My 17 yr old son was dx today with POTS

[danelle]

With everything going on with my health, my ssdi denials, my financial and family situations-what could get worse? Let me tell you what can get worse. My wonderful,huge hearted, fun-loving, full of life son was diagnosed with POTS today. I had suspected it for sometime and I got my answer today. My world has crashed down around me. Whoever says God won't give you more than you can handle has never had such a load. God help me and my family-ESPECIALLY MY BABY BOY

Danelle

[teacherdiva]

Danelle,

My heart goes out to you in this difficult time. The only silver lining is that at least you have a diagnosis at this point. It'll be a tough journey, but now that you know what he is fighting against...the doctors will be able to at least begin to try and help him.

Here's a quote that keeps me strong: "If God brings you to it, he'll bring you through it."

[Ernie]

Hi Danelle,

I am so sorry for your son's diagnosis. I don't really know what to tell you to make you feel better.

One thing I focus for my family is that I tell myself that the next generation will have better care than us because doctors are researching.

Try not to feel guilty about it. You cannot control genes.

Hugs

Ernie

[geneva]

Oh, Danelle, I am so sorry to hear this news. It is one thing when WE are sick but quite another when one of our children is stricken. My heart goes out to you. How old is your son and how is he feeling? I hope that you have a support system in place that can help you manage through this latest news.

[MightyMouse]

Danelle, the only good part is that you can at least mentor him through this journey. Also, an early diagnosis is something of a blessing--he will have access to the treatments that can help him do his best in the future. But, the really awful thing is that he has POTS too. How does he feel about all this?

Nina

[DawnA]

Danelle I feel for you. I can totally relate. My daughter was just dx with POTS a year ago. before that my youngest daughter was diagnosed with Crohn's. It is soo hard when it is your children. My biggest concern is will I be able to help them when they are really ill. What if I am to ill to take care of them...don'

t mean to add to your concerns.

I hope some good things start happening for you...your SSDI goes through and your sons POTS is mild and he is managing OK. At least he has you to understand how he feels.

I am glad that I understand what my daughter is going through and she was able to get an early dx. My husband is in denial and can be really hard on her at times. I always have to stick up for her. I wish he would listen not just hear one of these days. It is very frustrating.

Best Wishes,

Dawn

[dawn]

So sorry to hear about your son. I suspect my 24 year old son has POTS too. He refuses to be tested. I think I also had POTS since birth. My mother said I would never use my arms to pull myself up, wouldn't hold onto a railing when I climbed the stairs even screamed when she lifted my arms as an infant to put a shirt on or off.

I remember my first EKG at age 18 before starting nursing school, I had resting heart rate of 126. I had several treadmills in my 20' and 30's and always had a max heartrate of 240's and my heartrate would not come down after exercising. They would finally let me leave after sitting an hour with a 140 heartrate. What are your sons worst symptoms? It seems like when I was younger I could tolerate the symptoms better.

I was a fainter. When I was young I would faint, smoke a cigarette then feel fine. My doctor says the nicotine constricted my blood vessels as they don't constrict on their own. He says my vessels are rubbery llike a baby's and I am 49 now. Just wondering where he was diagnosed and what their recommendations are.

Wish you the best.

[morgan617]

I'm so sorry Danelle. As I've stated in earlier posts, I have a son who developed arthritis at the ripe old age of 11, then crohn's, then hyperparathyroidism, and asthma, plus severe reflux with a history of ulcers. There is nothing worse than having to see your child suffer, especially if you are also sick. It's so hard to take care of ourselves, and then to have our children get sick. I tell him I would take it from him and on me in a millisecond, but that can't be done. I think he may have pots too as he always has a very fast heart rate. All we can do is the best we can. Jake has been sick for 12 years now and has maintained his sunny and sweet personality. He is such a joy to me and he gives me a reason to get up and go on. I will be praying for you and him and know the two of you can get through this together. My husband cares, but doesn't get it, so to speak. So you just do what you can. HUGS, morgan

[corina]

Danelle,

having children myself, this is my biggest fear. I am so sorry for you and your son. Like Morgan said, we would like to take over everything without thinking a second time. We so want our children to be healthy and just be happy and have fun. Your son is lucky to have you as his mother because you can understand and help him. Wishing you and your son a lot of wisdom,

Corina

[MomtoGiuliana]

I hope for the best for you and your son and family. It is so natural to fear the unknown and be anxious about your child's health. I agree with Ernie that understanding about this condition is improving all the time. Treatments WILL be better for his generation than for ours. I worry about my daughter, too, since POTS is in my family, so I do understand your worries and fears.

