Jump to content

Stories I ran across today that you guys might be interested in


briarrose
 Share

Recommended Posts

Steph..

good articles... it kinda makes me feel sad to see kids so young have pots.. Imena my lord they are kids.. they should be living a FuLL kid life!!

I know I often feel like I have been "robbed of anormal" life.. I have had pots since forever.. and I can remeber being 13- and 11- and 15.. and knowing something wasnt right with me.. and really knowing that i didnt feel good.. and nearly 9 yrs later i got diagnosed with pots.. and add another 3 yrs after dianosis... my god a good 12 yrs living like this!! and I can remerb thimes as alittle girl I mean like 4 yrs old.. where I had symptoms of pots...

Oh well.. at least I have all of you!! and a great dr.. Dr. grubb! god bless him!!

sorry kinda went off on a mini vent there... :)

Link to comment
Share on other sites

One of my neighbor's kids has POTS, and was diagnosed this past summer and went to the camp that DYNA runs each year. She's only 10 and it was very hard for her to see all the kids in wheel chairs, but at the same time, it made her feel lucky.

Nina

Link to comment
Share on other sites

Oh my bless that little girl...

it just adds fuel to the burning fire growing inside of me that I so WANT to go to nursing school...wheni first considered nursing school.. I knew that i wanted to work with the kids.. be it sick kids or healthy kids..

Point blank I wan to work in the NICU.. with preemie babies... and I also thought that I'd like to go work for St. Jude's children Hospital or any childrens hospital... though I was not terminally ill as a child I was sick and in and out the hospital.. and I thnik that I would have something to offer these kids as well as there parents/family..

here i go again.. rambling tonight!

Edited by dizzygirl
Link to comment
Share on other sites

Hello Everyone!

Having attended the DYNA Summer Chill for the past 2 years and having the youngest child there (8 years old) at both events I can honestly say we have never been depressed actually each year we have been inspired. As far as the child from PA. we do not have a 10 year old registered from PA. that I am aware of.

Last year we only had 2 kids in wheelchairs and 1 of them was in a wheelchair do to surgery not Dysautonomia.

If you would like to find out more about Dyna please visit our website at www.dynakids.org or email the Dyna office at www.info@dynakids.org. We would be happy to share with you our Summer Chill stories or just basic information.

Thank YOu very much for giving me the chance to clarify. Hope all of you have a safe and healthy Holiday.

:lol:

Link to comment
Share on other sites

Thx all

Mi mom

I love DYNA, you guys have some great information posted there and I've given out your web link many times over the past few years, keep up the great work over there. I can easily see how the conference would be inspiring and a relief for the kids inflicted with the illness, it gives them the chance to see so many others like them.

So are you saying that the stories posted and everything in them are false?

Isn't Debra Dominelli your president?

Link to comment
Share on other sites

Hi,

The yougest diagnosed with POTS and NCS in my family is 5 years old. I feel so sorry for him because he is very symptomatic at such a young age.

I don't remember feeling healthy at all. I don't even know what it is not to have pain.

I did not realise that dysautonomia was only recognized in 1996. I am glad to at least know what I have.

Thanks Step for the links.

Link to comment
Share on other sites

Hello Everyone!

Having attended the DYNA Summer Chill for the past 2 years and having the youngest child there (8 years old) at both events I can honestly say we have never been depressed actually each year we have been inspired. As far as the child from PA. we do not have a 10 year old registered from PA. that I am aware of.

Last year we only had 2 kids in wheelchairs and 1 of them was in a wheelchair do to surgery not Dysautonomia.

If you would like to find out more about Dyna please visit our website at www.dynakids.org or email the Dyna office at www.info@dynakids.org. We would be happy to share with you our Summer Chill stories or just basic information.

Thank YOu very much for giving me the chance to clarify. Hope all of you have a safe and healthy Holiday.

:lol:

Hi Briarrose,

My response was to MightyMouse when she said a neighbor had a child that went to the Summer Chill. I noticed she is from PA. but we do not have any 10 year olds from PA, and it was said that the little girl that is MightyMouse's neighbor was upset at all the wheelchairs. As I stated earlier there were only 2 wheelchairs, and only one being used for a Dysautonomia child.

I am so so sorry if I ruffled any feathers, I just wanted to make sure we are all on the same page with stories.

Yes, Debra D. is the founder and president. Do you know her, she is quite remarkable don't you think?

Again, have a great evening, and a safe Holiday. Mi.Mom :lol:

Link to comment
Share on other sites

some of the confusion may be that - i think? - nina (mightymouse) actually lives in NJ, just outside of PA...

Link to comment
Share on other sites

Actually, I live very near Philly, but am in a NJ suburb, as Melissa stated. And, I may be off by a year or so on the age, as I know her via a team sport that has a 3 year age range--and I am accurate in saying she and her mom were a bit shaken afterward. She'd only had the dx for a short period of time and I think they were very early in the acceptance proceess, and probably just weren't ready to see the full spectrum of dysautonomia. Even one wheelchair was something they weren't ready for.

Mi.Mom, while I appreciate your point, I wasn't saying that DYNA's camp was bad in anyway. I think that it's a great thing--I also think that this particular family didn't realize how sick some kids can get. I seemed, however, that you were trying to insinuate that I'm not telling the truth.

I can see that you are very new here, so you haven't had a chance to get to know me, nor I you. However, a simple private, personal message could have cleared this up quickly--and in the future, I would ask that you extend that courtesy to me as I would to you.

Nina

Link to comment
Share on other sites

MightyMouse,

Oh my gosh, I am so sorry if you felt that I was insinuating that. By no means would I ever say that about anyone. I am very up front, and wish not to hurt anyones feelings.

If someone were to post a recipe and say you need 3 cups flour, 1cup sugar, 2 sticks margerine, and on, and on, and the last ingredient 1/4 cup salt. Well that would seem like alot of salt and I would simply post back and ask if the salt was correct. I did not think or realize if you are asking a question or replying to a response that you need to do it personally.

I simply was responding to a post, and if I upset the cart I apologize.

Sincerely, Mi.Mom

Link to comment
Share on other sites

wow briar rose you always find the greatest links about things. sorry for the delay, just read it.

You should write a whole guideline with all links you have found over time it would be priceless I'm sure. You are a great researcher. Thanks for taking the time out to do so.

have a good holiday

Link to comment
Share on other sites

Guest Finrussak

Steph/Briarrose

Thanks for taking the time....my 16 yr old now shows sign of it probably due to being so ill with MTBI for past 3 years....so Now I am dealing with my sx AND his...plus the usual teen "attitude" crap.

Persephone

Dr Grubb sees adults...he dx me last June...call and be put on a waiting list...travel may be hard but itll be worth it as he not only is willing to interact with your local Drs but he is more " approachable" than any other expert I have personally spoken with or contacted!!! I had thought this compassionn was due to his own challenges with recent and ongoing severe illness, but as I get to know him and others under his care its obvious that he is just that kind of person!!!!

F.

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

 Share

×
×
  • Create New...