Quetions About Son's New Ncs Diagnosis

[jhoroho]

My 12 year old son was just diagnosed with Neurocardiogenic syncope. The doctor who did his tilt table was very concerned due to an extremely prolonged asystole time and he stated several times that his T-wave inverted. He immediately put him on propranolol and mentioned that a pacemaker my be an option. I did not expect this. The test was done because he has been presyncopal and passed out 2x in the last year. Is this something to be very concerned about? Could this be a life-threatening issue?

[Noreen]

It is early days to worry about a pacemaker. My cardiologist mentioned a pacemaker 9 years ago when I was first dx'd and not since.

Increase his fluids and salt and check out the Dinet page on NCS-

http://www.dinet.org/NCS/ncs.htm

Remember to breathe and take one step at a time.

noreen

[cmruls]

That's interesting. I don't understand the propranol?

[jhoroho]

He has increased his salt intake, takes 20-30 minute to get up out of bed while drinking gatorade, and is almost constantly drinking gatorade. I guess my question is how serious is this? He was in asystole for a long enough time that it worried the doctor and both RNs doing the study. The doctor even said this is one of the worst studies he has seen, and never one that bad in someone his age. Is this something that could possibly quite serious in regards to morbidity, or more of a lifestyle modification?

[Noreen]

You should call the cardiologist's office to discuss your concerns. A diagnosis of NCS does not mean he is in imminent danger of dying. It sounds like there are underlying cardiac issues to be addressed by the doctor.

If the doctor can't or won't answer your questions, you are then faced with whether you want to continue with this provider or whether your son's health would be better served by an expert.

Only time will tell with a lot of this although I know you want a magic wand cure. The docs don't have one - believe me, I have asked!

[juliegee]

I also don't understand the thinking behind the propranol either. Isn't that usually used for high blood pressure? Is your son hypertensive? I'm guessing NOT. He's probably HYPO-tensive. My son has the same condition, although Johns Hopkins calls it NMH. My son has severe bradycardia- sounds like your son does too? The long periods of asystole in dysautonomia are usually caused by severe hypovolemia (low blood volume.) He seems to be on the right track with the gatorade & salt- both will up his blood volume, BUT I suspect that florinef would also be very helpful. It helps the body retain the salt and water better- more effectively raising the blood volume.

Is your son seeing an ANS specialist? Most cardiologists don't get dysautonomia. Getting a lifestyle and med regimen that works takes trial and error. Find a brochure below that we received from Johns Hopkins when my son was DXed. It is chock-full of great info. Every time I read it, I learn more. There is a med section that describes all of the meds used in dysautonomia, how they work, and HOW to take them. Scroll down to florinef to learn more & consider asking your son's doc if this might not be helpful. It totally turned my son around. He went from bedridden (missing a year of school) to "normalish "

http://www.cfids.org/webinar/cfsinfo2010.pdf

[jhoroho]

I think the propranolol is to keep his heart rate down. Resting HR prior to the tilt was 53. Within 3 minutes of raising the head up, his HR went to the 90's, then dropped and went into asystole. I think his theory is if the heart rate does not go up, it will not drop. The test was just done last Tuesday. He has a follow-up with the same cardiologist this Friday and a new appointment with a pediatric cardiologist June 1. Unfortunately, I work for a hospital. Because of that, the network on their insurance is somewhat limited. I think they want us to utilize them as much as possible. It does cover several doctors in Indiana. However, it does not cover any of the specialists in the dysautonomia area. They are all out of state. Thanks for all the information.

[juliegee]

But his BP is normal or low, right? I worry that he is on the wrong med because his doc doesn't fully understand the condition. PLEASE run the florinef idea by the doc. If blood volume is boosted, the HR doesn't have to raise as there is enough to maintain BP Trying to slow an already slow HR could actually be worsening the condition.

Maybe other members here will have a recommendation for a good pediatric ANS doc close to you. I have an adult brother in IN, with the same condition. I can check if his doc sees kids. He might have gone to Chicago- can't remember???

[jhoroho]

Thanks. Any help would be great. Does anyone know much about "brain fog" or lack of attention? He was diagnosed with ADHD with the majority of it being attention deficit. Could this be linked to the NCS?

[juliegee]

Yes, there appears to be a connection between the two. I wondered about this with your son. My son was mistakenly DXed with ADD (based on very slow speed processing not true attention tests, like the TOVA) before he was Dxed with NMH...and ultimately chronic fatigue syndrome. There is much overlap between the 3 conditions. Hard to tell if the brain fog caused by inadequate blood supply to the brain causes this or if there is another mechanism as well. The 3 meds that have proved most helpful for my son are: florinef, lexapro, concerta. Once he began the concerta, he said. "Mom, I can think so much better!" I suspect a stimulant med will help your son's ANS and attention issues. Is he already taking one? If you consider adding that, remember it is important to start one med at a time, to gage results and side effects before adding a 2nd med. I would guess that florinef is MOST important right now. See what your son's doctor has to say. I've E-Mailed my bother for info on his doc. I'll PM it to you once I get it.

It is so hard to see your child suffer. I'm guessing that your son is very tired and is having a very hard time in school if he is able to attend- that was my so too. I pray you see some improvement soon.

