Saving Sammy

[dcmom]

Last night I read "Saving Sammy" by Beth Maloney from cover to cover. She presented pandas, the struggle of the child and the family, the refusal of doctors to help, and the science of the disorder in an easy to read and moving format. I really thought she touched all of the bases.

 

I can't help but feel compelled to do something. Right now, I feel the biggest problem with pandas is the lack of diagnosis. Sammy, like so many of the kids on this forum, could have avoided so much suffering and lost time if someone had the knowledge, courage, and taken the time to suggest pandas. A simple strep test, a trial of antibiotics, a trial of steroids. Frankly, that is a lot more cost effective and painless for kids and parents than months of intense therapy (that doesn't end up working anyway).

 

But, we all know this.

 

So, how do we get the word out? My initial plan is to write a two page letter about my daughter's story, and give it to people who might be key in helping someone else. I will include my info, along with pandas network and saving sammy. But, who to give it to? Local pediatricians? School special ed teachers and psychologists?

 

I also plan on buying a few copies of the book, including my letter, and asking people to read it and pass it on.

 

I would really love ANY thoughts about how to get involved in helping parents,doctors, etc. to recognize pandas quickly!

[thereishope]

I've thought about writing a letter and distributing to local peds, psychologists and psychiatrists, but have yet to follow through.

 

I have yet to read the book. I'm waiting for my library hold to come in. I also want to wait to promote it until I see her Today Show appearance and see if she at all touches base on how some families need to go steps further and do IVIG and PEX. I want to be careful to promote the book to peds if they might read it and think antibiotics are the "cure all" for everyone.

[momtotaylor]

Last night I read "Saving Sammy" by Beth Mahoney from cover to cover. She presented pandas, the struggle of the child and the family, the refusal of doctors to help, and the science of the disorder in an easy to read and moving format. I really thought she touched all of the bases.

 

I can't help but feel compelled to do something. Right now, I feel the biggest problem with pandas is the lack of diagnosis. Sammy, like so many of the kids on this forum, could have avoided so much suffering and lost time if someone had the knowledge, courage, and taken the time to suggest pandas. A simple strep test, a trial of antibiotics, a trial of steroids. Frankly, that is a lot more cost effective and painless for kids and parents than months of intense therapy (that doesn't end up working anyway).

 

But, we all know this.

 

So, how do we get the word out? My initial plan is to write a two page letter about my daughter's story, and give it to people who might be key in helping someone else. I will include my info, along with pandas network and saving sammy. But, who to give it to? Local pediatricians? School special ed teachers and psychologists?

 

I also plan on buying a few copies of the book, including my letter, and asking people to read it and pass it on.

 

I would really love ANY thoughts about how to get involved in helping parents,doctors, etc. to recognize pandas quickly!

 

Great idea! I have not read the book yet, but I am going to get it today. I will think about what you just said and try to come up with some ideas.

 

P.S. Beth and Sammy should be on tomorrow between 8:00 and 9:00!! I can't wait.

[thereishope]

Do you have a facebook account? You can start a Saving Sammy group or fan page. You can also send a link to the book to your friends.

[dcmom]

Vicki- I had the same concerns as you. But although to us it might seem like the "cure" was a little oversimplified- I think the struggle and the suffering, and the total lack of help from the medical community, are key. I was also pleased that her doctor did tell her (and she did) to start looking into getting PEX or IVIG if the antibiotics didn't work. They really did not talk negatively about those options. He did HIGH doses of augmentin, and many times when he tried to come down the symptoms resurfaced. She also did say this is something he will probably always struggle with. All in all, I think you will be happy with it.

 

My one and only concern is that Sammy was a much more severe case than my daughter. Possibly because it went on for much longer. When I thought Julia had pandas, my ped disagreed because she said "those kids can't function at all". (Well dd 5 had to go to school in pjs because she couldn't get dressed- so I argued that wasn't really functioning). I just hope that the medical community can realize there are different degrees of episodes, and possibly it starts more subtley sometimes. But, it really is a great book!

 

I did just put it on my facebook page...

[Kayanne]

Awesome ideas.....I was going to pick the book out today...I have a lot of errands today, so I probably won't be on the forum much.

 

I was thinking of donating a copy to the library/school too.

 

I have been thinking a lot about how I can help...many of you know that we are in a great place right now, because it was caught early so I feel like I should be doing more.

 

I had mentioned starting a foundation to Diana once on the phone, and she said that it was not something she felt like she could deal with--perfectly understandable--she is really on the front lines of this.

 

I've googled starting a foundation a few times...I really think it would be like starting a corporation...I've also been thinking about a writing a book...or somehow working with the people who have the rights to The Velveteen Rabbit, and publishing an edition that has information about strep related illnesses in the back...you know how a lot of kids books have an informative section more for educational purposes.

 

DCMom...we think alike...I was thinking of putting together an informative brochure, having it done by a printer, and just distributing it to schools, and peds offfices.

