H1N1 & increase/onset of PANDAS symptoms in fall '09

[worriedmommy]

Just wondering how many PANDAS kids contracted H1N1 in the fall of 2009, and had an onset or exacerbation follow?

 

Since learning of PANDAS, and looking at dd's history of peri-anal strep, I truly believe that dd's first onset of PANDAS was in 2005, when she was 18 months old. She had a DRAMATIC personality change, that far exceeded any sort of "terrible-two" behavior. Symptoms at that time were mostly rage, extreme defiance & OCD, but I didn't recognize them for what they were. Anyway, in 2008 dd had her tonsils removed and within a month was a new child. Happy, cuddly, sweet...I was thrilled. It's wasn't until 2009 that things went drastically "wrong". In July 2009 she was dx with peri-anal strep, which was treated and went away. In Sept. peri-anal strep returned & she had strep throat at the same time. She was treated and it went away. Within weeks she came down with "presumed" H1N1 (they didn't test, but she had all the symptoms). After a week she fully recovered. 8 days later she had a 103-104 fever, with no other symptoms, that lasted 5 days. Within days of that ending, she began a tic-cough that she literally did over 10000 times a day (went away with sleep). It was this tic cough, that led me to PANDAS. We had 2 courses of abx that improved the tic cough...the 2nd course, in Jan 2010, made it go away completely. Then in Feb 2010, while there were 11 cases of strep throat in her kindergarten, the motor tics started...and we've been in tic ###### ever since. Just got her CaM K score back at 150, so I do feel it's PANDAS.

 

Anyway, I'm noticing that in many posts people talk about their child having H1N1 last fall. Just curious how many? Of all of the kids in my dd's daycare, all of my friends kids and my family, only 1 of my nephews got H1N1. Yet, it seems that a disproportionate amount of PANDAS kids got it. Not sure if that's b/c many of these kids, including mine, are immune deficient, or if something in H1N1 triggered PANDAS to emerge or resurface.

[thereishope]

All 3 of my kids had H1N1. My PANDAS son was already recovered from his last strep triggered exacerbation at the time. About 5 days post 104+ fever, he had some PANDAS symptom appear, but thankfully nothing bad or long term.

[kimballot]

Yes.. we are an H1N1 exacerbation story.

 

My PANDAS son and non-PANDAS daughter both had presumed H1N1 last fall, as did half or more of their respective schools. I do not think the PANDAS kids got it any more than non-PANDAS, I just think that we talk about it more because it was not one week of high fever for us .... For my son it turned into months of school problems, separation anxiety and eventually a sinus infection (I do believe the inflammation that was started with H1N1 set him up for the most recent infection that we are dealing with).

 

Symptoms did not get better until prednisone, although that has its own set of issues (tonight he has restless legs).

 

It is funny because I was just reading the posts on pepsi refresh project PANDAS about not vaccinating. I am glad we did not vaccinate against H1N1.. but on the other hand... getting the actual virus has certainly sent him into a tailspin. I wonder if the vaccine would have been better or worse?

[bgbarnes]

All 3 of my kids had H1N1. My PANDAS son was already recovered from his last strep triggered exacerbation at the time. About 5 days post 104+ fever, he had some PANDAS symptom appear, but thankfully nothing bad or long term.

We went from Strep right into Swine...then had a lovely bout with h pylori in the Fall- did a T&A due to obstructive sleep apnea at Thanksgiving ( did fix a lot of his sleep issues but not all- now I realize are PANDAS issues) we did not know about PANDAS yet- but oh boy- knowing what I know now- it was there.

Brandy

[kimballot]

Brandy - you really should not have so much fun in the Fall!

[worriedmommy]

I am glad we did not vaccinate against H1N1.. but on the other hand... getting the actual virus has certainly sent him into a tailspin. I wonder if the vaccine would have been better or worse?

 

What kills me is b/c they didn't actually swab dd, the pediatrician suggested we still give her the H1N1 vaccine...and we did!!! Granted, her tic cough had already started, but still... I've always been pro-vaccines. And now, since PANDAS, I'm paranoid of everything. I'm even starting to question whether my other child may have PANDAS. Dh is sure he does, and day by day I'm seeing more and more things that make me think he does. I actually declined his 4 year vaccinations at his well child visit last week. It kills me to think that I may have 2 with PANDAS!!

