Son has DEE-SWAS epilepsy, heart rate spikes & genetic mutation

My 11 years old son consistently has heart rate spikes of 120-130s at resting or sleeping. Tachycardia they say.
But initial testing shows nothing.
He complains of being extraordinarily hot during events and he is often agitated or maybe anxious. They can last for 20-30 mins and take a full hour before he is truly back to normal with heart rate around 80-90. Thoughts?

I hesitate to suggest anything in case it puts you in a tailspin. I'm nothing remotely like a health care professional, so please take what I say with some caution: it might be a tumor on his adrenal gland, or he has an endocrine problem with his hypothalamus or pituitary gland...not sure which or if. Unless he has an electrically disordered heart, and that can be determined by a mapping procedure (catheter through his groin up into the heart and a probe looks for spurious voltages where they shouldn't be), he is probably responding to adrenalin rushes, perhaps due to vivid dreams, or for some other reason.

An electrophysiologist is a heart rhythm expert who can map out his electrical system for malfunction. They can 'challenge' the heart using several drugs, from caffeine to epinephrine, from isoproterenol to adenosine, and make his heart beat quickly and become stressed. They'll find the place where the disorder lies. But if they insist that he's okay electrically, then there is an endocrine disorder or a tumor...that's all I can think of.

Keep pressing the various experts for a diagnostic that might show something. And, I wish you hurried success.

They did multiple ekgs , echo’s and axio monitoring and found nothing thus far.

Symptoms are tachycardia while just sitting or sleeping, feeling hot, sweat, enlarged pupils and irritable due to feeling hot and extreme fatigue and he drops on the ground at times.

Had a brother who died age 23 with dilated hyper trophic cardiomyopathy in his sleep.

He does have four genetic mutations that they know absolutely nothing about and he has history of seizures and encephalopathy.

Have they mentioned anything about inappropriate sinus tachycardia . Have they did a tested his cortisone. Have they tested for adrenal insernificancy. I might have something wrong with his automatic nervous system. I'm not a doctor I'm not a nurse but it sounds like you have something wrong with his automatic nervous system. Ask the doctor is it inappropriate sinus tachycardia as it is adrenal glands like adrenal insernificancy or is it. Is there something wrong with his automatic nervous system. He could be getting dehydrated while he's been sleeping. I try to cut out caffeine before he goes to bed. Check his vitamin D12. Maybe check his sugar levels. 🧐🤔🙏🙏🤣 Hang in there hope things get better. 🤨

Have they ever tested him for his disease that can be a genetic disorder. A blood clotting disorder.

He does have an endocrinologist who was trying to figure out why he had gynecomastia. But I don’t think they checked out cortisol or adrenal gland insufficiency stuff.

He doesn’t drink sodas or caffeinated stuff such as coffee. Sugar levels are fine now that he’s not getting iv steroids

His Vit d levels are low normal.

The cardiologist never really said much other than heart issues look ok but he want to consult with cardiogenetics to see but he never told me what cardiogenetics said. So I guess that’s why I’m heading to Mayo as ucsf apparently —nobody knows. They tell me over and over again when he’s hospitalized almost monthly that the doctors just don’t know about his genetic issues, it’s rare. The types and locations. He is the only one, they say.

I don't know if you're going to a children's hospital or is this a children's hospital but they should have a genetic testing at the children's hospital or how far you're from a children's hospital. I had a friend and I had a friend with a daughter that used to get seizures and her sleep her heart rate would go really fast when she didn't get enough of sleep or should get really hot and sweaty and get all the symptoms your son I'm sorry it must be very my thoughts and prayers go out to you and your son.would get today caught it at a children's hospital with a child and his neurologist. Go take her about 45 minutes to get out of it. I hope there's a children's hospital they would send you to a specialty like that genetics testing 🙏🙏doctor. Have they ever mentioned super ventricle tachycardia to you.

Sorry another thought has come to my mind you should say does my kid have white Parkinson white wolf syndromewolf syndrome. You should ask the cardiologist to send you to a EP doctor.

Ucsf has a good pediatrics program I believe … all his specialists are there but his genetic mutations are so rare that they don’t know much they said.

So maybe Mayo may or may not know more but all I can say we at least tried when we go out to Rochester in June.

Thats definitely a differential - seizures