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Okay, I hope I'm not about to get flamed to a crisp here, but I am a basketcase trying to decide what's best to do since my 18yo son has recently gotten so bad that he spends most of his day ticcing & little else besides eating & the bathroom (which he doesn't always make on time anymore because he has to go thru so much just to get there). I have been looking at PANDAS trying to figure out if we should fork out the money to explore that avenue & which doctor & what tests, etc.

 

So I came across Beth Mahoney's facebook page & I see a lady asking the same basic questions I have & Mahoney graciously refers the woman to her Saving Sammy website & her "tool kit" - which turns out to cost $27.97. http://www.savingsammy.net/productsandservices.html

 

So now that I've vented & probably alienated a lot of people here, is there something worthwhile to all this that I'm just clueless about? Or is there a way to get the answers & info I need without paying for it?

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We are free, and totally there to support you. I have a 14 and 17 year old. It's tough when they get older, but the treatment they have gotten (one got IVIG and then PEX, and the other has had PEX...both have been on long term abx) was very much worth it. AND, we got insurance to pay all of it, so far (knock on wood, because they need more.)

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Sorry, but I have to add my two scents......... its very sophmoric information. BUSTER and the parents of this forum should pat themselves on the back for the information provided for free here. In my desperation 'prior' to finding Diana's website and this forum I would have paid anything to get direction and unfortunately many will spend the money.

Edited by SF Mom
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Dear Grace and other Parents:

 

Her "tool kit" lists in a very nice and simplistic way the OBVIOUS things we need to do for pandas kids. That is fine - it is benign, largely useless information.

 

The PANDASNetwork.org that I wrote outlines this info nearly identically, though, yes, her format is lovely.

 

 

I have asked Beth on several occasions to unite with me for the sake of the parents - to have a joint website -- she didn't want to in part because my sight has "medical advice." What the heck is this?

 

The docs are moving as fast as they can to get material together for this summer meeting and in the Fall more material will be forthcoming. There is a gap in time now between medical info, advice and parents seeking the advice.

 

I give it to her. She is a great lawyer and is finding an "in" where there is a gap in information.

 

I am creating a new format to the PANDASNetwork website that can be updated frequently and easily. It is all free to parents. I just do it because I care - as does Buster. And we are "professional" enough to know we are not physicians and don't have the right to charge for a "new illness" that docs are working hard to ACCurately articulate.

 

GRACE - if you need a connection in Texas. Email me at pohlmandiana@yahoo.com and I'll get it to you -- free. AND, I'll talk to you for FREE.

 

I hope this helps Beth DONATE her $27.97 to her Foundation. Where the money is really needed. I have emailed, called her and asked her to do this. Maybe it will happen.

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Grace, I just wanted to say I'm sorry that happened to you. It's an awful feeling to think you might be finding a piece to the puzzle to then be so disappointed. Like someone else said, this forum is here 24/7, FREE and a heck of a lot more experience.

 

I try to keep neutral now , but it does push my buttons when questions are answered with page numbers instead of just spreading the knowledge to parents trying to save their children.

Edited by Vickie
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Grace, welcome and I am sorry you are going through this with your children. Please stay and learn so much from this forum. The parents here have been so helpful to me.

 

Diana, thank you for speaking out and for being there for our children. 1.gif

 

Susan

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Wow. I'm speechless. Well, almost. :P

 

Grace, sorry you were so misled initially. Frankly, I am very surprised myself. "Saving Sammy" was my first real introduction to PANDAS, and upon reading it and recognizing many amazing similarities between Sammy and my own DS, I reached out to Beth via email; this was shortly after the book was first published, around mid-October 2009. At that time, Beth was amazing; she emailed me back immediately, offered support and advice, and encouraged me to move forward with my DS's diagnosis. And, for the next several months, especially before I found this forum, Beth never failed to respond to an email question or request for her experience or advice. And, no, I was never charged a dime or made in any way subject to quid-pro-quo.

 

I know, also, that there have been other PANDAS families who've had direct and frequent contact with Beth over the last several months and have equally positive experiences to report.

 

That being said, Beth recently also directed me to the "Toolkit" loaded on her web site; she failed to mention there was a cost attached. Most specifically, she said that there is a full, detailed medications schedule loaded there as was implemented for Sammy's "recovery," and I was interested in the timing of changes in dosage. It wasn't until I logged onto the site a couple of days ago that I realized the Toolkit was available at a price.

 

You have found here, however, a treasure trove of experience, information and support; it has been almost my sole "go-to" resource for the last several months. Hang in there, poke around, ask questions, PM a poster when you need something more indepth, etc. We are all here for one another, and now that includes you, too! -_-

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OMG...Grace, please please please post your son's history and any questions you have on this forum. We will help you out!

 

Here is the link to helpful threads http://www.latitudes.org/forums/index.php?showtopic=3928 which include FAQ, a flowchart, and list of docs forum members say they have found helpful.

 

If you post were you live, we may also be able to give you more specific doc advice.

Edited by Sheila Rogers
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Sorry you are going through this. What a tough time for you and your family and it sounds like it has been a long road. I too am still trying to find answers myself and although Beth has been amazing as others have said with quick email responses and support, she also directed me to her ToolKit a couple of weeks ago when we were in the midst of trying to find a doctor. She told me the ToolKit would be of great help to me. I bought it right away and am disappointed unfortunately. I have to believe she means well, but the cost was quite ridiculous for what I got and quite honestly I don't even know if I will look at it again -_-

 

Good luck and stick around...this place and these amazing people are a wealth of FREE information!!!

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It was just pointed out to me she has two CD's one she calls the Nuts and Bolts of PANDAS by she and Sammy for $14.95 and the other some sort of interview at a book signing for $9.00

 

The parents on this forum have worked really hard to find research and spent many many hours supporting each other. This is where the limelight should be. And, should I ever be "interviewed" by some fabulous t.v. show or local press ---- this is where the light would shine on everyone's efforts.

Edited by Sheila Rogers
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Thank you so much everyone! I have been feeling so alone in deaing with all this & it brings tears to my eyes to have so much unexpected support (esp when I was feeling so witchy for posting the way I did earlier). I am going to try to rest my brain cells for the night (my son actually made it into his bed by 12:07 for a change!! Thank You, Lord!!) and come back here with a better attitude & my questions tomorrow!

 

~Grace

Edited by GraceUnderPressure
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Hmmm......Timing is interesting. I live here in Maine (Portland area) and yesterday there was a pretty large front page article on Beth and Sammy and Pandas in the Portland Press Harold (biggest paper in the state). Her book is pictured as are both Beth and Sammy. I reread it to see if I could find mention of her website but found none. It mentioned the episode of mystery diagnosis coming up June 14th and that she will be speaking at the International OCD Foundation conference in July.

 

Ellie

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