Son Diagnosed With Ncs

[maryfw]

I took my son today to a cardiologist for his first time today and he was diagnosed with NCS like I have. My son is 17 so they will not/could not get a TTT on him in our town. But he has all the classic symptoms and since I have it, the doc just agreed to the diagnosis. My son has high bp and is on Lisinopril for that so the doctor is not recommending any treatment other than Lots of Water and Gatorade...No Caffeine, etc, etc. Also the cardiologist did and ekg and is ordering an echo but really does not want to see him again since it is not a cardiology problem. I guess in the future I could ask my primary doc to try him on a Beta Blocker and that might take care of both the high bp and the NCS.

Being a normal 17 year old I hope he will listen and get off the caffeine but at this age there is not much else I can do because he goes to school and has a part time job after school. Dont think I would have actually listened at his age either. I was diagnosed this year and have given up all caffeine (except chocolate and I will go to the grave eating that!!) and drink gatorade and water ALL DAY long. So I guess my son got my NCS and Bad Eye Sight but he also got my good looks.............that has to count for something. Have a good day all.

mary

[Mrs. Burschman]

Hey, good looks are fun!

Sorry your son has it, too. Hopefully it won't affect his life too much.

And don't feel guilty! I don't know if you're prone to that, but I know that my mom feels bad that a lot of my problems seem to be inherited. As if she wanted to pass it on!

Thanks for the update. And good luck getting a teenager to listen!

amy

[juliegee]

Hi Mary,

My son has NCS too. His docs at Johns Hopkins call it NMH (neurally mediated hypotension), but they use the term interchangably with NCS. Mack's blood pressure basically drops to almost nothing several times throughout the day. Unlike your son, Mack (now 14 y/o) has low or normal BP and florinef (to boost blood volume) has been a really helpful treatment.

If you can, explain how NCS is present with high BP. I've always thought NCS/NMH is a result of low blood volume and the treatment was fluid and salt to boost it to stabilize the BP.

BTW, I think a thorough cardiology work-up is a very important part of managing NCS. Mack's cardiologist ruled out electrical rhythm problems, and any functional problems with an echocardiogram. (This was especially important to me as my little brother, at 28, had his aorta spontaneously rupture.) Mack also has severe bradycardia at times- HR in the 30's. We definately needed to get everything checked out. NCS, after all is a miscommunication between the barin and heart. I think it's a good idea to get a good picture of each :-)

How badly is your son affected? Is he able to attend school? What are his primary symptoms now? My son was very badly affected, even unable to eat food for a almost a year. He missed attending most of 7th grade. We are so fortunate that he is much better with treatment and functions almost normally (with meds.) He is just more tired than his friends.

I'm sorry your felkliow's got the DX, but it must be a bit of a relief to finally have a cause for how he was feeling. Don't feel guilty. Passing this condition along certainly wasn't a choice you made.

Hugs-

Julie

[maryfw]

He is a fairly healthy kid all in all. He has had Mono this year and then the high bp and the NCS just makes him dizzy and he is like me he has only completely passed out once. We just come REALLY close. No I dont fell guilty. I would if he were much worse. He does get sick after almost every meal and has lost weight. They are sending him to a gastro doctor but that is probably a NCS thing too. I may want my primary card doc to try him on a beta blocker to help his bp and the ncs.

As for how does High BP work with NCS ... I have NO CLUE. Maybe Doctor Guest could help us understand that one but a few months ago I mentioned here on the forum that my son has high BP even though he is 6-2 and weighs 150 and several people responded that it could be NCS Or POTS...........Since no TTT was done I guess it could be POTS as easily as NCS. I am still fairly newly diagnosed myself so I dont know.

I go for a 1st followup with my cardiologist next week myself so maybe my doc can answer some more questions for me.

Thanks and we are both taking it in stride. Again, I count my blessings because it could be much worse...earlier this year they thought he had Hepatitis and that gave us a big scare

mary

[juliegee]

Mary,

I almost feel like we are IMing! I'm glad your son is basically healthy despite the NCS. Re. your son's eating problems, is he nauseous after he eats? That's what happened to my son. After lots of awful testing at Johns Hopkins, his docs determined that he was suffering from an autonomic neuropathy of his GI tract. The food wasn't moving smoothly through the small intestine. Mack takes prevacid or Nexium and a little bit of liquid eyrthromycin as a GI prokinetic to move food along better. It really helps. Many folks here have gastroparesis or small bowel dysmotility (both disruptions of the GI tract caused by autonomic neuropathies.) GI docs are very slow to figure this out, especially in teens. But, it's pretty classic if your son has NCS or POTS. I just wanted to give you a "heads-up" before you see the GI doctor.

A low fat, low fiber diet might be helpful. Things like rice, noodles, white bread, mushy vegs, well-chewed chicken and turkey were all Mack could tolerate for a long time. It might be worth a dairy-free trial to see if that helps. (This is a first step tretment for many with NCS and GI issues.) If your insurance will pay for it, zofran is a miracle for the nausea. It offered Mack decent relief & didn't make him sleepy.

All the best-

Julie

[ajw4790]

I wish him the best! I hope that the treatment works!