Jump to content
ACN Latitudes Forums

Need a new psychiatrist


Recommended Posts

The two place I have heard of with psychiatrists who understand PANDAS are:

 

1. The child study team at yale - under the direction of Dr. James Leckman

http://childstudycenter.yale.edu/index.aspx

 

2. The Rothman Center in Florida - under the direction of Dr. Tanya Murphy

http://health.usf.edu/medicine/pediatrics/rothman/index.htm

 

I hope you can find someone to help you understand what is happening with your daughter, so you can get the best treatment for her-

Link to comment
Share on other sites

You guys are fabulous. I tried to show the psych. doctor videos, and she said she doesn't need 2 c them to understand what is going on. SHE SURE DOES, because she keeps telling me that the medication we try are not suppose to make children violent!!! She keeps telling me that they are tested on kids and they don't do this. Well...they were NOT tested on my child, I told her. Time for another doctor I think. I'm paying a lot of money (out of pocket) for someone that does not believe me, and it is not only on this subject...

My girl tries so hard to read and learn. When the tutor comes, she gives it a try and you can see her pupils dialate and become very agitated. I know then, it's time to give her a break. The pdoc. emails me and says I need to back the teachers and give my girl lots of encouragement to learn. Ugh!!! She should have been in my shoes for the last 12 years. Anyway...I told her that sounds like information from the book called "Parenting for Dummies 101"

I told her that I didn't even need to read THAT book to know that is the way it USUALLY works for kids. BUT NOT MINE!!!

Link to comment
Share on other sites

You guys are fabulous. I tried to show the psych. doctor videos, and she said she doesn't need 2 c them to understand what is going on. SHE SURE DOES, because she keeps telling me that the medication we try are not suppose to make children violent!!! She keeps telling me that they are tested on kids and they don't do this. Well...they were NOT tested on my child, I told her. Time for another doctor I think. I'm paying a lot of money (out of pocket) for someone that does not believe me, and it is not only on this subject...

My girl tries so hard to read and learn. When the tutor comes, she gives it a try and you can see her pupils dialate and become very agitated. I know then, it's time to give her a break. The pdoc. emails me and says I need to back the teachers and give my girl lots of encouragement to learn. Ugh!!! She should have been in my shoes for the last 12 years. Anyway...I told her that sounds like information from the book called "Parenting for Dummies 101"

I told her that I didn't even need to read THAT book to know that is the way it USUALLY works for kids. BUT NOT MINE!!!

 

 

Wilma - I hope you can find a doctor who understands PANDAS to help you. Let me say, though, that I do not think all of the problems our children have are due to PANDAS (some folks on this board may throw tomatoes at me for this).... I think that our children are very complex. I think that their problems are initially triggered by a physical illness that results in behavioral problems. Unfortunately, the kids live every day in a family system and most of our kids also spend time every day in a school system and in a friend system. All of these systems can make the behavioral problems better or worse - depending on whether the system is reacting well.

 

What I mean is - (and I am speaking as a parent who has lived the PANDAS roller coaster for 14 years)... When my son goes into exacerbation I often get dragged in with him. I start doing things for him because I know he is sick and then I expect less of him because I know he is sick, and then I start expecting everyone else to do things for him because he is sick.... Well - eventually, my son's infection and PANDAS may clear up, but he is still not functioning because he has learned to not function.

 

My son's recent exacerbation seems to be subsiding and he is doing better at home - but not doing better at school. Why? Because I spend every day talking to experts, reading, analyzing, and modifying my approach according to his current abilities. The school has a meeting and everyone decides how to approach my son, and then they do what they decided on (whether it works or not) for several weeks until we can all meet again. Even though his PANDAS symptoms are decreasing, he is not increasing his functioning in school.

 

Unfortunately, there are very few professionals who can help us to sort all of this out. I don't think we have a "Best way" to be the parent of a child with PANDAS.... I am also trying to get to a PANDAS psychiatrist right now. I already have a PANDAS immunologist who has done a great job of getting rid of the infections.... Now I am hoping that a PANDAS psychiatrist and a PANDAS psychologist can help me learn how to help my son so he can function at the highest level possible, given his medical condition.

 

So - what I am saying is that there may be some merit in the information you get from non -PANDAS docs and therapists, but you really need someone who speaks PANDAS and speaks Psychology to pull it all together for you.

 

I wish you well - hope you get someone soon!

Link to comment
Share on other sites

Kimballot...I get what your saying. When my child has little windows of normalcy, she does such a great job of applying herself. She works so hard to do the right thing. It's just then she is sick, which has been most of her life...she is id another world and you just can't penetrate the agatiation and talk to her. She is stuck talking to imaginary friends and gets so mad if you interupt. One day I was being rushed to the hospital 4 something and she stood there watching me being put on the stretcher and screaming that she wanted 2 go to block busters. This is the way she has always been. One big ball of confusion and I can't seem to explain it to anyone or get anyone 2 belieive it. My husband and sister finally see what I mean since we have been living in close quarters 2gether lately. I am so tired of trying 2 explain. She has been sick since birth. Panda docs say its a severe case. IDK.

Link to comment
Share on other sites

Kimballot...I get what your saying. When my child has little windows of normalcy, she does such a great job of applying herself. She works so hard to do the right thing. It's just then she is sick, which has been most of her life...she is id another world and you just can't penetrate the agatiation and talk to her. She is stuck talking to imaginary friends and gets so mad if you interupt. One day I was being rushed to the hospital 4 something and she stood there watching me being put on the stretcher and screaming that she wanted 2 go to block busters. This is the way she has always been. One big ball of confusion and I can't seem to explain it to anyone or get anyone 2 belieive it. My husband and sister finally see what I mean since we have been living in close quarters 2gether lately. I am so tired of trying 2 explain. She has been sick since birth. Panda docs say its a severe case. IDK.

 

I do hope this higher steroid increases your windows of "normalcy". I also still hope you are working on finding a PANDAS psychiatrist. It really takes a team of experts to help our kids - especially the older kids who have been dealing with this for a long time. Unfortunately, we have to draft the team from around the country and coach the team so they all know what each other is doing!!

Link to comment
Share on other sites

Kimballot...I get what your saying. When my child has little windows of normalcy, she does such a great job of applying herself. She works so hard to do the right thing. It's just then she is sick, which has been most of her life...she is id another world and you just can't penetrate the agatiation and talk to her. She is stuck talking to imaginary friends and gets so mad if you interupt. One day I was being rushed to the hospital 4 something and she stood there watching me being put on the stretcher and screaming that she wanted 2 go to block busters. This is the way she has always been. One big ball of confusion and I can't seem to explain it to anyone or get anyone 2 belieive it. My husband and sister finally see what I mean since we have been living in close quarters 2gether lately. I am so tired of trying 2 explain. She has been sick since birth. Panda docs say its a severe case. IDK.

 

I do hope this higher steroid increases your windows of "normalcy". I also still hope you are working on finding a PANDAS psychiatrist. It really takes a team of experts to help our kids - especially the older kids who have been dealing with this for a long time. Unfortunately, we have to draft the team from around the country and coach the team so they all know what each other is doing!!

 

Kimballot-

 

Ain't that the truth about the "drafting" & "coaching"!! Perfect analogy!--NOBODY will look out for your child as well as you will. Dawn

Link to comment
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
×
×
  • Create New...