Early Onset

[Suzan]

Early onset (prior to the age of 2) - If you feel comfortable, will you let me know when your child's first strep infection was and whether you believe PANDAS started at that time? What were the symptoms that make you think this could have been the first episode?

 

I will be seeing Dr. T next month. I would like to bring some of this information to him since I believe our case started so young (first strep at approx 12 months and 16 months with subsequent strange behavior). I know there are some others out there like us.

 

Thanks!

 

Susan

[FallingApart]

We still to this day have not been diagnosed with strep. Does that mean DD is a carrier or she has something else that brought on and is causing PANDAS? I don't know.

 

What I do know was that from 0 - 9 months DD was a very easy baby. She had a few issues but had no real sicknesses and no sensory issues, sould go to strangers, etc. All the things you are concerned about with a newborn were not an issue for us. Then, in the middle of the summer at 9 1/2 months she just started crying and pretty much didn't stop for at least a week. We thought it might be teething, displeasure at not yet being mobile, who knows. But it was out of the blue and out of character for her. Since we had no idea that we were looking for something to be wrong we went back to expecting her to be our perfect and easy baby. But from then on her personality was different. She was different at playdates, she stood out from the other kids in different non-autistic ways. I now know it was PANDAS. Her behaviors were to just git really irate about things that shouldn't matter. No ability to share or take turns. Even at an agae appropriate level. Never developed manners like other people's children or our next child did. Just very rigid and inflexible. It came on suddenly and never went away. And now we are where we are today...

[smartyjones]

Susan

my son's first pandas episode was oct/nov 2008 - age 4 years, 5 months. he had a documented strep infection at 22 months. he was only tested at that time for strep b/c his brother had a positive rapid the day before. the next day, he vomited and was positive on the rapid. had we not had the test for my older son, we wouldn't have even thought strep. my older son didn't have typical symptoms - just a whitehead acne like breakout on his face for 2 mornings that dissipated but didn't totally go away as the day went on. was it a strange strain of strep? does this show they have strange reactions to strep? both boys were on abx and had no other symptoms.

 

since he was only 2 and 3, most of his behavior was age-appropriate - although i would say he was 'more tantrum prone' than your average kid - not anything we couldn't handle or really out of the realm of a 2 year old. occasionally, he'd have a strange issue - not more than once every 6 months or year. one was when my dad was watching him and he refused to get into his car to go to lunch without me. another was when he freaked out b/c he wasn't cooperating to get ready to leave my moms and i picked him up and brought him to the car - he was freaking out that he didn't put his shoes on in the house - something that was extreme during pandas episode. he'd have quick reactions to things and he's always had a stronger than age attention span and what we called a 'puzzle mind' - i used to joke that he was my 'bipolar genius'. we thought all this was just aspects of his personality - (and still could be). he seemed to have 'sensory overload' at large events like the circus or sports events - didn't need to leave but would just sit back and take it all in.

 

about 1 year, 3 mths after that strep, we tried to potty train, right around 3rd birthday. this developed into extreme potty phobia that wasn't overcome for 2 years. for about 2 weeks after 'potty training in 1/2 day', he was holding pee for 10-12 hours and then one morning threw up. i took him to ped, she thought his throat looked like strep, but was neg on rapid and culture. no other symptoms or strange behaviors except could not get over this potty phobia.

 

about 3 months later was start of preschool. he took a long time to warm up, maybe 1-2 months - spent much time near the fish tank watching. wasn't unhappy but didn't so much participate - preferred to watch others. then got over and was fine in the class.

 

2 years after that strep - possibly new infection, old one still around - ? , approx age 3, 10 mths - had some sinus congestion and eye pain. dr didn't find anything. when had sinus CT almost a year later, at age 4, 8 mths - all 6 sinus cavities infected, ASO titers of 898. ped said could very well have been start of infection almost a year earlier and had been hanging around.

 

i can't remember when it started but he would occasionally throw up at the drop of a hat and/or run a fever w/o other symptoms that would go away rapidly - but generally was healthy . i had thought it was just how his body handled whatever he was exposed to. he would get more tired that your average kid - 2 naps until age 3 - not lethargic or at the time seemed troublesome, just liked to sleep more than an average kid. now i think it's all related - did he ever really kick that initial strep? was it festering for 2+ years? was it latent strep that reared every now and then?

 

i kind of got on a ramble there - it's so hard b/c so much can be explained as just a little out of normal realm for a 2-3 year old. i'd try to think if there was anything that you now know is pandas that showed up before you did know - (like when i said he needed to put his shoes on in the house - that had been an isolated incident until it was extreme with pandas episode)

 

please let me know what dr T says about this concept.

[smartyjones]

No ability to share or take turns. Even at an agae appropriate level. Never developed manners like other people's children or our next child did.

 

this is very interesting . . . things i notice in my son during exacerbation that are different than his normal demeanor. he usually uses nice manners and if he doesn't, does when i remind him. during exacerbation, he very much resists simple manners.

 

i believe my nephew has undiagnosed pandas. a few years ago, when he was at my house, i wouldn't give him something b/c he wasn't using nice manners - he finally decided he wanted it badly enough and asked with manners - then he said under his breath "i hate that word" about please. other times, he would look at me and shout "thirsty". it was so ridiculous. now i think it's pandas related.

[smartyjones]

just remembered this b/c he just did it to me but was totally accidental...

 

when he was young and would be upset - i seem to think like when he'd wake up in the middle of the night - he'd fling his head back into mine. he'd be wanting me to hold him, not trying to get away. it wasn't really wild flinging but a push back. a couple of times, I thought he could have seriously broken my nose.

 

my nephew did this too.

[melanie]

Early onset (prior to the age of 2) - If you feel comfortable, will you let me know when your child's first strep infection was and whether you believe PANDAS started at that time? What were the symptoms that make you think this could have been the first episode?

 

I will be seeing Dr. T next month. I would like to bring some of this information to him since I believe our case started so young (first strep at approx 12 months and 16 months with subsequent strange behavior). I know there are some others out there like us.

 

Thanks!

 

Susan

 

 

Hi Sue

 

I got a history from the pediatrician call and ask foer a copy mine made me pay a dollar a page but (58$$$)that means 58 pages he was always sick .

 

Melanie

[thereishope]

The psychiatrist told me that symptoms of OCD can surface as young a 6 months old but that child more than likely will not be diagnosed until a decade later. She said even simple things like needing to be held a lot and diffiuclty sleeping may be signs of early OCD in a baby. Or I guess I can add....PANDAS. she didn't say that but I am.

[mom md]

My son had awlful night terrors at 16-18 months. Awlful. Looking back it makes you wonder.

[FallingApart]

Holy cow! We had night terrors at 4 months. I know night terrors are things that any child can have. But more similarities...