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It seems as though many of you have multiple children with PANDAS. Those who have more than one child, how many have more than one with PANDAS? My daughter is 5 and she has it. My son is 2 and doesn't yet....I am concerned because he already has some OCD tendencies. Just curious really. Thanks!

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I know and have talked to two families (not on this forum) that each have two children with pandas. In one family, the children have suffered greatly, and they both went quite a while before initial diagnosis. Those children are now teenagers. In the other family both children were treated with plasma pheresis (one about 9 years ago, one about 9 mos ago), and it has, so far, been a cure for them.

 

It sure makes me think.

 

Both of my kids are perfectionists. My pandas dd is the younger one, I have an eight year old, who is fine, so far.

 

As per my neurologist (and to ease my own mind), I am working on having them see a ped cardiologist to rule out any cardiac involvement. All doctors have said it is rare to have pandas w/ any cardiac problems- but I can't help thinking they are both succeptible to complications of strep. My older daughter had her tonsils out two years ago after a case of strep left them swollen and infected, causing sleep apnea.

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I am sure my five-year-old pandas daughter is due for some vaccinations this year.

 

Should I be concerned? Are there some that are worse than others?

 

I certainly don't want to not vaccinate her.... I feel like I have been researching pandas with every available minute, am a little overwhelmed, and the thought of researching vaccines has me running out of steam. Can anyone offer their insight?

 

My pediatrician is useless, should I consult a DAN doctor? Can anyone suggest one in the DC area?

 

Thank you.

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I definitely wonder about it with my 4 year old who has some OCD tendencies and am keeping an eye on him. It's my 7 year old who has PANDAS. What are you going to have the cardiologist look at? I'm curious as my guy has been complaining of heart pains and changes in his heart rate recently. Our DAN! doc believes that something is happening with his heart and we have speculated that it could be due to PANDAS. He also thinks it may be due to lack of magnesium and potassium or Taurine. I wonder if it's a reaction to the Amantadine he's had him on to help with the ADHD behaviors the latest PANDAS episode brought on. We've done some blood tests and are reducing tha Amantadine and increasing the Taurine. We are going to see what the blood tests show and see if these changes make a difference and if not, do an echocardiogram. I'll be curious to hear what you find.

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I am sure my five-year-old pandas daughter is due for some vaccinations this year.

 

Should I be concerned? Are there some that are worse than others?

 

I certainly don't want to not vaccinate her.... I feel like I have been researching pandas with every available minute, am a little overwhelmed, and the thought of researching vaccines has me running out of steam. Can anyone offer their insight?

 

My pediatrician is useless, should I consult a DAN doctor? Can anyone suggest one in the DC area?

 

Thank you.

 

I am very cautious about any vaccinating now that I've researched it so thoroughly. My 7 year old was hospitalized after his MMR and I am one of the moms who believe vaccines have played a big role in my children's health issues. We have yet to vaccinate our 2 year old daughter at all. The boys were both fully vaccinated except that my 4 year old hasn't had an MMR. We will give our daughter just a couple of vaccines when she is 3, but will do it with serious reservations. I just know too much now to feel safe with the vaccine system.

 

You can always have your daughter's titers checked to see if she could even benefit from any boosters that she might be due for at age 5. The ARI website has some great info on vaccines as does generation rescue. If you decide to vaccinate further, make sure she is completely healthy first and space them out. I'm in Washington State so don't have any ideas of a doc in your area.

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I too feel really exhausted at the prospect of researching vaccines!!

 

Should I just tell my ped. that I will vaccinate my infant son (don't want to start a fight), but want to delay the vaccinations? Up until now he has had his vaccinations when recommended, but I think at 1 year he's due for some big ones and I want to wait.

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I know and have talked to two families (not on this forum) that each have two children with pandas. In one family, the children have suffered greatly, and they both went quite a while before initial diagnosis. Those children are now teenagers. In the other family both children were treated with plasma pheresis (one about 9 years ago, one about 9 mos ago), and it has, so far, been a cure for them.

 

It sure makes me think.

 

Both of my kids are perfectionists. My pandas dd is the younger one, I have an eight year old, who is fine, so far.

 

As per my neurologist (and to ease my own mind), I am working on having them see a ped cardiologist to rule out any cardiac involvement. All doctors have said it is rare to have pandas w/ any cardiac problems- but I can't help thinking they are both succeptible to complications of strep. My older daughter had her tonsils out two years ago after a case of strep left them swollen and infected, causing sleep apnea.

 

That is interesting about the cardiologist. I haven't heard of a link between the two. The circuit of doctors that we have seen so far have indicated that the plasma pheresis treatments are very painful and that there isn't enough evidence to prove that they really work. Your story really does make me think also.

 

I know of a family who has twin girls, who are now 9. When they were 5, one of them was diagnosed with PANDAS. The other twin never had any problems. Their PANDAS daughter is now doing great. She does have some resultant issues, but after the initial episode she did not have another. She was treated with antibiotics at the time, but hasn't had to use them consistently.

 

We have vaccinated our daughter fully up until this point. She has a well check on the 15th of this month. I am sure she is due for some more before kindergarten. I have to be honest, I haven't done any research on vaccines either. I am obsessed with reasearching the PANDAS at the moment.

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I was reading a website that mentioned vaccines as relates to a specific case. I thought I would share. Knowing how much research all of you have done, I am sure that you have seen this website.

