what we decide to do. He is also leaving for college in the Fall and has been asked to receive the Menningitis vaccine.

 

The immunologist also determined that all of us have very low or undetectable levels of iGg antibodies for STREP PNEUMONIAE. He wants to vaccinate all of us with the PNEUMOVAX, and 4-6 weeks after we receive this vaccine, recheck our titers to see if our bodies responded appropriately by making antibodies against STREP PNEUMONIAE. Probably a standard response, but I have developed a mistrust of vaccines and although the boys received all childhood vaccines of the times up to 12, I have opted out since.

 

Q - does this seem like a good thing to do, particularly with the oldest? I also should mention that we do have a family member who developed Guillan-Barre after receiving a swine flu vaccine in the 80's - so I have seen first-hand the damage that can result from a vaccination reaction.

 

Vaccinate for the tracking info, or not? I am torn. If we don't, any input on how to gather the same info from another direction?

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I would not vaccinate if I were you. I know of a girl whose PANDAS became much worse after she got the pneumovax. I know of others with PANDAS who got worse from the meningitis vaccine. My son had his first PANDAS episode after a strep when he was ten, but he got much much much worse after receiving two vaccines (Chicken Pox and Hep A) seven months later. In his case, the consequences have been devastating. You were smart to develop a mistrust and opt out. When my son had the vaccines, it was five years ago and I did not have anyone to warn me that this could be harmful for kids with PANDAS. Even though my son had many interventions and a few years of good improvements, setbacks caused by a broken arm and the puberty process eventually led to a psychotic break and he is currently in the hospital with schizophrenic symptoms. I do believe the vaccines he had five years ago set all of this in motion; he has never been the same since and the most obvious sign that the vaccines did this was that he was having trance-like spacing out episodes that could last up to five minutes at a time along with many other major unusual symptoms within three weeks of those vaccines. Don't do it. There is nothing I can do to undo the damage that was done to my son from these vaccines (although we keep trying), but I have made it my personal mission to warn other PANS parents and anyone else with autoimmune issues about the risks. Please just don't vaccinate. It may not just cause a temporary worsening but a more permanent change as in my son's case. It is not worth taking the chance.

 

Ellen

 

 

HI all -

 

Looking for input. I am still just a couple of months new to this forum, but much has happened. Oldest DS in process of officially being dx'ed w/ PANDAS (has had for many years). He has been escalated to a well-known university med center neuro psych dept. They have already reviewed his case and want to take it on. We may still need to veer to a PANDAS doc but are following this route (with insurance) for the time being.. In the course of testing he was found to have CVID - common variable immuno deficiency - his is low IGM, IGg2 and IGg4.

 

Since then, DS 19 and myself have been tested and both found to have CVID. DS19 presents exactly the same deficiencies as his brother but even lower values. He does not have symptoms of PANDAS, but does have other health challenges. I have low IGA and low IGg1. I have another DS17 who does have symptoms of PANDAS, but much more under control than oldest son. He has not yet been tested, but will soon and may follow what we decide to do. He is also leaving for college in the Fall and has been asked to receive the Menningitis vaccine.

 

The immunologist also determined that all of us have very low or undetectable levels of iGg antibodies for STREP PNEUMONIAE. He wants to vaccinate all of us with the PNEUMOVAX, and 4-6 weeks after we receive this vaccine, recheck our titers to see if our bodies responded appropriately by making antibodies against STREP PNEUMONIAE. Probably a standard response, but I have developed a mistrust of vaccines and although the boys received all childhood vaccines of the times up to 12, I have opted out since.

 

Q - does this seem like a good thing to do, particularly with the oldest? I also should mention that we do have a family member who developed Guillan-Barre after receiving a swine flu vaccine in the 80's - so I have seen first-hand the damage that can result from a vaccination reaction.

 

Vaccinate for the tracking info, or not? I am torn. If we don't, any input on how to gather the same info from another direction?

