Negative Tilt Results For My Son

[Be Still]

Back from the tilt with one revoltingly exhausted mom, a dad who was glad to have a day off from work (though no pay!!!), and a teen eating everything in sight, making up for lost time.

My son does not have POTS or NCS.

So, what does he have? I thought finding an answer for me would find an answer for him!

He passed the tilt with flying colors. That?s good! My kid is cool with it all, he is not in the same ball park with me and my sx, we knew that.

Why is he so POTSy, though??

As a mom, I worry about the anxiety, fatigue, brain fog and fainting (fortunately they?re aren?t overwhelming.) I still have this nagging that something is not right. His BP and HR on the tilt were normal (they aren?t at home.) The only thing he noticed/complained about on the tilt was the heaviness of the blood pooling in his arms and legs.

Thank you ladies, for your good thoughts, encouragement and sympathy. I appreciated it all.

This triggers my trauma of life-long having tests that came back okay, yet I felt like road kill. I was hoping for answers and I came home with more questions. I?m fretting over how much this cost! You can justify it if you get answers, I tend to beat on myself for spending the $ if tests come back okay. Can anyone help me with this? With my husband missing a day?s pay and all, it makes me want to crawl into a hole . . .

medical bills

[Roselover]

Be Still,

I'm sorry you didn't get answers - I think we all understand that feeling.

And I can really relate the the medical bills and paying for expensive tests that tell you nothing! I just had the same thing $500 to tell me everythinng is normal... ugh.

Hope you all can support each other and get through this together. Wishing you a peaceful day.

~Melanie

[kmpower]

Can you be happy and upset about a test at the same time? Glad that was negative for reasons other than financial. Isn't no news good news sometimes? Let's do a cup half full thing here.

Before POTS was on the map (yeah, I know, it is just a teensy blip even now), when a teenager had symptoms like that, the considerations were hormones, allergies, blood sugar, school or girl stress, etc. If such a thing were possible, could you get his diet perfect, or at least eliminate allergies? Allergies, if not symptoms, run in families according to Your Family Tree Connection, a book whose author I forget. Have him at least eliminate what you, Dad, and/or other blood relatives are allergic to.

But the money stuff, I am sorry it is such a double bummer. Stay in the hole and regroup if that is what it takes, but we are on your side when you pop out!

OLL

[dianaD]

I'm so sorry you don't have any answers yet.

Does your son have headaches, too? Have you considered Chiari I malformation (I think that is how it is spelled...)?

What does your doctor want to check next?

[Ernie]

Hi,

If is vitals are not normal at home it could be that the stress of the test helped him perform better. He could also be having a good day.

[morgan617]

Ernie's right. The problem with ttt's is that maybe you are just having a better day. And the fact that he didn't faint doesn't mean he doesn't have it. Not that I want him to have it. But i always go by my gut with my kids and it's always been dead on. Maybe you could keep a journal and see if he has any triggers for it and show it to the doctor.

I don't have tests anymore for that very reason. They are normal or borderline or off, but not off enough. No matter how off they are....hmmm

I love your comment about feeling road kill. I have to remember that one.....morgan

[MomtoGiuliana]

So sorry for such a difficult day. Of course you want answers. Unfortunately with unusual symptoms it can take awhile to pinpoint the problem. Does your son have significant enough symptoms that they interfere with his daily life at all? If so, and even if not, does his doctor have a plan for additional tests?

I completely agree with the above--the TTT, while considered the gold standard for documenting POTS, is not foolproof. I suspect a good many of us would "pass" it on a good day. I agree that keeping a diary of his symptoms may be helpful.

It sounds like you are looking for answers in the right places, so I don't think you have any reason to feel guilty for spending money on needed tests. BTW, who reviewed the TTT results and determined he passed with "flying colors"? I think doctors experienced with POTS do also take symptoms into account during the TTT, not just bp and hr.

Take care,

Katherine

[Gena]

Although my tilt test was not positive, my cardio at Mayo and another specialist both confirmed I have POTs/dysautonomia due to my symptoms and the BP and HR changes I logged using my monitor at home. So it's possible that your son may have it. I would go with the above suggestions and document HR and BP at home, along with symptoms and triggers. I know you don't wish this upon him, but at the same time you'd probably feel relieved to have a dx of some sort so you knew what you were dealing with!

Best wishes,

Gena

[Be Still]

Thank you, everyone, for your kind input. I'm grateful for all of your help.

I talked to my PCP and told him the door was still cracked open for me regarding POTS for my son. I have confidence in the test and the results, though he was having a good day. I told my doctor that he's too much like me, only with the volume turned down, for this to be totally out of the question. His blood work is good, so we've ruled out other stuff (and he doesn't have headaches.) If my son has more troubling sx, I still think this is the direction to go. For now, we've probably done everything we could.

Regarding the expense, I had to do it. It made sense to do it (the results don't make sense.) Somehow, it'll all work out.

I agree, mom's intuition is something to take seriously.

Thanks, again. You all helped me to feel better.

[persephone]

False negatives can happen through stress- stress raises the blood pressure!

I have had false negatives for this reason.

The last test I had was with a really nice Dr and I told him about how I was worried people would think stuff was in my head. He talked to me and was really kind- very gentle, told me not to be frightened, to relax because he knew from seeing me try to stand up and leave his office that something was very wrong.

Once he said all that, I was able to relax, and for the first time in twelve years, we were able to see what happens to my blood pressure properly when I faint. It was the first positive tilt I'd had without GTN. It was quite frightening actually, because my bp flatlined. But it was good to KNOW.

The point I'm trying to make is that stress definitely can create false negatives, so on't stop until you are satisfied. Oh, and my parents paid ?800 for a tilt test in London that gave a false negative. I was distraught, I felt so guilty.

The key is to put it down to experience.

I hope you get answers. But getting those answers is not an end in itself. POTS has no end- as you yourself surely know. I hope therefore that you get positive answers that are constructive and helpful.

[OCsunshine]

How long was he on the tilt table?

He said that he felt blood pooling into his arms and feet... did they turn purple? Were his feet exposed so you (and the docs) could see the skin color?

Just thinking of ideas.... with NMH, my heart rate will usually stay about the same but I'll have the blood pool into my hands and feet and then before you know it I'm very light-headed and my BP bottoms out... that's why I was wondering how long he was vertical.

Also, like others said... maybe he had a good day and that's why he could tolerate it.

It's a tricky illness. I am hoping that he really doesn't have it, though. Maybe it's something much less complicated that the docs will find out soon.

Keep us posted.