Son's Appointment Tomorrow

[GingerA]

My POTS symptoms started when I was 16 (I'm now 37). Now my son who is 14 is having arrhythmia and extreme fatigue. I am so scared but I don't want to scare him by saying too much. I have an appointment for him tomorrow with a cardiologist but the problem is I don't know what to pray for!

If they don't find anything, is that really good news? I went to docs for 21 years before I finally got a diagnosis. But on the other hand this is a horrible disorder and I do not what my baby to have to go through this!

I'm so confused. . .

[juliegee]

You know that most cardiologists don't have a clue about dysautonomia, right? Surely, that's been your experience too. The fact that you have a DX and your son has symptoms speaks volume...but only if the doc speaks our language

I have found ped cardiologists helpful as far as ruling out scarier stuff, like anatomical or electrical abnormalities- aneurysms and dissections run in the family. I would guess that your son would need to see an EP, rather than a cardiologist to begin TTTing. And, most likely you will have to go to a major teaching hospital for a good DX and treatment plan. (Awful, but true.)

Please let us know how this first foray goes. I pray I am being pessimistic and you will find all of the help you need.

Hugs-

Julie

[kclynn]

Pray for knowledgeable Drs., that they quickly determine what the problem is and are able to come up with a successful treatment plan. He has what he has, the best think is to figure it out and that will help him most. I hope they figure it out!

[GingerA]

You were right Julie! Not only did the doc look at me I was being an over protective mom, when I tried to tell him that I had POTS he said, "You do know that is not a disease. Just some peoples body's make them feel crappy once in a while." MY MOUTH HIT THE FLOOR!!! I would like to see him live like this.

Anyway, he did put a heart monitor on Matt for 24 hours. But my husband was so mad when I called him to tell him what the docs said that he told me to start looking for someone else.

[juliegee]

SORRY, but not surprised . The heart monitor may actually tell him something IF you keep a corresponding journal that record's Matt's activity during the 24 hour period- except that means the cardiologist would have to actually read the journal. Pretty unlikely

Like most of us here, I always had the best luck narrowing down a DX after lots of research. Forums like this are invaluable. Once you think you've figured it out, find a doc who regularly diagnoses that condition. A really good ANS doc for teens, who IS accepting new patients, is Dr. Julian Stewart in NY.

Maybe do your own TTT while he has the monitor. Make sure you record the time you do it. When the doc sees a major run of tachy at that time, make sure he knows your son was STANDING PERFECTLY STILL at the time. If the cardio thinks POTS is his idea; he might help you pursue it locally. Grrrrrrr. You know the difference between a cardio and God? God doesn't think he's a cardiologist

Big hugs, Mama. You will get him DXed. You will get a treatment plan. I pray it will be sooner rather than later. May the truth come to light.

Julie

[GingerA]

Thanks Julie. We will try it.

[bkweavers]

Julie - Love, love, love the joke! The sad thing is that it's so true!

Ginger-Hope you find the right doctor. It makes all the difference in the world. You need someone knowledgeable and who will actually listen to you. Remember that you know your child better than anyone. The doctor(s) only see a person for a short time. My daughter has had her share of bad doctors but thankfully, great ones too. It just took some time to find the right ones.

I hope you find some answers. I know what it's like to have a sick child. The uncertainty and out of control feelings can drive you crazy.

God bless,

Brenda