Vaccines and PANDAS

[earnestfamily7]

OK... it think my own anxiety has gotten the best of me... I thought about my 'lying' post and it has been bothering me since I really do not advocate lying especially to Drs. - I do think it is important to give them a clear picture of what is happening with your child so you can get the best treatment... but if you do not want the vaccination b/c of medical reasons you should be able to get out of it...

My own OCD thought processing made me feel it was necessary to clarify were I stand on the lying issue....

[momto2pandas]

I have had a bunch of vaccinations as an adult since being dx with "PANDAS." (I worked in the third world for several years and worked in hospitals for several years as well, so a lot of vaccinations have been required - and I've needed them as part of dealing with immunity issues.) My experience has been VERY BAD initial effects. For example, I thought I was going to die of depression, let alone of pain in my arm, etc., after the Pneumovax vaccine. The psych symptoms came on, if I remember correctly, after about 2-3 days and were very intense for about 3 days. I also remember having a very hard time after some of the "third world" ones (yellow fever? can't remember all of the others.) Bad enough that I still remember how I felt many years later, but the effect was temporary in each case (few days-weeks), and after a while I was back to normal.

 

I don't recall ever having had a problem with the tetanus vaccine. I never get the flu vaccine - have choosen to take my chances on that one.

 

The "presenting episode" of PANDAS for my ds6 came a couple of months after his kindergarten vaccines (he was behind, so needed a lot of them). However, he also had strep between the vaccinations and the episode, so who knows.

[GatsMom]

I have had a bunch of vaccinations as an adult since being dx with "PANDAS." (I worked in the third world for several years and worked in hospitals for several years as well, so a lot of vaccinations have been required - and I've needed them as part of dealing with immunity issues.) My experience has been VERY BAD initial effects. For example, I thought I was going to die of depression, let alone of pain in my arm, etc., after the Pneumovax vaccine. The psych symptoms came on, if I remember correctly, after about 2-3 days and were very intense for about 3 days. I also remember having a very hard time after some of the "third world" ones (yellow fever? can't remember all of the others.) Bad enough that I still remember how I felt many years later, but the effect was temporary in each case (few days-weeks), and after a while I was back to normal.

 

I don't recall ever having had a problem with the tetanus vaccine. I never get the flu vaccine - have choosen to take my chances on that one.

 

The "presenting episode" of PANDAS for my ds6 came a couple of months after his kindergarten vaccines (he was behind, so needed a lot of them). However, he also had strep between the vaccinations and the episode, so who knows.

 

I have a cousin who had a boatload of vaccinations to travel to South America for an educational fellowship several years ago. She has never been the same since. Immediately after the immunizations she had horrible flu symptoms for a week. Through the years since that time she has symptoms that mirror my sons to a frightening degree. She's never been able to talk a doc into pulling titers and her symtpoms occasionally remiss like my sons but she knows the immunizations to head to S. America were the start of it. She had enjoyed fabulous health up until that point.

[Tracey111]

My son started with eye blink tics two weeks after the Chix pox vaccine.......we spent a year and a half after the vaccine trying to rid the tics......I thought it was TS....now after 11 months of no tics, they are coming back......so I am just starting to research PANDAS...,

 

I KNOW IT WAS THE VACCINE!!! Why else would they show up out of NO WHERE at age 6???

[P_Mom]

Mom to PANDAS.....

 

When were you diagnosed with PANDAS? What was the diagnosis based on?? What were your treatments and symptoms??

[momto2pandas]

Mom to PANDAS.....

 

When were you diagnosed with PANDAS? What was the diagnosis based on?? What were your treatments and symptoms??

 

 

I was diagnosed with PANDAS in the early 90's-mid before it had a name. I had had episodic childhood psych issues (anxiety, depression - nothing "major" enough to stop school or anything), and then anorexia nervosa/OCD/tics/depression as an adolescent, which went away completely during a heavy-duty course of antibiotic treatment for tuberculosis, which I had apparently been carrying around without realizing it. After that things "calmed down" into episodic, brief bipolar-type episodes by my late teens/early 20's. Once it "calmed down" to that level, a pattern became clear whereby the episodes were always linked to a recurrent sore throat infection. I always fell very rapidly into anxiety and depression over the course of hours, and then within 12-24 hours I became physically "sick." Long story from there on -- at first I noticed the pattern myself (around 1990) and realized that I felt better when I stayed on antibiotics and got worse (manic) on antidepressants, and so I found ways to stay on antibiotics prophylactically and stopped taking psych meds. I told my psychiatrist about it because I thought it was interesting and important, and he REALLY chewed me out and told me to stop taking the antibiotics. Bipolar patients have a reputation for making up excuses to go off of medication because they like their highs, and I believe he suspected me of this. So what ended up happening is that I kept on taking antibiotics (variety of sources), and shut my mouth about telling psych doctors (or anyone, for that matter) about it for the next couple of years. During that time, I became educated enough about medicine that I figured out that my pattern actually made sense, so I focussed on finding a doctor who would take the time to figure me out. Eventually I did find doctors who were willing to map out my symptoms (psych and medical) over time, take titers to follow infections and autoantibodies, etc. - which solidified things and eventually led to a diagnosis of "infection-triggered autoimmune neuropsychiatric disorder" - basically a "one-off" diagnosis. After that it was a mix of low-dose prophylactic antibiotic treatment (sometimes - though I went through periods without it) and Depakote in my medicine cabinet to use "just in case" I got an infection and "needed help" (only used a few pills per year.) Eventually I wound up with a doc who had worked on the team at Harvard who studied omega-3 fatty acid treatment for bipolar, and given the inflammatory connection in my case, she recommended a regime of high dose, high EPA:DHA ratio fish oil. At that point I was able to stop taking prophylactic antibiotics and to stop keeping the Depakote around. Things were peaceful for a long time (8+ years?) until last fall, when I had a random, "real" PANDAS episode in response to a really nasty sinus infection. (I have to admit that I had stopped taking the oils for several months before that, too - felt like I didn't need them any more since I hadn't had any issues for so long). The whole 9 yards - tics, OCD-ish sx, aversion to eating, etc. It took 2 Z-pacs, 2 months of Augmentin, and 2 rounds of steroids to get that infection and associated inflammation under control, though the PANDAS sx mostly stopped after the first 3 days of the Medrol pack. Took about a week before I could eat normally, though.

 

I first heard the term PANDAS when my oldest son was diagnosed with it by his pediatrician at age 4.5, back in 2008. I had been unaware until then that "this thing" of mine had actually been officially recognized and given a name.

 

There is obviously a lot more to the story than that, but that's it in a nutshell.