Help! Undiagnosed Toddler Hypertension

[Mike7877]

Hi,

I am really in need of your help.  If this isn't the right place for this post, or there is a better place for it, please let me know.

Roughly 5 weeks ago, my 2 year 4 month old boy started acting very lethargic and just overall weird.  After four trips to the hospital / clinic, the doctors finally identified that his blood pressure was dangerously high, like 145/100.   They admitted us to the hospital and then ICU and slowly brought his blood pressure back under control with Labetelol and Norvasc.

Since then, we have been searching for a cause (and solution) with no luck, and we're running out of things to look at.   We have, at times, suspected a pheochromocytoma, renal artery stenosis, seizures, heart problems, and more, and, essentially, the doctors are running out of things to look for.   I can provide more detail if desired, but here are some of the things we've done:

- CT Scan, originally concerned about hypertensive encephalitis, normal
- Echocardiogram, normal
- Extensive blood work, everything from basic blood work, to kidney function and kidney hormones, adrenal-related hormones, stress-related hormones, toxicology, all normal except normetanephrines which were slightly elevated (suggestive of Pheochromocytoma, later ruled out via MRI)
- Ultrasound of kidneys and adrenals, normal
- Doppler ultrasound of renal arteries, normal
- MRI of brain and abdomen, normal - renal arteries were normal, no mass on adrenal glands, brain normal

I'm sure there's more that I'm missing, but the doctors have essentially exhausted their testing.  He's on 2.2 milligrams of amlodapine (Norvasc) twice daily and it more-or-less keeps his blood pressure below 110/xx, but we have been having to add in the Labetelol recently on an as-needed basis to keep it below 120/xx.

My wife and I are really scared for him - this whole thing has been just killing us.  Is there anyone put there that has any ideas??

Thank you in advance