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Kids and Lyme Disease article - NY


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Hi there,

 

Thought I would share an article that ran in upstate NY paper featuring my ds4, promoting awareness of Lyme. Front page, cover story! Thank goodness I didn't come across like a neurotic Lyme mom! And they actually included the 7% get a bulls-eye rash! .... not 70%. (Laura - I think Plattsburgh paper will be calling you. Times Union wanted a child closer to Albany). Hoping to see more articles featuring our very brave kids :)

 

http://www.timesunion.com/default/article/Lyme-disease-Focus-on-a-shadowy-ailment-1376595.php

 

Darlene

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Darlene,

 

The article looks awesome!!! Can't wait to share it! Way to go! BTW, if it helps to use my kids real names, we aren't opposed. We just made it more fun to make up names!

 

Kristie

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Nice job! You don't come off as neurotic at all. But don't you wish they gave it ten pages to talk about so much more, and how hard it was to figure out what was wrong? What gets figured out in one paragraph sums up such a long, exhausting, expensive journey!

 

Glad you're starting a website focused on lyme kids. Considering that kids are one of the largest populations of lyme victims, surprisingly little is out there that talks about their needs and symptoms. I was wondering - while you need facts for the site, not anecdotes, is it worth starting a thread that talks about the things that things our kids experience? And how it's the same or different from other diseases (e.g. Pandas)?

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Nice job! You don't come off as neurotic at all. But don't you wish they gave it ten pages to talk about so much more, and how hard it was to figure out what was wrong? What gets figured out in one paragraph sums up such a long, exhausting, expensive journey!

 

Glad you're starting a website focused on lyme kids. Considering that kids are one of the largest populations of lyme victims, surprisingly little is out there that talks about their needs and symptoms. I was wondering - while you need facts for the site, not anecdotes, is it worth starting a thread that talks about the things that things our kids experience? And how it's the same or different from other diseases (e.g. Pandas)?

Good idea!

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Thanks Kristie. Hoping to get your "story" done this weekend. Sorry I've been out of touch! One more paper in Ny is printing in a week, another 2 in western NY are hopefuls. Amazing how the reporters are SOOO astonished to hear our kids stories. They just don't have any idea and have never heard of the neuropsych stuff associated with Lyme. I explained PANDAS but could see the reporter was too confused to include both illnesses in the same article. So, for now, just focusing on Lyme is a challenge and getting them to include "our" information as opposed to the one-sided CDC stuff.

 

 

 

 

)

Darlene,

 

The article looks awesome!!! Can't wait to share it! Way to go! BTW, if it helps to use my kids real names, we aren't opposed. We just made it more fun to make up names!

 

Kristie

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Thanks. I figured it would be buried in the back of the paper, so to have lead story on the cover, was astonishing. But honestly, as we all feel, wish "we" didn't have to be in the paper at all! And yes, it's amazing how they just wrap it up so easily but better for readers I guess. Much easier to understand. At least they got the 7% figure in there about the rash, I kept pounding away at that point with her.

 

There are some associations that do great jobs of including info about children and Lyme but as we all have learned it takes a lot of searching to find stuff and figure things out. Can't imagine where we'd be without the parents from this forum! We found both docs and so many other recommendations that helped ease our short but intense journey so far. The "network" is truly in its infancy, nothing but a holding page. I'll be reaching out for volunteers or anyone who's interested in getting involved, as I certainly need everyone's input and knowledge (far more than mine.) On that note, feel free to let me know if you'd like to be involved somehow. (Kmom is already on board.)

 

 

Your suggestions about ancedotes is SO right. And a great thing to include. Just simple things like tips on how to handle a vacation while in treatment would be awesome. (I learned from this forum about the Disney Guest Assistance pass and it saved us. After the vacation, I read someone suggesting not to change meds on vacation or before because of herxing. We did that and the last week of vacation was terrible! Now we know, it was a herx. :wacko:

 

Thanks again.

 

 

Nice job! You don't come off as neurotic at all. But don't you wish they gave it ten pages to talk about so much more, and how hard it was to figure out what was wrong? What gets figured out in one paragraph sums up such a long, exhausting, expensive journey!

 

Glad you're starting a website focused on lyme kids. Considering that kids are one of the largest populations of lyme victims, surprisingly little is out there that talks about their needs and symptoms. I was wondering - while you need facts for the site, not anecdotes, is it worth starting a thread that talks about the things that things our kids experience? And how it's the same or different from other diseases (e.g. Pandas)?

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Thanks. I figured it would be buried in the back of the paper, so to have lead story on the cover, was astonishing. But honestly, as we all feel, wish "we" didn't have to be in the paper at all! And yes, it's amazing how they just wrap it up so easily but better for readers I guess. Much easier to understand. At least they got the 7% figure in there about the rash, I kept pounding away at that point with her.

 

There are some associations that do great jobs of including info about children and Lyme but as we all have learned it takes a lot of searching to find stuff and figure things out. Can't imagine where we'd be without the parents from this forum! We found both docs and so many other recommendations that helped ease our short but intense journey so far. The "network" is truly in its infancy, nothing but a holding page. I'll be reaching out for volunteers or anyone who's interested in getting involved, as I certainly need everyone's input and knowledge (far more than mine.) On that note, feel free to let me know if you'd like to be involved somehow. (Kmom is already on board.)

 

 

Your suggestions about ancedotes is SO right. And a great thing to include. Just simple things like tips on how to handle a vacation while in treatment would be awesome. (I learned from this forum about the Disney Guest Assistance pass and it saved us. After the vacation, I read someone suggesting not to change meds on vacation or before because of herxing. We did that and the last week of vacation was terrible! Now we know, it was a herx. :wacko:

 

Thanks again.

 

 

Nice job! You don't come off as neurotic at all. But don't you wish they gave it ten pages to talk about so much more, and how hard it was to figure out what was wrong? What gets figured out in one paragraph sums up such a long, exhausting, expensive journey!

 

Glad you're starting a website focused on lyme kids. Considering that kids are one of the largest populations of lyme victims, surprisingly little is out there that talks about their needs and symptoms. I was wondering - while you need facts for the site, not anecdotes, is it worth starting a thread that talks about the things that things our kids experience? And how it's the same or different from other diseases (e.g. Pandas)?

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Ksole,

 

Hi. Glad it was helpful. Did I email with you through the Network email?

 

darlene

 

 

 

Thank you for the article, my son is treated for his lyme induced autism in Albany and I found you article hopeful !!!

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  • 2 weeks later...

I don't think so , I checked back thru my email. I am going to Albany with my son on Thursday 26 of this month, and we are new to this as of January and was wondering (I know each child is different) but...aprox how long is the recovery ?

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