rowansmom

we always know shes sick before she seems sick because of how she acts. after treatment it passes pretty quickly. this time its slower than usual- i would assume it depends on how her brain is reacting to being ill. but they definately come and go.

is that right? i wondered... she has a sleep disorder- doesnt fall asleep for hours, wakes up often. it affects her attention in the daytime.

as well- rowans big thing when shes having an episode is that sounds/voices/movement for her is very loud/fast and scary. even familiar people sometimes scare her. the neurologist said this is more related to the type of epilepsy she has.

i had them as a child/teenager too- it passed as i got older. rolandic epilepsy is hereditary btw. it makes me wonder if PANDAS is too...

thank you hope, so much.

thanks! i love looking things up, if given the right direction. my poor doc, he just stands there and looks at me like a deer in the headlights when i ask him anything about this. thank GOD for the internet!!!

So I am going to, on all your wonderful advice, take Rowan back to our family doc and have her blood tested. As I've said, he's great but has never heard of PANDAS. Does anyone have any (medically credible) articles I can bring for him?

Hi! Having only joined today nobody knows much about me yet i live in canada and love it here- thank god for universal health care! i have been an RN for about 15 yrs, but i have always worked in gerontology so these kid medical issues are a bit of a mystery to me. i have 3 girls, 3 cats, and a hubby that makes me sigh when i look at him (in a good way!) my youngest girl is 8, now the hubby says he wants another baby. i think hes hoping for a boy although he swears thats not why. oh- and i love beer and clamato- an aquired taste i would like to introduce to the south

I agree, thats what i felt was right, thanks for the moral support

oh my- it is scary when its happening, isn't it... yes she does know its not real, and it does pass when she feels better. As i said, Rowan has been Dx with rolandic epilepsy as well- it is a nightime epilepsy with different symptoms than the norm. Many kids have it, but few ever know they have it because they don't often show symptoms while they're awake, and only have 1 or 2 seizures in all, if any. that and its "grown out of". It started the same time the PANDAS did, or at least thats when we noticed the nightime problems starting... i've always felt the hallucinations may have something to do with that, or just the two disorders combined set her brain off when shes sick. Have you ever seen your boy "sleepwalk"?

Thank you everyone, so much, for replying- I'm getting the beginning of a feeling of having control over this... I wish I had found this forum a couple of years ago!

Did anyone have an opinion on whether she should stay on the antibiotics even though the swab was negative? As a nurse my best practice says no, but I would like to know other's opinion on this.

Thank you c.p. I do really hope she will outgrow it. What did you do to help her?

that is so interesting- thank you so much for replying... what kind of hallucinations, if I may ask? We've dealt with voices telling her there's something coming to hurt her, a bomb under her bed, girls in long dresses, flying "e's" in the air, on and on... but only when she's sick. I swear to god before the Dx of epilepsy and PANDAS i thought she was shchizophrenic. Last night (about 5am) she woke up scared, was saying that everything was moving fast, we had to whisper and she wouldnt let me touch her. This is the most common thing she does, it happens during the day too but never when shes active & running around. As well with this she often says her fingers have shrunk, or are missing entirely (that always disturbs me- the look on her face as shes checking her fingers). I always assumed this was due in part to her epilepsy. I really just don't know what to think.

thanks for the welcome Calicat

Hi... My name is Tracy, obviously I'm new here, and I am very happy to finally find a place to turn to. My daughter Rowan is 10 and has had PANDAS for 3 years. It is fairly mild, and we only see an increase in symptoms when she has strep (always with a positive swab). After starting on antibiotics they go away fairly quickly. This time however she obviously had a viral chest cold, and we swabbed anyways- as expected it came back negative. But there she was with the usual problems- obsessive thoughts, "panic" attacks. I'm confused, and worried. Is it possible things are changing, perhaps there is some damage being done with all the strep infections she's had? I had started her on antibiotics but stopped them after the swab came back negative, should she stay on them? I can't ask these questions of my family doc- he has never even heard of this, and seems pretty doubtful of the whole thing- although to his credit he does what I ask An aside note- she also has Rolandic epilepsy (a childhood, mostly nocturnal type of epilepsy). It has been at times confusing to distinguish between the two. Has any other PANDAS parents ever seen their children have episodes of having visual or auditory hallucinations when they are sick? Thank you so much for your time- I am so thrilled there are others out there to talk to- this has been a lonely and frustrating road for me and my girl.