Shock From Autonomic Dysfunction?

[sadiebean]

Hi,

My son, who is 4.5yrs and medically complicated, trach/vent, and has a serious hind brain malformation resulting autonomic dysfunction that is largely under control using the beta blocker atenolol.

This past Wednesday night/Thursday morning we had to rush him to the ER, as he was apparently in shock - purple hands and feet, low blood pressure, dialated pupils, unresponsive to us tho responsive to noise and light, fever.

He had been doing poorly for the last couple of days, but we'd thought he had a mild respiratory virus. But as Wednesday progress, he got worse and worse until finally his temp got very high and his affect was just not right.

The ER got it under control with bolused fluids and started antibiotics, assuming massive sepsis. But so far all the cultures are still negative. But the docs are still convinced he's got an infection because of the severity of his symptoms.

So my question is: *** Does anyone know if an autonomic crisis can look like or even be the same as shock? Including dangerously low blood pressure? (systolic of 60-70) ***

I am very used to docs assuming infection when they see his autonomic symptoms. So I am trying to trust them that this was bacterial based. But since we have no sign of infection, and since he was much better 12 hours later, it seems to me that massive infection is very unlikely.

He had several triggers in the day or two leading up to the event including being very, very tired; constipated; then treated with a prune juice/magnesium to help clear it which agitates his GI system; suspected respiratory virus; and slightly reduced fluid intake.

We also gave him his beta blocker as usual on Wednesday, when now I know that he could have had a lower BP already, meaning the meds would have lowered it even more, possibly dangerously.

Thanks for any input.

[Katybug]

I do not know the answers to your questions but want you to know I will be thinoing of your son and family.

[E Soskis]

What you describe sounds like septic shock - shock from infection: a form of distributive shock.. He is at great risk due to trach and vent. Autonomic dysfunction or dysautonomia can also produce a type of distributive shock. The causes are different. Sepsis is from infection that has spread to the entire body - via the blood stream. Autonomic failure/dysfunction causes the symptoms of distributive shock because of floppy blood vessels and poor vascular compliance - blood pools in large blood vessels and does not adequately provide enough circulation to the brain and other vital organs.

When you son presents to the ER with the type of symptoms you describe, they must treat for sepsis as it is the most likely culprit and has a high rate of fatality if untreated. Sometimes it spreads so quickly, there is no time to treat before all organs shut down and death ensues. A good discussion to have with your son's primary physician would be how likely he is to experience shock from dysautonomia vs shock from infection -

Beta blockers don't really lower BP in patients with autonomic failure - it actually has a paradoxical effect - it will help strengthen the heart beat which helps keep his BP up. It also helps keep the heart rate at a more normal level in autonomic failure -

You have quite a challenge to care for your son day in and day out. I wish you all the best and encourage you to study and learn as much as you can about dysautonomia. Blessings to you and your son.

[Tachy Phlegming]

I've seen this happen. What I saw was that once it was characterized as sepsis, they don't change the treatment protocol nor the reason for admission to the hospital even when the cultures come back clear. If you have some other treatment you use for exacerbation of autonomic symptoms, they generally still will not want to treat for anything except infection.

[gackedo]

I'm sure he got antibiotics very quickly when he arrived in the ER and he got better in 12 hours. That makes me wonder if it is not some sort of hidden infection.

[sadiebean]

Thanks very much for the responses.

I am very grateful they treated him for sepsis and take no issue with it, especially as he had a fungal cellulitis at his g-tube site the week before which would give an entry point (though again no sign of bacteral infection, 36-hours of antibiotics, all cultures clear). So it could very, very well have been infection. And we'll be continuing the antibiotics at home for a full course.

But we've had breaks in the skin and tracheitises and UTIs, and he has handled them better than most I know -- under his obvious congenital issues is a healthy boy, with a strong, proven immune system.

And, I have nobody with whom I can discuss how likely shock from dysautonomia vs infection is - nobody. And I looked high and low for a long time. I raised my concerns in the ICU yesterday about not being able to distinguish between sepsis vs. autonomic, and not even a suggestion that there is someone I can speak to (And this is at a major #1 ranked, teaching children's hospital.)

I need to understand what *could* happen JUST from autonomic dysfunction, or else everytime his symptoms get a *little* more pronounced, I'm going to be concerned I should take him to the ER (or even obligated as we have homecare nursing here.)

Autonomic dysfunction or dysautonomia can also produce a type of distributive shock. ... Autonomic failure/dysfunction causes the symptoms of distributive shock because of floppy blood vessels and poor vascular compliance - blood pools in large blood vessels and does not adequately provide enough circulation to the brain and other vital organs.

Does distributive shock from sepsis and from autonomic failure look the same? Would you have low BP if the cause were autonomic?

[Katybug]

I know this doesn't help for this emergent issue, but there is a pediatric dysautonomia specialist at Johns Hopkins named Dr. Peter Rowe. He has some videos on YouTube. He seems well respected by those that have taken there children to him. He might be worth trying to consult with or maybe even if the doctors are willing to call him to consult? Just a thought. ..

[E Soskis]

Yes - both shocks result in low blood pressure - I don't know the specifics of your son and his medical case but, for me, autonomic dysfunction waxes and wanes - it should get better with the "usual" treatment and fairly quickly. Sepsis steadily worsens and does not get better on its own. I have had sepsis and the feeling is not at all like dysautonomia and autonomic dysfunction. I went down quick and kept going down fast - I recognized the need for immediate medical intervention and was admitted on IV antibiotics. When I "flare" with dysautonomia, I have weak periods and periods of low blood pressure but, it usually responds within a few hours to fluids, midodrine, and rest. Sometimes, it lasts a few days but, I never feel in danger like I did with sepsis. My physician and I have an agreement: if I am down more than a day with low blood pressure or I need more than a liter of IV fluids, then I must be admitted. You might check with your son's physician and see at what point he/she would want you to bring him in and not try to "hang in there".

[IceLizard]

If I am not mistaken, people treated for sepsis can improve rapidly once the medication is started. They can also deteriorate rapidly if no medicine is given. The high fever suggests infection instead of dysautonomia. People with dysautonomia can run low fevers, but high ones suggests the body is raising the temperature to fight an infection of some kind. High fevers are also sometimes found in Serotonin Syndrome, which is probably unrelated to your case.

Bless you and your boy.