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Nervous about son's cardio visit


melly4
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Hi, everyone. I don't know why I'm so nervous about my son's cardiology appt. tomorrow, but I am. I have every reason in the world to be thankful that we got him in so soon and that his pediatric group (for the most part) was really concerned about him and thought he had "orthostatic intolerance" of some kind. Duh!! I guess I'm still in shell-shock over the really poor care (or lack, thereof) he got from the peds cardio back in SC. Prior to any kind of testing, he tried to blow Dillon's symptoms off as being psychiatric. Yeah, right. Then, of course, the results of the month-long event monitor came back and told a different story. By then, we had moved to GA.

I so want him to feel better and be able to be involved in his sport again. The peds docs have given him a "nay" on any strenuous activity until he sees the cardio guy, and wisely so. He's had a lot of chest pain, and his BP really scares me the way it goes up and down. And, of course, he's got the tachy, syncope, and bowel issues like I have.

I want to help him, but I'm afraid that we both will end up being defensive the moment we walk in the door of the dr's office in the morning. PTSD bad doc experience, I guess!! :lol: I've promised myself to be calm, let Dillon talk, tell the doc our story, and then patiently listen for whatever comes. But if we don't get treated right, my red hair takes over and bad things fly out of my mouth!! :lol:

Thanks for letting me express my paranoia of some doctors. They're not all like that, but as Forrest Gump's mother says,"Life is like a box of chocolates: You never know what you're going to get." Same with doctors!! I need to be reminded of how many doctors are out there that truly do care and leave no stone unturned until they can help their patients. I hope we get one of those tomorrow.

Melly

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I need to be reminded of how many doctors are out there that truly do care and leave no stone unturned until they can help their patients.  I hope we get one of those tomorrow.

Melly

I hope so too melly. I have to remind myself also that there are doctors out there who really care. But best of luck tomorrow. Please let us know how it goes :lol: .

- Lauren

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Guest Julia59

Melly,

Good luck tomorrow----I hope the appointment for your son goes well with the cardiologist. I know exactly how you feel. I have been exposed to so many dismissive doctors---i'm always nervous before going to a new Doctor.

I'll be going to see a new neurosurgeon on the 24th at the Cleveland Clinic (I have congenital cervical spine/and lower cervical/cranial instability with compression on the brain stem---along with my POTs and EDS. I've had two that took things very seriously---and said I needed surgery, and two that were dismissive. However, it tells you a lot if the doctor is not well versed in the area of ANS dysfunction-----if they aren't, they are usually dismissive, or if they have good ethics they will refer you to another Doc.

My son is 24 years old now, and often has a high heart rate, but I just let him live his life for now as his symptoms are pretty mild. Just a high heart rate for the most part. He used to party quite a bit when he first moved out (nothing too horrible----but bad enough to scare me)----but he has the WILD out of him for the most part, and it seems to have helped lessen his symptoms. I was never able to tolerate too much of the party scene----I tried, and I always paid for it. People with ANS problems can't handle partying. He was checked by his GP---and I had them do an ECHO to make sure he had no structural problems with his heart. Usually if something is actually wrong with the heart on a youger person----it's usually something with the structure---like bad valves or something.

Now I know being active won't hurt him----so he just does his thing right now. I just keep an eye on things. It doesn't help that he works as a shift manager at STARBUCKS---------doesn't help with the tachycardia----- :lol: He has cut down on his caffiene.

I can see your son is in good hands---as you are trying to get the best of care for him. You will have ups and downs until you find the right care to get his symptoms under control. You are a great Mom to support your son like this.

Good luck tomorrow!

Julie :0)

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I will be thinking good thoughts for your son to have an easy, and fruitful visit. Here's to the possible start of a productive relationship with your new doctors! Nina

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melly -

you're nervous b/c you're a mom:-) nevermind all the other fun with never knowing how a given doc appt will go. but it does sound like things are heading in the right direction in terms of finding answers, being taken seriously, etc. and i like your box o' chocolates analogy for docs. last week i had one AMAZING piece, one decent, & one that was no good at all....but that's another story for another day...i just like the new analogy!

i'll be hoping that tomorrow goes well for both of you.

B) melissa

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Hi, everyone. Thank you so much for all of the support you have given to me and my son. Dillon was diagnosed with POTS this morning. We got a wonderful peds cardiologist this morning, who was well-educated in the field of orthostatic intolerance misery. He didn't put Dillon through more than an EKG, BP reading, and a good listen to him. After he looked at his event monitor results, saw that he was negative for pheo, and listened to us, he made the diagnosis. No TTT or echo was needed. I wish he could be my doc!! The doc gave an outstanding explanation of POTS, and explained that it often seemed to run in families. That's why we are both having problems. He also believed in my theory that this all became worse for me and started in Dillon after our episode of fifth's disease 3 and a half years ago. There was also that magical moment where Dillon demonstrated POTS when he sat up after he had his EKG and nearly fainted!! A med student was present, so maybe there will be a whole new crop of docs that understand all of this.

He has put Dillon on extra fluids and has given us the choice of either salt tablets or loading up his food with salt as a first step. He'll see Dillon in a month. If that doesn't help him, he's being put on Florinef. If anyone has any advice as to whether they prefer salt tablets or salting up food, please let us know.

It feels funny to be happy about your child being diagnosed with an illness, but after years of symptoms and no answers or disbelief, I can't help but feel like the future is brighter for him compared to where we were yesterday. And he can go back to taekwondo!!

Thank you all again for your support and concern. You all are like my internet family!!

Melly

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Guest Julia59

Melly,

Congratulations on a successful visit! Please excuse my rambling on my last post----I was in a fog yesterday..........

It's nice to know your son will have good medical care now to manage his POTS.

Take Care,

Julie :0)

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melly -

i'm so glad that you had such a good visit - for both of you!

re: salt tabs versus loading on the salt, i DEFINITELY prefer adding salt to my food over salt tabs. the salt tabs made my stomach very unhappy. it took me awhile to get used to adding so much salt myself but now i've acquired a taste and don't like my food any other way. i don't think there's any right or wrong answer, but that's my two cents.

:) melissa

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I was thinking about you guys today!!! I'm so happy to hear you had a good visit and good Dr!!!

Just my personal preference but I much prefer adding salt to my diet than taking the salt tabs...for the same reason Sunfish mentioned. I also eat salty snacks (salted pretezels, salted peanuts, tortilla chips warmed up with some salt added on them as they heat up).

Good luck with whatever you try for him!

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Thanks to all for the advice on the salt issue. My son has already requested pretzels and pickles. He's always been a salt-eater. His doc did warn that sometimes one acquires a taste for salty foods, and then one day may not need the extra salt once they have aged significantly and have hypertension. I'll let him eat salt to his heart's content now. I took salt tablets when I was in my late teens briefly due to hypotension post-mono infection, and I do remember they were kind of hard to stomach.

Thanks,

Melly

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