 

http://e-pandas.com/index.html

 

Q: WHAT ABOUT VACCINATING MY PANDAS CHILD?

 

A: Although there is no research on vaccines and PANDAS, because the PANDAS mechanism is autoimmune in its course, vaccinations should be carefully considered. Vaccines are intended to stimulate the immune system to produce antibodies to specific microbes thereby preventing future disease. The key process here is "stimulating" the immune system. In PANDAS, after the initial onset of symptoms, any immune response can exacerbate symptoms. Therefore, vaccines can be a major culprit of symptom excerabation and possible damage. In the case of Nicolette, a pneumococcal polysaccharide vaccine (PPV), thought to prevent/limit chronic sinusitis which also causes symptom exacerbation, acutely exacerbated her PANDAS symptoms. The recurrent symptoms were more severe than those of the initial onset which themselves were completely debilitating. It was thought that the vaccine should not have caused this reaction, and after further research, the same opinion was maintained. Nonetheless, Nicolette was mentally incapicated by this shot. Her doctors were of the opinion that symptoms would taper with a decline in antibodies over a 6 week period. This did not happen. Instead, symptoms presisted for months without relief. Because of the severity of the adverse vaccine reaction, unsually, a second round of plasmapheresis was performed; however, as expected, without positive results. The vaccine further complicated Nicolette's medication regimen and remission of symptoms was not achieved before one year. The vaccine process was definitely harmful, and I would strongly caution against vaccinating with PPV. As for other childhood vaccines, because PANDAS usually occurs around the age of 8, most children have already received most all of there immunizations. However in the case of younger PANDAS children, the risk/benefit should be carefully considered. I would not vaccinate a PANDAS child unless it was a life threatening situation or until the Disorder was well in remission.

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I too feel really exhausted at the prospect of researching vaccines!!

 

Should I just tell my ped. that I will vaccinate my infant son (don't want to start a fight), but want to delay the vaccinations? Up until now he has had his vaccinations when recommended, but I think at 1 year he's due for some big ones and I want to wait.

 

You can tell your Ped that you are planning to delay any further vaccinations. He would be due for his MMR soon. That is the one who caused my son's hospital stay, chronic stomach issues, and we believe jump-started the autism symptoms. www.generationrescue.org includes a slower schedule which is recommended by a physician at the University of Washington. It includes delaying vaccines until a child is 2 and then only giving a few specific ones.

 

I completely agree that our kids immune systems are already compromised and vaccinations at this point don't make sense. I encourage moms to wait to vaccinate even if their kiddo has only a cold.

 

I think our Ped hasn't given me a hard time about not yet vaccinating my two-year old based on the fact that I've told her we will do some specific vaccines when our daughter is three. www.ageofautism.com has some good articles about vaccines and autism research as does www.autism.com.

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Our PANDAS story started when my oldest (now almost 13) turned 5. She was fully vaccinated except I did not let her get the 5 year MMR booster b/c at that time I had been researching vaccines to decide if I would vaccinate my 2nd child that I was pregnant with at the time. When she got her 1 year MMR and varicella vaccine she got a high fever and rash. This made me concerned about further vaccines, but I gave her the 4 yr. DTaP (I had not started researching vaccines yet). I truly believe the vaccines played a big role in her PANDAS and I will not vaccinate her anymore (I signed a religious exemption so she would not have to get her varicella or DTaP booster prior to 6th grade).

 

I did not vaccinate my other 3 children (except for polio). My 6 and 8 year olds have PANDAS, but it is nowhere nearly as bad as my oldest. I attribute this to the fact that their immune systems were not assaulted by vaccines. I also have been more vigilent in suspecting strep and treating it aggressively in my other three.

 

The jury is still out as to whether my 2 1/2 yr. old son has PANDAS, but he has already tested positive for strep a few times with NO physical symptoms at all (just like my older three) and I had him cultured b/c his behavior was horrible (screaming all the time, waking up a lot at night, and being super clingy). This, IMO, points me towards the conclusion that he has PANDAS also. This is NOT to say that all siblings in a family will have PANDAS, but I think if one sibling has it, you need to be super vigilent about keeping your eyes open for the possibility.

 

With all of this said, I am not advocating that people not vaccinate, but in my opinion it will make PANDAS worse. I was so afraid about the time when my kids would get pertussis and chicken pox b/c physicians/media/CDC made me so afraid of the complications with these two diseases, but last year my kids had pertussis and did fine. This year they had chicken pox and also did fine. Someone posted which vaccines do people think are the worst. I personally think the varicella(chicken pox), the MMR, and most definitely Hep B are the most dangerous. Gardasil is right up there with them also.

 

Colleen

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Thank you for the vaccine info. I found a lot of interesting vaccine advice on generation rescue (recommended by someone on the forum).

 

The dr on that sight recommended: no vaccines with thinerasol (that would be the flu vaccine). I will definately discontinue that at this point.

 

He also recommended to vaccinate no more than once every 6 mos, one at a time. That sounds reasonable to me.

 

There were other vaccines he doesn't like, my kids have had them (MMR, Varicella, live virus polio).

 

The only vaccine in the near future, for both of my kids is the 2nd Hep A. I will definately delay untill I feel pandas dd is back to baseline- I guess. I know my pediatrician will be of NO guidance, and tell me it is safe. There was also something on the site that mentioned do not vaccinate when child is on antibiotics. Well that could be always- right?

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