Vaccines and PANDAS

[Ellen]

I have posted in other places about my son's PANDAS exacerbation from vaccines, but I want to post on this thread because I feel our story is one that should be heard by any PANDAS parent considering vaccines for their child. My son's PANDAS began in January of 2007 at the age of 10 and 1/2 with OCD. (He did have a history of tics associated with strep prior to that since the age of five but they were mild and temporary.) In late August of 2007 my son had two vaccines (Chicken Pox and Hep A) in one appointment during a time of year when his allergies were acting up. The doc assured me that this was fine. In September of 2007 my son started middle school and was unable to sleep or do homework (before that he had always been a high achieving A student). Within a few weeks of the vaccines, he was pacing constantly, having major tics, facial grimacing and chorea and his OCD became severe. The only symptoms we had seen before the vaccines were OCD and tics. In addition he was having major focusing problems, could not sit still, and would have long zoning out episodes where he would be unresponsive and staring into space for up to five minutes at a time. Eventually he began to have rage episodes and impulsive behavior and things became so extreme that he had to be hospitalized a number of times. This was over two years ago and even though there have been many good improvements due to a variety of treatments, he is still not the same kid he was before the vaccines. Every day I worry that some of this damage will end up being permanent. He does not zone out for long periods of time any more, but he can still be very spacey and I am hoping that by the time he is old enough to drive in a few years, this symptom will be gone. Otherwise he will not be able to drive. So to answer the question about how long did the setback last, I would have to say that it was not just a setback but a severe worsening of symptoms that was devastating and caused what I fear is a permanent change in him. And in our case, I don't believe there were any other contributing factors. I strongly believe that the vaccines did major damage to my son (some but not all of the symptoms are better) and that even though some others are not as sure about the connection in time, in our case the changes started to take place two days after the vaccines.

I realize that there are many factors to consider when deciding whether or not to vaccinate a PANDAS child and each case is different. But I only wish I'd read or heard something about the risks at the time so I could have made an informed choice, a NO THANK YOU. I hope that once PANDAS becomes more known to the world, the risks of vaccinating PANDAS children will become known so that other parents can make an informed decision. I did not have that information at the time and I can't change what happened. But for us, the question of vaccines has now become a no brainer. We are done with them for my son forever.

 

I'm curious how PANDAS kids are reacting to vaccines. If your child has received any vaccinations since their PANDAS surfaced, can you let me know your experience with them? Did they have a setback due to the vaccine? Did they do fine?

 

Can you please tell which vaccine the child received?

 

How long after their last PANDAS exacerbation did they receive the vaccine?

 

If they had a setback, how severe or mild was it and how long did it last?

 

If they had a setback, could there have been any other contributing factors?

 

 

Thanks!