PANDAS Network Update

[thereishope]

My son just turned 6 when he had H1N1. It was 7 months past his last strep triggered exacerbation. His PANDAS didn't vamp up as bad as it had months earlier with colds and allergies, but 4 days after his 105 fever (w/ fever reducer in him), I did see some PANDAS surface. It wasn't real bad but both my husband and I agreed it was PANDAS, no doubt. Luckily, it was very short lived.

 

Maybe I should add that the H1N1 symptoms, like the bad cough, didn't hit my 6 year old as bad as my 8 year old.

[Kayanne]

Yes, and some viruses are bigger triggers than others. I'm curious...is there anyone who's PANDAS kid has had H1N1 and NOT reacted?

 

My PANDAS daughter had the flu in Oct, but it was not confirmed to be H1N1. My husband was sick too, and he did the rapid nasal swab...it was negative for the flu. However, the GP told him that the test has a high rate of false negatives, and it was still probably the flu.

 

My daughter's doctor prescribed Tamilflu...it did cut the severity of the illness down. I saw one PANDAS-like tantrum because she was frustrated about her drawing not turning out right...but she pulled herself out of it within about 10-15 minutes, so I really cannot say she had an uptick in PANDAS.

 

We also did (after much very stressful consideration) decide to have my kids receive the H1N1 vaccine (one dose)...also we had no side effects.

 

Also, Diana, THANK YOU for all that you do!!

 

~Karen

[momto2pandas]

Yes, we suspected PANDAS when ds3 was 2, but it wasn't until he was 3.5 that it was clear enough to be diagnosed - so he had not yet actually been diagnosed when he had H1N1. At 3.5 he still responds to a much more limited set of stuff (only to clear bacterial infections that make him "actually" sick) than does my ds6. When he does respond, though, ds3 has much more clear OCD-like symptomatology, whereas ds6 is more likely just to be in a pissy mood.

 

 

Mine ds 6 reacted, my ds3 did not...but then, he was only 2 at the time so I might not have picked it up.

 

Yes, and some viruses are bigger triggers than others. I'm curious...is there anyone who's PANDAS kid has had H1N1 and NOT reacted?

 

Yup, it seems like H1N1 made our older kid sicker (and she was sick longer) than our younger...so that may be part of the issue. Also, if your 2 year-old is PANDAS, it may be early enough in his illness where he's not reacting to non-strep illnesses...YET. Or...since 2 year olds are tricky to read (they can normally be a bit erratic) it might be difficult to deterimine what is PANDAS and what is the "terrible twos".

[LNN]

Yes, and some viruses are bigger triggers than others. I'm curious...is there anyone who's PANDAS kid has had H1N1 and NOT reacted?

Ok, it's bad enough to not be a "typical" family in our own neighborhood, but now we're not even typical in this thread either.

My PANDAS son did not react to H1N1. He did react adversely to Tamiflu.

My younger daughter's physical symptoms were milder, but she's the one who ended up in the ER with a febrile seizure that week (she was almost 5 and had never had any seizure issues previously or since).

Guess our family just marches to a different drummer no matter what parade we're in.

[colleenrn]

LLM,

My 8 yo old son had H1N1 this past Fall and exactly 2 weeks later had seasonal flu. Neither time did he had any exacerbation of PANDAS symptoms. He was physically very, very ill, but no change that I saw with PANDAS. In fact, all my children, 2 years ago had pertussis and none of them had an increase in PANDAS symptoms. One year ago, my 3 youngest children had chicken pox, and again, no increase in PANDAS symptoms. They have had an increase in PANDAS symptoms with strep that is NOT strep A and with ear infections.

 

Colleen

[Diana]

Hi EAMom - well, I just report what she said! But, I think I have heard mostly that it is true - mild improvement is seen within one week. But, well, there is always a situation where it may not happen. It is a difficult thing.

[Diana]

Hi there! We talked about your case --- it made the docs really hopeful that when all else fails -- they agreed -- the high dose abx must be tried. so THANK YOU TOO!

[Diana]

Vickie - all autoimmune illnesses make a person weak when they have an exacerbation. Swedo's NOT understanding how significant viruses can irritate these kids who usually got sick BEGINNING with strep -- is sort ridiculous. I have mild m.s. - and when I've had an exacerbation (NOT when I'm doing really well) -- a cold, a cough really lays me out heavily for a few days. It is just like PANDAS. For me it is incredible fatigue. For the pandas kids --- a myriad of mood issues.

 

I have seen with my son now that he fully recovered (seems to be) -- he is strong and doesn't react. But, you know, time will tell. By the way, my first big M.S. exacerbation -- it took me one full year to get back to normal. And I have been nearly 100% fine for 10 years. UNTIL, PANDAS exhausted the heck out of me. Now I'm nearly at the end of the one year recovery and like my son....seem to be fine.

[thereishope]

I am hoping if my son stays healthy things will remain calm. Even with his sinus infection that lasted almost 2 months, I didn't see PANDAS symptoms surface. That pleasantly surprised me. That was about 10 months after his last strep triggered exacerbation. One or two questionable things popped up but the kind of behavior when you can't determine if it's his age (6) or the disorder.

 

 

I have seen with my son now that he fully recovered (seems to be) -- he is strong and doesn't react.