Help!! Undiagnosed Toddler Hypertension

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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

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8 Replies

  • Posted

    Mike,

    I can testify that behaviour of the adrenal glands can cause hypertension even when tests suggest ok. Do you know to hand what the Potassium and Sodium number are? Resistant hypertension is always an awkward on to nail. Although based in the UK, I can recommend an American Hypertension Specialist if symptoms persist.

    Paul

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    • Posted

      Hi Cons,

      Thanks for your response. Here are a couple different times we've checked Sodium and Potassium:

      February 17th:

      SODIUM 140 mmol/L Normal: 135 - 144 mmol/L

      POTASSIUM 4.7 mmol/L Normal: 3.5 - 5.5 mmol/L

      March 14th

      SODIUM 141 mmol/L Normal: 135 - 144 mmol/L

      POTASSIUM 4.4 mmol/L Normal: 3.5 - 5.5 mmol/L

      This has prompted me to go back and look through all of his tests, and I thought I would list anything that is showing up as outside of the normal range. Note, these were NOT all taken at the same time:

      BAND NEUTROPHIL % 10 % Normal: 0 - 4 %

      TOTAL CO2 18 mmol/L Normal: 22 - 32 mmol/L

      ALBUMIN 4.5 g/dL Normal: 3.5 - 4.2 g/dL

      RBC COUNT 5.32 10^6/uL Normal: 3.50 - 5.00 10^6/uL

      NRBC # <0.01 10^3/uL Normal: 0.03 - 0.32 10^3/uL

      KETONES UA 1+ Normal: NEG

      UROBILINOGEN UA 0.2 mg/dl Normal: 0 - 1 mg/dl

      TOTAL CO2 17 mmol/L Normal: 22 - 32 mmol/L

      ANION GAP 18 mmol/L Normal: 7 - 15 mmol/L

      ALBUMIN 4.3 g/dL Normal: 3.5 - 4.2 g/dL

      LDH 296 U/L Normal: 120 - 246 U/L

      KETONES UA 20 mg/dL Normal: Negative

      NORMETANEPHRINE 1.06 nmol/L Normal: 0.00 - 0.89 nmol/L - Note: this is one that made us highly suspicious of a Pheochromocytoma, but the MRI came back fine.

      UROBILINOGEN UA 0.2 mg/dl Normal: 0 - 1 mg/dl

      TOTAL CO2 18 mmol/L Normal: 22 - 32 mmol/L

      ANION GAP 16 mmol/L Normal: 7 - 15 mmol/L

      BUN 21 mg/dL Normal: 6 - 17 mg/dL

      UROBILINOGEN UA 0.2 mg/dl Normal: 0 - 1 mg/dl

      11-DEOXYCORTICOSTERONE, HPLC-MS/MS <5.00 ng/dL Normal: ng/dL - Not sure how to read this and whether this is out of the normal range or not. Normal range is just listed as "ng/dL", with no value.

      MCHC 30.7 g/dL Normal: 31.0 - 37.0 g/dL

      NRBC # <0.01 10^3/uL Normal: 0.03 - 0.32 10^3/uL

      MONOCYTE % 16.3 % Normal: 0.0 - 10.0 %

      Sedimentation Rate (ESR): ESR 16 mm/h Normal: 0 - 15 mm/h

      If you'd like me to pull up anything specifically, let me know. We've obviously tested a lot, so if it wasn't listed above, it's likely that we did test for it and it was in the normal range (but again, if there's something that you want to know, or are curious if we tested, please let me know).

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  • Posted

    Sounds very disturbing, but it does seem they are looking at anything I could name. I didn't even realize until now (just looked it up) that normal BP for children was lower than for adults! Though it makes sense.

    So I know even less about treatment for juvenile high BP, but for adults I would suggest considering diuretics along with others, and I'd wonder at trying amlodipine before ACE/ARB drugs, but perhaps those are not appropriate for children.

    I know for adults "cause" for high BP is almost never even discussed, especially for older adults it's just assumed, but that's not what you want to hear for a child.

    You might also look at diet. By any chance, does he eat anything with turmeric or curcumin in it? Look up "cheese effects" from MAOI's, and turmeric is an MAOI, and this can cause high BP. The fix is (a) to stop taking the turmeric or other MAOI, and (b) to avoid high tyramine foods like sausage and old cheese. See online for more details on this.

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    • Posted

      Hi JX - he definitely eats a lot of cheese. I just looked up the connection with cheese and there's this comment in a paper that I found that reads (essentially), "very similar to the symptoms of a pheochromocytoma", which is exactly what we've been searching for.

      That said, he's not on an MAOI's or the other OTC drugs that would cause this, and his blood pressure doesn't "spike" - it's persistently high. I may cut out the cheese anyway, but I'm curious if this "cheese effect" is specifically an interaction with these other drugs, or if it can occur on it's own? Would be very interested to hear if you know. Thank you so much for your response.

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  • Posted

    Mike, about the cheese, all I can say is it's something easy to try.

    Take a look at all the high tyramine foods and make certain to avoid them for just two or three days. If that's what it is, you will then know.

    I've been trying to figure it out for myself, too. I take turmeric/curcumin as a supplement for other reasons, and it took me forever to figure out I was getting some of these BP effect from cheese and yogurt. It was quite a shock to me. Yogurt!?!?

    So now if I have an attack of high BP, as sometimes happens, I skip the curcumin for a day or two, and that may help. I'm uncertain because it's not entirely clear how long it takes for the curcumin effects to clear out, probably some days, and it may vary, and I don't like to go too long without it, so it becomes this balancing act.

    But the effects are very real.

    Try some nuts instead of cheese, be careful of peanuts for all the usual reasons, and if he might like it and if you have it wherever you are avocado is a healthful fat, too, though not so high on protein.

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    • Posted

      ps - so, whether high tyramine foods can raise BP even without the turmeric, is a bit of an open question for me, but I suspect that the answer is yes, it can.

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  • Posted

    JX is correct that diet may be pushing up BP. Worth looking at. Perhaps look at the DASH Diet book available on Amazon. It's a measured dietary response to control BP. It is NOT a fad diet but one recommended by the American Hypertension Society.

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  • Posted

    Mike,

    I can just imagine your concern with your little one's hypertension issue, my father was told he had high blood pressure when he joined the Navy at 17, he'd probably had it for years. He was very short in stature (5'5") and I was told that being that short amongst other characteristics can predispose someone to high blood pressure.

    When I suspected that I had high BP, I went to see a nephrologist who did a kidney perfusion scan, measured the BP in my lower legs, etc.,, He ended up telling me I had essential hypertension and not malignant hypertension. I never realized that tyramine rich foods could cause hypertension. Labetolol is usually effective as are the newer third generation beta blockers. I take bystolic, but it's quite expensive here in the US. A 90 day supply will run you 202.00 with insurance. I wish you luck with this, it can be difficult to treat sometimes.

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