Finally got my oldest son in to see the specialist!

[StayAtHomeMom]

Basic background: I have been diagnosed for 2 years with POTS. Sick for 3 1/2. My oldest son developed weird symptoms about 6 months after me. He was 12 at the time. Different symptoms but similar. When I was testing myself for POTS I used him and my husband to verify that my BP machine was working correctly. He went from 94 sitting to over 140 standing. My hubby's HR moved only a few points. 

I brought him to see the only pediatric cardiologist in my area when he was 13 and she dismissed my data, ignored his symptoms, did a poor man's TTT incorrectly (had himlay for 20 minutes, sit for 5 minutes, then stood and immediately took the reading), and told us he was dehydrated and to drink 5-6 bottles of water a day. Oh and the diagnosis didn't matter. 

Present: my 16 year old son has tachycardia (dependent on position), slight blood pressure changes (based on position), headaches 2-3 times a week, fatigue, chest pain, dizziness, lightheadness, hot flashes, GI issues, and anxiety issues. He may have more that I just can't think of right now. 

Last summer he had an incident where he went upstairs for something that should have taken 5 minutes. Came back down 20 minutes later. When we asked what took so long he responded I don't know. I woke up on the floor. No one witnessed the event so we have no idea what happened. 

Back in November he had a case of vertigo that last about a day and a half. 

I have been trying to get him in to see my specialist since October. Finally got him in yesterday. The specialist believes I am right, he has autonomic dysfunction. My son had basic blood labs drawn yesterday and next week he goes in for autonomic testing, EEG, and X-rays. 

On the one hand I am glad I wasn't crazy, on the other I know how bad this can be and I am scared for my son. I hope he grows out of it, but I fear he won't considering it has been getting progressively worse. That is why I have been pushing to get him diagnosed. I hope to get some as needed meds for him just to help him on those bad days. 

And his diagnosis brings up the question: what is the underlying cause. We both apparently have whatever is causing our POTS. 

[Pistol]

Hello @StayAtHomeMom - POTS runs in my family, mother/ sisters/ nieces all have it. We all have hyperadrenergic POTS with hypertension but all at various severities. I believe that our type of POTS is - apparently - genetic. Regarding underlying cause: in many cases it cannot be determined. The most important thing is that you find treatment and that is usually by trial-and-error. --- I have heard that the younger we are when POTS starts the better the outcome - although that is probably not always the case. I personally know several people who developed POTS at a young age and ended up with almost complete recovery. I hope this is the case with your son. Best wishes!!!

[StayAtHomeMom]

In my research it seems that HyperPOTS seems to be genetic (which to me would be the underlying cause) but I have had 2 urine catacholmine tests done both negative for hyperPOTS. Plus my BP is steady and normal. My son's will drop a bit sometimes but not all the time. I was hoping it had something to do with his growth spurts. When he was 12 he grew 4 inches in 6 months, but he hasn't grown in over a year and his symptoms are getting worse. 

Looking back to my teenage years a few of my symptoms started when I was 12. And steadily added throughout my teen age years. I had both my boys before I was 20 so maybe that helped hold the worst of it off. Fatigue and unrefreshing sleep have always been a big problem for me and it seems that way for my oldest as well. My dad used to joke about the fact I went to bed at 7pm because I needed my 12 hours of sleep. (It was usually 8 pm but the 12 hours is pretty accurate). 

I am thinking along the lines that if we both have it and it isn't hyperPOTS then we have some sort of genetic abnormality that is causing it. No one else in my family has POTS. The closest thing is my mom's side has a lot of autoimmune. But my ANA keeps coming back negative and we are waiting on the results from my son's blood draw to find out. 

[Guest ScottS]

It's good that you're a caring and loving mom. I realize saying that might seem trite but you're making a world of difference.

 

[StayAtHomeMom]

On 2/15/2019 at 8:58 PM, ScottS said:

It's good that you're a caring and loving mom. I realize saying that might seem trite but you're making a world of difference.

 

Thank you for that. I have a friend who has pseudotumor cerebri. She seen the early signs with her daughter and brought her in. Turns out she got her diagnosis at 13. Instead of late 20s liker her mom. It is hard watching your children have what you have. I am glad I was right, but also sad that I was right. We will see how bad it is coming up this week.