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Ellen- thank you for this. The menigococcal vax is one that we will be looking at in the near future. I don't want to do it, but as we get farther from our kids worst- I feel more like I might consider it. Thank you for the reminder of what is at stake.

 

Please let your son know we are all pulling for him. He deserves more than this- and I know he will fully recover- hopefully soon. I am thinking of you, and hope you are managing the best that you can.

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I don't know enough about the effects of various vaccinations, but I can tell you that my son's PANS/PANDAS symptoms first began after he received both the swine flu vaccination and the regular flu vaccination at the same Dr's. visit. It actually was about 3 weeks after the actual vaccination that I began to notice facial tics, obessesiveness, etc. And possibly completely unrelated, but my daughter had the same vaccinations that day. With in a couple of months, she began complaining of vision problems. We took her to an eye Dr. and yes she was near sighted, but he also found a 'freckle' on her eye (behind the retina) which in the last year is being treated as possible cancer. We will be going down to the eye institute in Miami again in two weeks to see if the Specialist deems it necessary to do radiation. It has grown, that we know for sure. Eye freckles on children is very rare, and for them to grow is even more rare! It's pretty coincicental in my opinion......

 

But I will pray for your children and for you to be given wisdom to make the right decision.

 

Trish

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I was always pro-vaccine before all of the Pandas stuff started. That being said, I would never let either of my kids get more than one vaccine at a time, long before I even knew Pandas existed. I just felt that there was enough controversy to take it slowly. The doctor would always give me some sort of lecture, but I blew her off and said "I'll just pay the extra copay, I don't care. But there's no way you're giving her more than one today." She gave me dirty looks, but oh well..........She pretty much thought I was crazy, but it wasn't her kid.......

 

 

My daughter's second episode of severe chorea/tics started less than a week after she rec'd the meningitis vaccine (which is required here for school,and at the time, I was ok with it). Both kids tested positive for strep that time. Was it a coincidence? I don't know. But she went from being symptom free for months to a guerney on the ER pretty quickly, and in the back of my mind, I will always wonder. Neuro said no more vaccines, ever. The timing was awfully suspicious, and there is now enough doubt in my mind that I don't think I will ever let her get another vaccine.

 

 

All that being said, I had to recently update my tetanus shot due to an incident at work, and did, and she was ok. I also have to update my hepatitis shots for the same reason, but I am waiting a little longer on that. I didn't notice any exacerbation with daughter when I did this.

 

Younger daughter will need additional vaccines in another year or so, but again, I will space them out.

 

Overall, I generally do believe in vaccines for overall healthy people, like me, but Pandas is a whole other ballgame, and I think it really, really, really, requires serious consideration. I totally understand your hesitation.

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The best advice I did not follow is to never let someone else's knowing supersede your mom intuition. The Dr. may know what to do...but you as the mom will live forever knowing what you did or didn't do. Not that you should ever feel guilty but knowing that is what is up for grabs makes any decision clearer. When you doubt your intuition, it is sometimes a good idea to look for facts to support it until you get very clear that you know best.

 

The next thing you need to make a decision is information. In what percentage of cases does this vaccine actually generate subsequent immunity? Do we have a clear understanding of the mechanism of this vaccination long term in those who have compromised immunity? How long will this vaccine induced immunity actually last? Will we need a booster? I might also want to research the ingredients and warnings on the information packet of the vaccine much the same way I do all food that I eat. I might also compare the health of children in the 80s when we had few vaccines with the health of children today when we have dozens.

 

I would then ask myself some questions. If my child had an autoimmune disease, would I take them over someone's house that had strep? Pneumonia? Regardless of whether this is a live vaccine, all vaccines challenge your immune system just like that sick kid. That's their job. No one really knows what the vaccine does to a sick person, but my intuition tells me it isn't a good idea for my child and that's all that matters. You only have to decide for your child what is best with all the information you have at the time.

 

Best of luck as you make this decision. Once you do, take a supportive person with you to the appointment so that they can help you act on that decision with confidence and not back down.

 

Penny

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