Julie

[Sarah4444]

I think Julie is right, that brain fog is at least in part caused by chronic reduction in oxygen getting to the brain. I noticed severe difficulties with attention and concentration (and memory) when I was most sick, and had I been an adolescent would probably have been looked at for ADD.

The more success I have treating POTS over time, the less brain fog I have. Things that seem to have specifically helped me with this symptom are avoiding gluten, taking salt capsules, gently/slowly increasing exercise, midodrine, and getting some sleep after starting doxepin.

Also, I can feel when my body can no longer get blood to my head - I just start to feel odd, then tired, then dizzy and unwell...if I let it go too long before lying down, it takes longer to recover/bounce back once I can lie down. It's hard to explain, but I need to carefully balance lying down when I feel this, and not lying down too much.

[jhoroho]

Thank you so much. The more I've been reading on this subject, the more things are connecting. He was dx with ADHD and migraines both about 3-4 years ago. He has had some nausea and abdominal issues 2 years ago and was actually tested for celiac. His abdominal issues have seemed to clear up. It seems these all could be related. He is not currently on any ADHD meds. He had been on Strattera, but one of the possible side affects is hypotension, so we took him off of it over 8 months ago (thinking this is what was causing his problems). He also has mild asthma. The attention portion is the biggest issue he has had at school.

[kclynn]

My son started Florinef and Midodrine end of March. He had had SEVERE brain fog and cognitive issues and everything is so much better now.

Also, my son was DX with mild ADD several yrs ago and had migraines, dizziness, momentary black outs and progressive pots symptoms in 09 following several viruses and a bronchial infection. Prior to that he had episodic fatigue and flushing and exhaustion none of which would last very long then he would recover.

When he was a baby he had lots of croup which is supposed to subside when they are about 4 but he had them till 7 after which they said he had viral induced asthma.... You wonder where the beginning was sometimes?

[juliegee]

Mack too- we were told he had asthma & he was put on steroids multiple times...but he doesn't. If I look carefully, the signs were there from day one. He was our only, which made us VERY slow to recognize problems

[Kyler]

My son was dx with POTS at age 12. I feel your confusion and pain. It was a long process of learning and acceptance and it still ***** when his syptoms change every few months. Being a medic and understanding HR and his asystole that you mentioned I am VERY shocked that they put him on a beta blocker. "Someone with a HR of 53 should never be given a BB" - this comes from the lips of my husband's doctor - my husband has high BP but his resting sitting HR is in the the upper 40's to low 50's so they gave him a calcium channel blocker that will not affect his HR nearly as much. If your son was on my ambulance with a resting HR less than 100 and I gave him propanolol I would get fired. My son takes a BB because his HR goes up to 200 when he stands. His lowest HR was 43 for a very brief time on a holter monitor while he was sleeping but never that low when he was awake. Another thing to keep in mind - if his BP is dropping upon upright posture his body will raise his HR to compensate and to a certain extent this is good and can prevent him from passing out - if we lower Kyler's standing HR below 130 he gets blurry vision and dizziness - with the new addition of florinef he can tolerate a standing HR of 110 but any lower and his body can not fix the lack of blood flow. Upright HR of 90 is not very high - that's close to what mine is and I don't have POTS.

About the asystole - from my first hand experiebnce (12 years on an ambulance) the only people that typically stay in asystole are the ones that have had a cardiac arrest with progressive heart muscle death. There is a drug that we give that actually induces asystole in order to stop a bad rhythm called SVT - it lasts anywhere from about 1-20 seconds and it is scary every time but they always come out of it.

Kyler was dx with ADHD at age 7 and in hindsight that is when his symptoms really started and the adderall really helps with the brain fog. Concerta put his HR at 220 which is how we found out that he had POTS but Adderall does not affect his HR at all. It also helps with low BP by constricting his blood vessel - he takes a 10mg time release in the am and one in the afternoon. The best decision that I made through this whole thing was to get him on a 504 plan and then we progressed to classifying him as special education simply to make it easier to get him what he needs - he does partial homebound, goes to school from 1100 - 1:40 pm and he sits in a Ninja gaming chair in class which allows him more blood flow to his brain and he has been on the honor roll all year as opposed to nearly failing everything for the last 2 years. The school provides his own air conditioned bus and anything else he needs - I feel that my tax dollars are there to make sure that my child is successful in school. You can find info about this on the dyna kids website. PM me if need more info on this.

Good luck and we will be praying for you and your son.

[juliegee]

Ditto on the 504 plan- so necessary and starts a paper trail that he will need for accomodations, like extra time, ability to drink water, eat a snack, test over multiple days for his PSAT, SAT and ACT.

ALL of this lays the ground work for accomodations in high school & college. Starts with good psycho-educational testing AND good medical records shared with the school. If you think his illness is causing cognitive issues, the school should provide the psych-educational testing for free.

Hard to think about this when his illness is taking center stage, but it is all so intertwined. Much is expected of our children while they are incredibly ill- with an invisible chronic illness... Our job is to advocate for them until they can do it for themselves.

Your son is in my prayers-

Julie