And we do all know that while POTS CAN greatly affect our ability to do some to many things, it is not going to end our lives.

Hopefully your son will end up with only a very mild case. Not everyone experiences severe disability with POTS.

Good thoughts your way...

Katherine

[Guest tearose]

Hi there Danelle, I am so sorry at the latest development. We want so much for our children to "have a good and healthy llife". The blessing is for your son, my dear danelle, is that he has you for a role model! You speak from your weary heart and as a mom I understand. But he is young and resilient and with your words and encouragement will rise up just as you have!

When I feel life has given me more than I can manage "gracefully", I demand more grace! I am not religious but I am spiritual and feel that you will get through this trial! I like to look up to the heavens and say okay, god, you gave me this challenge so give me the strength to deal with it!

and now in a lighthearted tone: for pity sake danelle, don't ever ask "what next?" never tempt god! she might just be in a funky mood and toss something else your way!

Please take some time today, to stop and sit in "this" moment. In this moment you breathe, you know the love of a wonderful man, of a son, of family, of friends...in this moment there are no worries, no financial concerns, there is just this peaceful moment.

See, that wasn't so bad. And of course all that messy stuff of life is here when you come back from your one peaceful moment!!! But wasn't it worth it?

with you in spirit, tearose

[avais1]

I am with you in prayers and spirit. We will overcome this someday. Your son does have an added gift: A mother who has been there, understands, and can guide him through this journey. You are very strong, even though you do not feel so. It is in times of trouble that one is actually strongest, because you are actively fighting forward. In times of complacency, we are just sitting there. Keep pushing forward, and when it gets too much "float" for awhile. The tide will turn, it always does. Just as the good times never last forever, neither do the bad. Wait for the tide to turn.

[lindaf]

With everything going on with my health, my ssdi denials, my financial and family situations-what could get worse?  Let me tell you what can get worse.  My wonderful,huge hearted, fun-loving, full of life son was diagnosed with POTS today.  I had suspected it for sometime and I got my answer today.  My world has crashed down around me.  Whoever says God won't give you more than you can handle has never had such a load.  God help me and my family-ESPECIALLY MY BABY BOY

Danelle,  Thank God your son is getting help early on in this.  My heart goes out to you and your family.  I know I would give my life for any of my children and take on their illnesses myself if I could.  I will keep your family in my prayers.  Linda

Danelle

<{POST_SNAPBACK}>

[Guest Mary from OH]

OHHHHHHHH!!!!!

{{{{{Danelle}}}}}}}-

I'll give you a buzz!! I have to go get Marissa!! I'll try to write more later!!!

Love you!! YOU are a fighter!! You will be ok!! I promise!!

[Sue]

Dear Danelle

I am so sorry for your sons diagnosis. I am sure you are heartbroken by this, I too fear my daughter has NCS or POTS she is always tired, never sleeps, very pale, etc. But naturally does not want to be tested. I already have her on gatorade and high salt, seems to help her. Keeping both of you in my prayers

Sue

[danelle]

Thanks for all of your kind responses. Sounds like others are having issues with their children as well. I can't talk long tonight but will fill everyone in much better either tomorrow or Monday(depends on if I can get the privacy tomorrow). I am sorry I haven't respondeds sooner-we got the dx on Wed, then my husband had a business meeting out of town and Derrick and I loaded up and went with him. We are just now getting back. I am exhausted-gonna shower and hit the sack.

We are all hanging in there but barely. I am at a numb state right now. I promise to fill you in more in the next day or so.

Thanks for all the prayers and responses.

MARY-thanks for the sweet message on the answering machine-I just got it. If you get a chance, try and call me tomorrow or sometime this week. I am gonna go shower and crash for now.

Love to you all,

Danelle

[danish]

Hi Danelle,

I'm very sorry to hear about your son's dx. I'm almost 16, so I can attest to how difficult it is to have POTS during high school. I do think that having an early diagnosis, and a mom who can empathize will make things much easier for him. I do want to suggest that your son join DYNA (http://www.dynakids.org/). It's helped me out so much to talk to other people my age going through the same thing.

Anyway, hang in there! I'll be thinking about you.

~Sarina