High Blood Pressure question

[Guest guest]

Hi All :-)

Not sure if this is going to turn out to be anything more than a blip

on the radar screen, but Madison's blood pressure today at the dentists

was high, especially for her and I am a little concerned. This was

her usual every 6 month cleaning and check up and not something that has

ever stressed her out before (she's been going since she was 3)....realistically

for her, anything that doesn't require sticking her is no big deal....LOL.

Anyway, her reading before the cleaning was 134/95 and after the cleaning

it was 130/83. Looking back through her records, in the last two

years her readings have run 90-105/54-65, so this is a big jump.

I did realize that I don't have any of her readings from recent doc appointments,

so will call and get those tomorrow to see if they have been high anywhere

else. I'd like to think it was just their machine, but they had been

checking kids all day and apparently not seen this in any of the other

kids, so not sure how much I can hang my hat on it being a technical problem.

Anyway.....was just wondering if any of you guys had seen this kind

of thing before in your kid's and what, if anything, came of it.

This is all new territory for me, so any thoughts you might have would

be very comforting!!

-- BIG hugs,

Kass, proud mom to Chance(11-Mito), Madison(8-Mito),

and Abby(7-Mito)

"Life is not measured by the breaths we take, but by the moments

that take our breath away" Unknown

[Guest guest]

Kass,

Has Cushing syndrome been ruled out? It often presents with weight

gain and high blood pressure. To test for Cushing's, I think that you

would need to test 24 hour urine free cortisol levels.

Cushing's

syndrome is a hormonal disorder caused by prolonged exposure of the

body's tissues to high levels of the hormone cortisol. Sometimes

called "hypercortisolism," it is relatively rare and most commonly

affects adults aged 20 to 50. An estimated 10 to 15 of every million

people are affected each year.

Background: Cushing

syndrome is caused by prolonged exposure to elevated levels of either

endogenous or exogenous glucocorticoids.

..

Individuals often complain

of proximal muscle weakness, easy bruising, weight gain, hirsutism,

and, in children, growth retardation. Hypertension, osteopenia,

diabetes mellitus, and impaired immune function may occur.

Patients with Cushing

syndrome may complain of weight gain, especially in the face,

supraclavicular region, upper back, and torso.

Take care,

[Guest guest]

Grace has had high blood pressure pretty much all of her life. BUT nobody knows why. Her cardiologist says it does not have to do with her heart and we have seen a nephrologist who says it is not her kidneys. So far everyone is reluctant to treat it, because her echo's have been perfect and that her blood pressure does drop within the normal range when she is in deep sleep. They are worried that if they treat it, she may drop too low during the night, and since there is no sign of any damage they just closely watch it. I guess it is just one of those autonomic things, or another way for Grace to scare nurses.

FYI her typical BP is about 95-110/85-95, her highest was 220/110

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[Guest guest]

Thanks for sharing !!

We are seeing her ped tomorrow and we'll see how things look there.

Still hoping it was a mistake and if not that we can get to the bottom

of it quickly.

-- BIG hugs,

Kass, proud mom to Chance(11-Mito), Madison(8-Mito),

and Abby(7-Mito)

wrote:

Grace has had high blood pressure

pretty much all of her life. BUT nobody knows why. Her cardiologist

says it does not have to do with her heart and we have seen a nephrologist

who says it is not her kidneys. So far everyone is reluctant to treat

it, because her echo's have been perfect and that her blood pressure does

drop within the normal range when she is in deep sleep. They are

worried that if they treat it, she may drop too low during the night, and

since there is no sign of any damage they just closely watch it.

I guess it is just one of those autonomic things, or another way for Grace

to scare nurses.

FYI her typical BP is about 95-110/85-95, her

highest was 220/110

[Guest guest]

Thanks a ton for sharing Tammy!!

Hoping too that it was the cuff or the machine!! They changed

cuff sizes for her and it looked like the right size, but one just never

knows. Hopefully we'll know more after we see the ped tomorrow.

-- BIG hugs,

Kass, proud mom to Chance(11-Mito), Madison(8-Mito),

and Abby(7-Mito)

Tammy wrote:

Kass, Our

son has very irregular blood pressures. His go very high and will

drop very low. His cardiac workup is ok. We have seen the nephrologist

and that is thought to be the cause as he also struggles with fluid retention.

He is not treated for the hypertension because he also drops very low 50s/30s.

I think it is just on of those 'mito things'... I hope yours was

just a wrong size BP cuff. That can elevate a blood pressure if it

is too small or even lower it if it is too big. Tammy

[Guest guest]

Thanks so much !!! Your always such a wealth of information

for me hun.

