Lets talk triggers

[melanie]

Danny definitly is triggered by specific words (dont laugh) diaper,butt ,pee,baby

 

Weird but I dont know why ?

Anyone else have this?

 

Melanie

[peglem]

"no" is a trigger for Allie and I think a very common trigger. Her triggers are mostly not words, but things she gets stuck on.

[melanie]

Hi Peg

 

NO is a trigger too but not like the baby words.Hows Allie doing?Havent heard much from you hope thats a good thing

 

Melanie

[peglem]

Hi Peg

 

NO is a trigger too but not like the baby words.Hows Allie doing?Havent heard much from you hope thats a good thing

 

Melanie

She's recently had some symptoms that don't seem to be PANDAS related- some have resolved since taking her off bethanechol (the hot flashes/episodes of profuse sweating). We think maybe some of what is occurring is that medications that were addressing PANDAS symptoms are causing side effects now that immune issues are being addressed. But, also, I think she's having sinus issues causing headaches and photophobia. One of the problems with monthly IVIG is that it makes it difficult to test immune issues and infection issues, since infections are all about checking IgG. Still, we are trending in a positive direction, so we'll deal with the little stuff as it occurs.

[melanie]

Peg ask Dr about celebrex for the headache/light sensitivity I think it helped danny

[Priscilla]

YES!!!! This is my dd 8 main (and possibly only) remaining issue. Her triggers are "back", "chin" , "jaw", and "yawn". Try going a day without saying the word "back"- IMPOSSIBLE!! This one really sets her off, total rage, attacks me (no matter who says it). Any of these words can send her into a full blown rage, screaming meltdown for upwards of 10-15 minutes. We noticed some serious slipping after a cold in November (we were off abx) had to restart about 3 weeks ago. Her main issue has been these words, she seems to have to do a compulsion when she hears them. I am not sure exactly what it is she has to do, but she will run into the bathroom screaming and press on her mouth, all the while crying in torment (I think she actually hurts herself). Really tough, and very hard to explain when others ask what is wrong with her. Thankfully, we have noticed her response starting to mellow over the last few days. She had some ERP therapy when we took her to a trapeze class the day after Christmas- they must have said "back" 500 times in one hour (back flip, arch your back, any back injuries?, swing back and forth.......) I am so suprised she made it thru that one. Over the last 2 days she seems to just grumble when she hears it, if she hears it too many times in a row it can still set her off. This is very bizarre to me, nice to know someone else understands..

[Priscilla]

you know I have to add that most of my dd issues, tics, compulsions have centered around her head and spine arching her back, pressing on her mouth, we couldn't touch her head or say head before, all the mouth issues- and the words seem to correlate with her sensitivities. Does your child have other sensitivities, issues in the genital, bottom area that may correlate with sensitvity to these words?? Just curious, I have always thought there is some link with dd.

[melanie]

I dont know Hes 16 so we dont talk about diapers or touch his butt .He freaks when he sees babys too..I think its weird for these words to czuse such anguish

[Priscilla]

I dont know Hes 16 so we dont talk about diapers or touch his butt .He freaks when he sees babys too..I think its weird for these words to czuse such anguish

 

I know what you mean, it is so bizarre. It is like someone hypnotized my dd and said when you hear these words you will freak out. It is so hard to explain to people, they look at me like I am crazy, and I feel crazy when I am saying it.