My neighbor is the Washington Post family

[HT's Mom]

I see that the article in the Washington Post has been a topic in several threads, and I thought I'd put it out there that I know this mom. Their family lives in our neighborhood, and the mom and i are planning to get together next week. I had not been aware she was talking to the paper, but after it was published we communicated about it and I'm hoping to ask her more questions, update her on my ds, etc. I'm not sure if she's on the forum much, so if any of you have additional questions about their child's PANDAS, treatment, etc, let me know and I will talk to her and post a followup if she says she is comfortable with that.

[eljomom]

I am interested in knowing what Dr. Elia did/recommended other than T&A? From the sounds of it, it seems like a 4 week round of abx did the trick. Then the tonsillectomy? Were his "labs commonly found in pandas patients" the ASO titers?

Thanks,

[Kiera]

Yes, I too would just like to get the inside scoop on the timeline of treatments they did - any steroids, IVIG etc. Also, did he get strep throat often, hence the tonsillectomy, or was that purely a preventative measure? Thanks.

[smartyjones]

i'd like to know more about the school phobia -- it mentions 'peeling off her and dragging into school'. does she have any insights or coping ideas to share? did that just go away when he was healthy?

 

thanks.

[T_Mom]

Thank you HTsMom,

Would you be able to ask Christina Teague the following for me?

 

First, please THANK her for sharing her story so others might learn, and in the Washington Post! Wonderful!!!

 

1. Would she possibly be willing to sign onto the forum and give us her summary (so much can be left out in the media.) Info. re: the history of symptoms and treatments for the 2 to 3 years? Particularly, did he ever have a positive strep test, the course of treatments that were tried along the way.

 

My BIG question is about the tonsil/adnoids removal.

From the article it is presented as the possible "cure" -- as if that was what Dr Elia prescribed as the remedy. Does Christina think that is Dr Elia's perspective, or was this an "after-thought" -- just an idea?

 

Do others doctors think this is KEY? Could this be KEY? ... now that would be something wouldn't it! (one can only wish it was that simple.)

Thanks HTs Mom--give her a big hug from all of us.

[HT's Mom]

I will ask her all these questions and see if she will sign on to tell more! She had actually approached me when we moved into the neighborhood, because she had heard about my ds through a mutual friend. So she was helpful to me in the beginning of our second round of PANDAS craziness last winter in terms of what antibiotics and local doctors would be helpful. I don't think they ever did IVIG, although we did. I'll find out more about why not, etc. and let you all know!

[T_Mom]

Hi HTsMom-- Any word from your neighbor? Thanks--

[HT's Mom]

Hi HTsMom-- Any word from your neighbor? Thanks--

 

 

Yes, i just haven't had time to post, and don't right now. Will update you all tomorrow!