The interesting part of this possibility is that I have told the docs

that she reminded me of someone on Prednisone since she began the rapid

weight gain more than a year ago now (and yes, its still continuing even

while eating less than 1200 calories a day and increasing exercise).

Also interesting to note is that she has had easy bruising for a while

now (we've tested bleeding time several times and even saw the hematologist

trying to get to the bottom of it) AND has hirsutism since birth, non-familial.

We're also, for the first time, seeing some marginally high blood sugars

where as before it had always been lows. Maybe just maybe, if her

BP was truly high, this will prompt someone to try and figure out whats

going on with her finally. I am SO tired of asking and getting no

where!!

Thanks so much for bringing this information to my attention!!!

I'll keep you posted. Thinking of you.

-- BIG hugs,

Kass, proud mom to Chance(11-Mito), Madison(8-Mito),

and Abby(7-Mito)

Plant wrote:

Kass,

Has Cushing syndrome been ruled out? It

often presents with weight gain and high blood pressure. To test

for Cushing's, I think that you would need to test 24 hour urine free cortisol

levels. Cushing's syndrome is

a hormonal disorder caused by prolonged exposure of the body's tissues

to high levels of the hormone cortisol. Sometimes called "hypercortisolism,"

it is relatively rare and most commonly affects adults aged 20 to 50. An

estimated 10 to 15 of every million people are affected each year.

Background:

Cushing

syndrome is caused by prolonged exposure to elevated levels of either endogenous

or exogenous glucocorticoids.

..

Individuals

often complain of proximal muscle weakness, easy bruising, weight gain,

hirsutism, and, in children, growth retardation. Hypertension, osteopenia,

diabetes mellitus, and impaired immune function may occur.

Patients with

Cushing syndrome may complain of weight gain, especially in the face, supraclavicular

region, upper back, and torso.

Take care,

[Guest guest]

We see fluxuating blood pressures on our girls frequently. It can be

due to many issues. I wouldn't worry much if it only happens once in a

while, but if you see a continual raising of the BP as well as having other

concerning factors I would definitely take note and let the docs know.

Zipporrah recently had several weeks where her BP was 130s over 80 or 90s

and of course at 16 months of age this is high and we were concerned. Now

that her fatigue is bad again her BP today 80s over 50s. Definitely a

change. Asenath has done the same thing and we have been told not to worry

about it much. Both girls by the way are even on BP meds, not for BP issues

but because of Asenath's narrow arteries and the concerns with the continual

SLE's. They still have high levels at times despite the meds. Go figure!

Hope you guys are doing well otherwise.

See www.caringbridge.org/ia/mitomomof9 and www.heartbeatsformito.org to see

a photo look into what Mito looks like

Darla: mommy to

Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube,

hypotonicity, disautonomy, SID, global delays, asthma, cyclic vomiting,

bladder issues, wheelchair for distances, eye issues, autistic behaviors,

gastric emptying issues...

Zipporrah (14 months) Mito, strokes, neuro-motor planning dys., SID, GERD,

dysphasia, 100% G-tube fed, speech delays, extreme fatigue, excessive

phlegm, asthma, trach issues, aberrant subclavian artery, disautonomy,

hypertonicity, migraines, possible seizures, dumping syndrome, iron

deficiency, ...

Luke (16), Leah (14), Rachael (13), Isaac (10), Tirzah (8), Kezia (4), &

Marquis (3), Joey & (12 months) (some with Mito symptoms)

High Blood Pressure question

> Hi All :-)

>

> Not sure if this is going to turn out to be anything more than a blip on

> the radar screen, but Madison's blood pressure today at the dentists was

> high, especially for her and I am a little concerned. This was her

> usual every 6 month cleaning and check up and not something that has

> ever stressed her out before (she's been going since she was

> 3)....realistically for her, anything that doesn't require sticking her

> is no big deal....LOL. Anyway, her reading before the cleaning was

> 134/95 and after the cleaning it was 130/83. Looking back through her

> records, in the last two years her readings have run 90-105/54-65, so

> this is a big jump. I did realize that I don't have any of her readings

> from recent doc appointments, so will call and get those tomorrow to see

> if they have been high anywhere else. I'd like to think it was just

> their machine, but they had been checking kids all day and apparently

> not seen this in any of the other kids, so not sure how much I can hang

> my hat on it being a technical problem.

>

> Anyway.....was just wondering if any of you guys had seen this kind of

> thing before in your kid's and what, if anything, came of it. This is

> all new territory for me, so any thoughts you might have would be very

> comforting!!

>

> -- BIG hugs,

> Kass, proud mom to Chance(11-Mito), Madison(8-Mito), and Abby(7-Mito)

> " Life is not measured by the breaths we take, but by the moments that

> take our breath away " Unknown

>