Against Medical Advice

[Megs_Mom]

I am sitting here after chapter 7, unable to read more. I feel slightly sick. We don't have tics (do girls typically get severe tics in PANDAS? Or are girls more OCD and anorexia?), but this story reads like ours in so many ways. To here this from the mind of the child is nearly unbearable.

 

Have you all read this? I don't know the ending - but so far, this so clearly feels like PANDAS at the onset. I wonder if this is how Tourettes normally starts? My nephew has it, and he has always had it, so far as I can remember, he always had hand motions, etc. But nothing like this story, nothing this extreme from nowhere.

[monarchcat]

I haven't read it yet. I posted the other day about my stepson in his first semester at medical school listening to a neurologist speak about tourettes and tics.... well the next day they had James Patterson and Hal Friedman speak. The book was part of their "summer reading" before starting med school. I am looking forward to reading it.

[thereishope]

I have yet to read, but many say he had undiagnosed PANDAS. Here's the link to Cory's blog (the boy in the book)....

 

http://ificanhelp.com/corys-blog/

[NancyD]

I read the first half of this book today and I could tell within the first few pages that the boy must have PANDAS. I had to put it down for the day as I was feeling very depressed from reading it. Just knowing how these kids must feel and what they go through at school...so very sad!!

 

Meg's Mom, my daughter's primary issues when she was young were mood dysregulation, rages, and sleep problems. She also had one minor tic and perseverative behavior. The serious tics, anxiety, and OCD-like behaviors did not start until her pre-pubescent years.

 

Nancy

 

I am sitting here after chapter 7, unable to read more. I feel slightly sick. We don't have tics (do girls typically get severe tics in PANDAS? Or are girls more OCD and anorexia?), but this story reads like ours in so many ways. To here this from the mind of the child is nearly unbearable.

 

Have you all read this? I don't know the ending - but so far, this so clearly feels like PANDAS at the onset. I wonder if this is how Tourettes normally starts? My nephew has it, and he has always had it, so far as I can remember, he always had hand motions, etc. But nothing like this story, nothing this extreme from nowhere.

[EAMom]

Yes, I read the book and believe he had undiagnosed PANDAS.

[Megs_Mom]

Well, I just finished it. How horrid. I feel so sure this is undiagnosed PANDAS - and no ERP therapy for OCD until 11th grade. What a great kid - what an awful story.

 

In the end, it has made me feel that we are very lucky - to have the internet, this support group, this community of parents so willing to share and help - and a few doctors that are helping us find miracles every day.

[T_Mom]

Yes--I read it last year, somewhere in the midst of our severe ups and downs.

 

What touched me the most was the horror and dismay of the family...the panic that the parents felt when there seemed to be no one that could help. I knew that feeling time and again this past year-- and the sense of what it was like to go up against medical "advice"...

 

To feel like you are hanging out on a limb on your own, no one seemingly able or willing to TRY to treat your child, and on top of this horror--doctors start looking at YOU as if you had two heads when you ask about Ps-- horrible all around, been there, and done that--

...whether or not it was Ps in this book, it certainly was a walk through the valley for that young boy and his dear family.

 

I am tired -- though our d is doing well, so much better, this whole Ps thing has been a most difficult year and a half. I realize we are so much better off than so many dear ones, but this has taken the "stuffing" out of me. Tired and worried, and yet thankful we are seemingly on the mend. But tired...

[Megs_Mom]

Tired and PTSD seem to be the main words most of us use! You are not alone on that front. I am better when she is better. I am worse if she is. That is main truth. I recently said to a doctor - i cannot explain how much it means to me that you are interested in Megan. Just interested!

 

Yes--I read it last year, somewhere in the midst of our severe ups and downs.

 

What touched me the most was the horror and dismay of the family...the panic that the parents felt when there seemed to be no one that could help. I knew that feeling time and again this past year-- and the sense of what it was like to go up against medical "advice"...

 

To feel like you are hanging out on a limb on your own, no one seemingly able or willing to TRY to treat your child, and on top of this horror--doctors start looking at YOU as if you had two heads when you ask about Ps-- horrible all around, been there, and done that--

...whether or not it was Ps in this book, it certainly was a walk through the valley for that young boy and his dear family.

 

I am tired -- though our d is doing well, so much better, this whole Ps thing has been a most difficult year and a half. I realize we are so much better off than so many dear ones, but this has taken the "stuffing" out of me. Tired and worried, and yet thankful we are seemingly on the mend. But tired...

[FallingApart]

I got this book after reading this post. James Patterson is my favorite author and I didn't even know this book was out!

 

OMG, this book is scaring the bejesus out of me! For those of you with older children, how closely do you see Corey's symptoms relating to your children's symptoms? The alcoholism is terrifying!!

[michele]

I loved the book but yes the reality of teenage years is scary if we don't get a handle on things now. These kids have impulse issues and they can be more prone to drinking and drugs. Last year I went to a NAMi meeting and the lady putting it on said her adult son had TS. I was really interesed and went up and asked afterwards how is he now? I wasn't prepared for her response. He is alive since he is safe in jail. He took the path of the drugs and alcohol and made bad choices. But she was where I am now years ago and he was acting out and having behavior problems. Wow, it hit me hard. That is why I want to get him the help now.

 

Also speaking of books, Saving Sammy came out Tues, did anyone read it yet? I just don't know about the curing part. If antibiotics are a cure why are we all still having problems? If high dose antibiotics are the cure has anyone else tried that?

 

Michele

 

I got this book after reading this post. James Patterson is my favorite author and I didn't even know this book was out!

 

OMG, this book is scaring the bejesus out of me! For those of you with older children, how closely do you see Corey's symptoms relating to your children's symptoms? The alcoholism is terrifying!!