 

I imagine there will not be a lot of activity on the forum today because people will be reading the book.

 

I've got to go...lots to do today.

 

~Karen

[dcmom]

Karen-

 

We do think alike. I was thinking about designing an eye-catching, glossy, postcard about pandas. (postcards are cheap) I thought possibly it could be mailed/ given to pediatricians, psychologists, school personnel, etc.

 

Maybe if I work on a postcard, I could make it available to parents on the forum and through pandas network to purchase directly from the printer and distribute in their "neighborhood". Kind of like a grassroots effort.

 

I mean, if each of us could spare one child from losing as much time as Sammy did...

 

Would everyone/anyone be interested?

 

If so email me sroka2967@comcast.net, and I will email some ideas/designs for your input. (In a few weeks...)

[T_Mom]

Just finished Saving Sammy last night--mirrors our personal experience in many ways--we also had to carry our child at one point.

(Though we stumbled upon the fact that antibiotics full strength were effective in our case, with a boost along the way from prednisone.)

 

Good book Beth Mahoney-- You have put us on the map!

 

Thanks again Dr. Nicolaides for being willing to treat.

Let's start passing it out everyone--

 

 

1. A one-day invited conference in the Washington DC area. (Would be willing to work with one or two others on this to see if it could happen within the year.)

2. A small booklet of information--could be a pdf and emailed, or hard-copy.

[T_Mom]

I've thought about writing a letter and distributing to local peds, psychologists and psychiatrists, but have yet to follow through.

 

I have yet to read the book. I'm waiting for my library hold to come in. I also want to wait to promote it until I see her Today Show appearance and see if she at all touches base on how some families need to go steps further and do IVIG and PEX. I want to be careful to promote the book to peds if they might read it and think antibiotics are the "cure all" for everyone.

 

Hi Vickie--I think what needs to be looked at is that he had a dramatic change--with full-strength long term antibiotics, adjusted as necessary-- and the doctor tested other issues to try to rule out all other possible problems. -- this was not typical prophylactic use-best,

T.

[thereishope]

My husband works on things like product packaging. If you need any help w/ a postcard, perhaps he can help. Do you know if the old PANDAS logo is still in use? That sad looking panda bear?

 

Also, in regards to my comment, I have not read the book yet and don't know her full story. I see the book is being transferred between libraries and hopefully I will get it tomorrow. It's sad that we have a big library system and they have only 5 copies for the whole county. My branch is the busiest and they're not even going to get one.

[thereishope]

Okay, you can tell I'm a big "facebooker". You can always start a cause page and open a non profit account that people can donate to. However, I don't know much about those kind of accounts.But you can pick who that money will go to (ex. Cunningham for further research). All foundations have to start somewhere, right?

 

I've googled starting a foundation a few times...I really think it would be like starting a corporation...I've also been thinking about a writing a book...or somehow working with the people who have the rights to The Velveteen Rabbit, and publishing an edition that has information about strep related illnesses in the back...you know how a lot of kids books have an informative section more for educational purposes.

 

Karen

[ajcire]

vista print has inexpensive, often free except for shipping deals on postcards, pamphlets, and the like.

[ShaesMom]

Last night I read "Saving Sammy" by Beth Maloney from cover to cover. She presented pandas, the struggle of the child and the family, the refusal of doctors to help, and the science of the disorder in an easy to read and moving format. I really thought she touched all of the bases.

 

I can't help but feel compelled to do something. Right now, I feel the biggest problem with pandas is the lack of diagnosis. Sammy, like so many of the kids on this forum, could have avoided so much suffering and lost time if someone had the knowledge, courage, and taken the time to suggest pandas. A simple strep test, a trial of antibiotics, a trial of steroids. Frankly, that is a lot more cost effective and painless for kids and parents than months of intense therapy (that doesn't end up working anyway).

 

But, we all know this.

 

So, how do we get the word out? My initial plan is to write a two page letter about my daughter's story, and give it to people who might be key in helping someone else. I will include my info, along with pandas network and saving sammy. But, who to give it to? Local pediatricians? School special ed teachers and psychologists?

 

I also plan on buying a few copies of the book, including my letter, and asking people to read it and pass it on.

 

I would really love ANY thoughts about how to get involved in helping parents,doctors, etc. to recognize pandas quickly!

 

Our city library's do not even have a single copy of this book. Isn't that sad!

 

I personally would like to see the schools educated on Pandas and what the first signs look like. Sadly, it was our daughter's teacher and school officials who were pushing for the psychological dx. Even today with how much she has improved I'm not really sure they get it.

 

I'd like to see every elementary school sending home a letter to students parents with information on Pandas and its relationship to strep annually.

[thereishope]

There is a fan page on fb for it already. No activity for it yet, though.

 

http://www.facebook.com/search/?flt=1&...2.2014666233..1

[monarchcat]

I'd like to see every elementary school sending home a letter to students parents with information on Pandas and its relationship to strep annually.

 

That is a fantastic idea.