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Posted

We had an appointment w/ Allie's psychiatrist today (and her med student) and told her about our positive developments (last time we saw her was just before our 1st HD IVIG after our 2nd low dose- not a good time, as we were requesting more valium, PLEASE!), as Allie calmly engaged the med student in helping her find the View Master to go with the reels she'd already found. Yes, my daughter initiated interaction with a stranger! She noted the healed skin on Allie's forearms (from biting herself) and even the scars are fading. The forehead sore that she's had for at least 5 years (from banging her head) is healing as well. We've been keeping the psych apprised of what's happening w/ the PANDAS treatment and she's been kind of patiently watching to see how it goes. She was very happy to hear about the improvements...and mentioned to the med student that PANDAS is controversial, but since we had kept all other treatments the same, it must be the IVIG that is responsible for the changes. :)

I shared some of the experiences our pediatrician has told us, about amazing recoveries of treated children (caught early), and told her he would welcome any patients that she might want checked for PANDAS, stressing that it couldn't hurt to at least try abx for these children first. She said OCD is particularly hard to treat. She did write down the name of my pediatrician...I hope she'll really use it!

 

BTW, valium usage has been greatly reduced!

Posted

We had an appointment w/ Allie's psychiatrist today (and her med student) and told her about our positive developments (last time we saw her was just before our 1st HD IVIG after our 2nd low dose- not a good time, as we were requesting more valium, PLEASE!), as Allie calmly engaged the med student in helping her find the View Master to go with the reels she'd already found. Yes, my daughter initiated interaction with a stranger! She noted the healed skin on Allie's forearms (from biting herself) and even the scars are fading. The forehead sore that she's had for at least 5 years (from banging her head) is healing as well. We've been keeping the psych apprised of what's happening w/ the PANDAS treatment and she's been kind of patiently watching to see how it goes. She was very happy to hear about the improvements...and mentioned to the med student that PANDAS is controversial, but since we had kept all other treatments the same, it must be the IVIG that is responsible for the changes. :)

I shared some of the experiences our pediatrician has told us, about amazing recoveries of treated children (caught early), and told her he would welcome any patients that she might want checked for PANDAS, stressing that it couldn't hurt to at least try abx for these children first. She said OCD is particularly hard to treat. She did write down the name of my pediatrician...I hope she'll really use it!

 

BTW, valium usage has been greatly reduced!

 

Great news!!! I teach children with Autism and I often wonder.......

Hey, was the valium reduced for you or her? and do you share? Just sayin'

Posted
Hey, was the valium reduced for you or her? and do you share? Just sayin'

 

Well, I've been tempted, but have never actually tried it. Still not too late, though! ;)

Posted

We had an appointment w/ Allie's psychiatrist today (and her med student) and told her about our positive developments (last time we saw her was just before our 1st HD IVIG after our 2nd low dose- not a good time, as we were requesting more valium, PLEASE!), as Allie calmly engaged the med student in helping her find the View Master to go with the reels she'd already found. Yes, my daughter initiated interaction with a stranger! She noted the healed skin on Allie's forearms (from biting herself) and even the scars are fading. The forehead sore that she's had for at least 5 years (from banging her head) is healing as well. We've been keeping the psych apprised of what's happening w/ the PANDAS treatment and she's been kind of patiently watching to see how it goes. She was very happy to hear about the improvements...and mentioned to the med student that PANDAS is controversial, but since we had kept all other treatments the same, it must be the IVIG that is responsible for the changes. :)

I shared some of the experiences our pediatrician has told us, about amazing recoveries of treated children (caught early), and told her he would welcome any patients that she might want checked for PANDAS, stressing that it couldn't hurt to at least try abx for these children first. She said OCD is particularly hard to treat. She did write down the name of my pediatrician...I hope she'll really use it!

 

BTW, valium usage has been greatly reduced!

 

Peg, this tango with the psych is priceless! When she mentioned the word controversial I can just hear you saying "This is true, but fortunately more and more physicians are getting their heads out of their arses everyday B)

Posted

We had an appointment w/ Allie's psychiatrist today (and her med student) and told her about our positive developments (last time we saw her was just before our 1st HD IVIG after our 2nd low dose- not a good time, as we were requesting more valium, PLEASE!), as Allie calmly engaged the med student in helping her find the View Master to go with the reels she'd already found. Yes, my daughter initiated interaction with a stranger! She noted the healed skin on Allie's forearms (from biting herself) and even the scars are fading. The forehead sore that she's had for at least 5 years (from banging her head) is healing as well. We've been keeping the psych apprised of what's happening w/ the PANDAS treatment and she's been kind of patiently watching to see how it goes. She was very happy to hear about the improvements...and mentioned to the med student that PANDAS is controversial, but since we had kept all other treatments the same, it must be the IVIG that is responsible for the changes. :)

I shared some of the experiences our pediatrician has told us, about amazing recoveries of treated children (caught early), and told her he would welcome any patients that she might want checked for PANDAS, stressing that it couldn't hurt to at least try abx for these children first. She said OCD is particularly hard to treat. She did write down the name of my pediatrician...I hope she'll really use it!

 

BTW, valium usage has been greatly reduced!

 

Peg, this tango with the psych is priceless! When she mentioned the word controversial I can just hear you saying "This is true, but fortunately more and more physicians are getting their heads out of their arses everyday B)

OMG! Did you have the room bugged or something? :o

Posted

Peg, this tango with the psych is priceless! When she mentioned the word controversial I can just hear you saying "This is true, but fortunately more and more physicians are getting their heads out of their arses everyday B)

 

Awesome, JAG! Can we get cards printed up with this (like the "Got Strep?" campaign, only a tiny bit more blunt)? ;)

 

Singer and Kurlan are gonna get a LOT of mail!

Posted

Thanks for yet another wonderfully encouraging post peglem. You and Allie may be a whole chapter in some medical text someday.

 

And JAG10 thanks for the tagline....

 

So peglem, I wonder how long it took the psych and her student to remove their heads from said orifices after you left...here's hoping their vision is clearer now and thanks for educating the world!

Mary

from Michigan

Posted

Thanks for yet another wonderfully encouraging post peglem. You and Allie may be a whole chapter in some medical text someday.

 

And JAG10 thanks for the tagline....

 

So peglem, I wonder how long it took the psych and her student to remove their heads from said orifices after you left...here's hoping their vision is clearer now and thanks for educating the world!

Mary

from Michigan

 

Well, in defense of this particular psychiatrist- we were sent to her after I had completely soured on the whole profession at the request of our wonderful pediatrician who was feeling alone in all the world trying to help my daughter- before we knew about cunningham tests, PANDAS doctors, mouse models, etc. The last psychiatrist we had showed me the door because she was "not going to risk her career..." (Which made me say something snotty, but only because I knew I would not be getting any help). So, I agreed to go to this psychiatrist that was found by the pediatrician, only because the pediatrician wanted me to. I was very hard on her (and psychiatry in general) and she has stuck it out and really tried to help us, offering her expertise in medications, but really not pushing anything and honest about the the experimental nature of what she was doing (especially with my daughter). She looks things up all the time for us, and one thing she said yesterday is that We(meaning psychiatrists) are really dealing with a group of symptoms and we don't always know the cause." That was not news to me, but a psychiatrist openly admitting that, is, in my experience, quite unusual. I'm no defender of psychiatry, but this one is special!

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