[kimballot]

I am wondering what people have seen after a vaccination. My son has had PANDAS since he was an infant and it is clearly related to his sinusitis - which he has had since I brought him home from the hospital. If he had an exacerbation after a vaccine, it was hidden amongst all the other sinus-related exacerbations.

 

I've never been keen on the flu shot or other annual vaccines, but I am wondering what it would be like to NOT have my kids vaccinated for the major illnesses. I've worked with kids with meningitis who've lost limbs and I've worked with kids with polio who can no longer walk. It is not pleasant. I have friends who survived the polio epidemics and they talk about not being able to be out in public or around other children during the summer - no swimming in pools (read Jan Nichol's book "Twin Voices") Now that I know my son is immunodeficient, he may not be vaccinated anymore - I'll have to see what the immunologist says. That makes me scared too.

 

I wish we had more research to understand this better.

[thereishope]

With my son's first exacerbation in 2008, before we knew it was PANDAS, we took him to the dr and the rapid came back negative. So, the ped said to give him FluMist. We did. Two days later we found out the culture was +. He had strep. I wonder how recovery would have been different if we didn't get that.

 

 

What kills me is b/c they didn't actually swab dd, the pediatrician suggested we still give her the H1N1 vaccine...and we did!!!

Edited April 28, 2010 by Vickie

[bgbarnes]

Brandy - you really should not have so much fun in the Fall!

kimballot- LOL! what's worse is there is more!! my dd5 had a tonsillectomy in September b/c they were touching- and h1N1. I was planning on doing hers at thanksgiving too but it became dangerous..so we moved it up...there was the endoscopy my ds had to find out he had h pylori 3 weeks before the T&A.....yes we had a HORRIBLE exacerbation in Spring that brought us to the PANDAS diagnosis but Fall really was a nightmare!

back to H1N1- I was not planning n vaccinating b/c I wanted them to get the antibodies the natural way- before I knew my son had immune issues- but both my kids got H1N1 early enough that the doc looked at me and said don't need to talk to you about the vaccine now. FYI- my Doc did not vaccinate her kids with it- too new.

 

Brandy

[kimballot]

Yes - I can see how that could nag at you. I have real worries about vaccinating when my kids are sick, and you had that false reassurance of a false negative rapid strep. I guess the bottom line is that H1N1 was a bear for our kids (no pun intended) no matter how you look at it.

 

I wish we had a better way to know which kids will react to vaccines in a negative way so that we can be sure they don't get vaccines but kids who have immune systems that can handle it do get vaccinated (I am thinking of the one-time vaccinations more than the annual flu vaccine).

[dcmom]

Both of my girls exacerbated after supposed H1N1 this year. I was NOT planning on the vaccine, but the flu went through their school abefore it was available anyway.

[colleenrn]

My 9 year old son had the H1N1 flu in October and 2 1/2 weeks later he had the seasonal flu. With both flus, my other children got it too, but not as severe as my son. Both times my son started showing symptoms of the flu, I immediately started dosing my other 3 kids with oscillococcinum and that is why I beleive they got a much milder case.

I did see any flareup in their PANDAS symptoms. My kids, so far and fingers crossed, don't react that much to viruses. They have had pertussis and chicken pox in the past few years with no noticeable PANDAS flareup. They are also on zithromax daily, which modulates the immune system, so maybe that is why they don't react as much to viruses- not sure.

 

Colleen

[kimballot]

Colleen - thanks for the info on oscillococcinum. I was not aware of this - but it looks like something I should keep on hand. Thanks!

 

My 9 year old son had the H1N1 flu in October and 2 1/2 weeks later he had the seasonal flu. With both flus, my other children got it too, but not as severe as my son. Both times my son started showing symptoms of the flu, I immediately started dosing my other 3 kids with oscillococcinum and that is why I beleive they got a much milder case.

I did see any flareup in their PANDAS symptoms. My kids, so far and fingers crossed, don't react that much to viruses. They have had pertussis and chicken pox in the past few years with no noticeable PANDAS flareup. They are also on zithromax daily, which modulates the immune system, so maybe that is why they don't react as much to viruses- not sure.

 

Colleen