Has anyone gone to the media regarding PANDAS?

[momtocole1]

Have any of you contacted your local newspaper or TV stations to request an article/interview on PANDAS?

 

I contacted our local paper on Friday. I want to "go loud" on this disorder. I am really angry that there are so many kids suffering. If it were not for this board I can honestly say I don't know how I would have ever gotten IVIG for my son.

 

When I was coming home from the airport on Friday night, my son was commenting on all the beautiful Christmas lights around our neighborhood. We did not get lights this year because money has been tight and we needed to spend on the trip to Colorado for IVIG. I asked my son if he would rather me use the money for presents or lights and he said "I just wish we had lights". Just as he said it, we rounded the corner to our house and it was lit up from top to bottom.

 

I burst into tears, 14 of our neighbors and friends in our town, pitched in and hire a person to come and put up Christmas lights. Isn't that the sweetest most thoughtful thing. My neighbor coordinated everything and they actually bought all the lights too so we can use them next year. It just touched me so much. My next door neighbor said that they have all been so worried about us because of my son's illness and the trip etc, and that every time I see the lights that I should picture them all hugging me.

 

The reason I am wanting to go to the press about this is because I think it is a good human interest story. I could tell the reporter all about PANDAS, the trip for the IVIG, the doctor (not mentioning names!) that refused to submit to insurance and then about amazing support from our community.

 

I spoke to a reporter on Saturday and he is just about to leave the newspaper but he said that after everything that he heard, he can't imagine them not wanting to do a story on it.

 

I just feel so strongly that we all need to scream out about this. Children and families are suffering so much and some don't even know that there kids have PANDAS so they are not even on the forum.

 

Please share your thoughts...

 

Thanks,

 

Judy...

[momaine]

This made me cry. Some day it would be nice to have come out the other side of this and feel like sharing about this journey in order to help someone else. We're barely functioning as a family right now and I can't even imagine it at this point. Not sure if my dd would feel good about doing that or if it would be too much information for her to share about her private struggles. I'm thankful to those who do it though.

Angela

 

Have any of you contacted your local newspaper or TV stations to request an article/interview on PANDAS?

 

I contacted our local paper on Friday. I want to "go loud" on this disorder. I am really angry that there are so many kids suffering. If it were not for this board I can honestly say I don't know how I would have ever gotten IVIG for my son.

 

When I was coming home from the airport on Friday night, my son was commenting on all the beautiful Christmas lights around our neighborhood. We did not get lights this year because money has been tight and we needed to spend on the trip to Colorado for IVIG. I asked my son if he would rather me use the money for presents or lights and he said "I just wish we had lights". Just as he said it, we rounded the corner to our house and it was lit up from top to bottom.

 

I burst into tears, 14 of our neighbors and friends in our town, pitched in and hire a person to come and put up Christmas lights. Isn't that the sweetest most thoughtful thing. My neighbor coordinated everything and they actually bought all the lights too so we can use them next year. It just touched me so much. My next door neighbor said that they have all been so worried about us because of my son's illness and the trip etc, and that every time I see the lights that I should picture them all hugging me.

 

The reason I am wanting to go to the press about this is because I think it is a good human interest story. I could tell the reporter all about PANDAS, the trip for the IVIG, the doctor (not mentioning names!) that refused to submit to insurance and then about amazing support from our community.

 

I spoke to a reporter on Saturday and he is just about to leave the newspaper but he said that after everything that he heard, he can't imagine them not wanting to do a story on it.

 

I just feel so strongly that we all need to scream out about this. Children and families are suffering so much and some don't even know that there kids have PANDAS so they are not even on the forum.

 

Please share your thoughts...

 

Thanks,

 

Judy...

[ajcire]

I do think it would be a great help to have people do this on a smaller scale then books and large newscasts... local reports in local papers would surely catch peoples attention. People they know, in their community makes it more real.

 

You have some truly incredible neighbors/friends.

[thereishope]

How wonderful to know you have a community behind you like that! I have gone to the newspapers and local free family magaines, and never heard back.But..I did not have a story of community like yours!

 

I can see the local news wanting to do this. Same with papers. Best of luck and have a happy and blessed holiday!

[peglem]

Judy, What a beautiful story! Glad to hear you have so much love and support around you. Please link the article when it comes out.

[mom md]

Wow. That made me tear up and I definitely think it is worth being in the news for multiple reasons. I did call a reporter friend of mine who retired but she said she would have the FOX new anchor contact me. Unfortunately she did not but I will keep trying. I am glad you are home from IVIG too. YEAH!!! I hope we will be in the same boat soon.

[forjpj]

So, nice to hear such a wonderful Christmas story. It is so true...you really do find out who your friends are during times like these. I emailed our local editor of the health section who I used to know in another life but haven't heard back from her. I was hoping she would run something on it. I don't think I am ready to tell our story yet...to much chaos...like you say I need to "come out on the other side first." I've been passing the Saving Sammy book out like crazy though. A low point was when I snapped at the teacher in the car rider line who questioned my son and me about not having a coat. I said something to the effect of ..."I'm lucky to get him to school." A few minutes later I went back, apologized, and gave her a Saving Sammy book. Told her to skim it or read it, just pass it on!