when to do metabolic tests?

[Guest guest]

Jericho started having trouble swallowing, late Friday evening. No

biggie. Then Saturday he choked more on drinks, and a piece of crunchy

candy. Then today at breakfast, he was choking lots on his drink. I

wasn't here the rest of the day, but he was coughing when I got home

this evening.

So far it's pretty mild, as these things go. I'm pretty sure nectar

consistency will handle it, and of course, easier-to-swallow foods.

My question is - should I wait until things get severe before going for

metabolic testing? My impression is that some of these disorders (the

milder, intermittent ones especially) only show up during the bigger

crashes, is that right?

Lynne

[Guest guest]

Unfortunately for some with metabolic conditions the tests only show

abnormal when the person is pretty ill. However, some of us, like myself or

my girls, show abnormal stuff all the time even when we feel better. I

think you should ask you doctor when he/she would like to run them. I also

advise you see someone like Dr. Whiteman or another metabolic doctor who

really knows what to look for.

Sorry to hear he is still having issues. hopefully they will be short

lived.

Darla: mommy to

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

hypotonicity, disautonomy, SID, dev. delays, asthma, chronic vomiting...

Zipporrah (11 mon.) Mito, strokes, SID, GERD, 100% G-tube fed, asthma, trach

issues, disautonomy, hypo & hypertonicity, migraines, possible seizures,

dumping syndrome...

Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (8), Kezia (3), &

Marquis (2) (some with Mito symptoms)

when to do metabolic tests?

>

> Jericho started having trouble swallowing, late Friday evening. No

> biggie. Then Saturday he choked more on drinks, and a piece of crunchy

> candy. Then today at breakfast, he was choking lots on his drink. I

> wasn't here the rest of the day, but he was coughing when I got home

> this evening.

>

> So far it's pretty mild, as these things go. I'm pretty sure nectar

> consistency will handle it, and of course, easier-to-swallow foods.

>

> My question is - should I wait until things get severe before going for

> metabolic testing? My impression is that some of these disorders (the

> milder, intermittent ones especially) only show up during the bigger

> crashes, is that right?

>

> Lynne

>

>

>

>

> Please contact mito-owner with any problems or questions.

>

[Guest guest]

> Unfortunately for some with metabolic conditions the tests only

show

> abnormal when the person is pretty ill.

Thanks! I think it will be better to wait awhile, then. His labs

are not telling us anything in between times.

> Sorry to hear he is still having issues. hopefully they will

be short lived.

Me too! :-)

However, I think we are just gearing up for the usual fall/winter

problems, which will likely get much worse. I'm not sure why he has

more trouble then. I think this time was directly related to his

sister's birthday party yesterday. He generally has trouble after

Halloween, Thanksgiving, and Christmas, too.

I also keep wondering if it has anything to do with temp changes, and

going from a warm house to a cold vehicle, to warm buildings, and

cold playgrouds, and so forth. Or maybe he gets viruses but they

show up differently in him? Although, he rarely seems sick and when

he does it's usually very mild.

Lynne

[Guest guest]

thats interesting that you mention the holiday connection. For my

parents, the ONLY time I would get sick as a child was Christmas,

birthdays, halloween, and easter... and vacations. I was totally

healthy the rest of the year, but seriously from my first birthday

on, I was sick for ALL the major holidays... even as a

baby/toddler... The past 4 birthdays and Christmases have been

spent in hospital for various problems... my honeymoon involved a

trip to the ER, and every vacation i can remember involved a trip to

a doctor or hospital...

My parents alwasy figured I just couldnt process stress well, even

good stress... in hindsight it makes far more sense now.

> > Unfortunately for some with metabolic conditions the tests only

> show

> > abnormal when the person is pretty ill.

>

> Thanks! I think it will be better to wait awhile, then. His labs

> are not telling us anything in between times.

>

> > Sorry to hear he is still having issues. hopefully they

will

> be short lived.

>

> Me too! :-)

>

> However, I think we are just gearing up for the usual fall/winter

> problems, which will likely get much worse. I'm not sure why he

has

> more trouble then. I think this time was directly related to his

> sister's birthday party yesterday. He generally has trouble after

> Halloween, Thanksgiving, and Christmas, too.

>

> I also keep wondering if it has anything to do with temp changes,

and

> going from a warm house to a cold vehicle, to warm buildings, and

> cold playgrouds, and so forth. Or maybe he gets viruses but they

> show up differently in him? Although, he rarely seems sick and

when

> he does it's usually very mild.

>

> Lynne

[Guest guest]

If you read the Mito list much you will notice quite a few of the kids

are getting ill now too. Through the fall, winter, and early spring months

there are so many viruses to fight off plus, as you said, many temperature

changes and tons of activities that tend to wear kids and adults out more

causing fatigue issues and in turn crashes. It happens every fall to most

of the Mito group kids, mine included. In fact both my girls are battling

viruses presently and Zipporrah has been hit already on her left side. Her

whole body is weaker and she is having a hard time dealing with her new leg

braces and shoes as now they are just too heavy for her weakened legs.

Both my girls go downhill several days before any viral symptoms

appear. They start getting extra tired sleeping tons, droopy eye lids, and

get crabbier. Then often I will see temperature increases, tachycardia, and

loud breathing before the nose runs or coughing begin. I think the girls

show viral attacks so much sooner because even the small attacks affect them

so much greater than it would for the healthier children. When my healthier

kids sneeze a little or have a runny nose, the girls get much worse. They

also seem to catch everything! If someone has something small I know the

girls will get it for sure and much worse. It can be a frustrating process

to watch. I was enjoying the late spring and summer sooooooo much and

having very little viral attacks to deal with was great. I knew once fall

hit they would probably start to go downhill. Thankfully thus far Asenath

is doing well with her virus and hasn't had any stroke/episodes. Zipporrah

is much more fragile than her at this point due to the malabsorption

issues/dumping syndrome, iron deficiency, and being younger. I just hope

the season gets better for you though.

Darla: mommy to

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

hypotonicity, disautonomy, SID, dev. delays, asthma, cyclic vomiting...

Zipporrah (11 mon.) Mito, strokes, SID, GERD, 100% G-tube fed, asthma, trach

issues, disautonomy, hypo & hypertonicity, migraines, possible seizures,

dumping syndrome, iron deficiency...

Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (8), Kezia (3), &

Marquis (2) (some with Mito symptoms)

Re: when to do metabolic tests?

>

>

>

> > Unfortunately for some with metabolic conditions the tests only

> show

> > abnormal when the person is pretty ill.

>

> Thanks! I think it will be better to wait awhile, then. His labs

> are not telling us anything in between times.

>

> > Sorry to hear he is still having issues. hopefully they will

> be short lived.

>

> Me too! :-)

>

> However, I think we are just gearing up for the usual fall/winter

> problems, which will likely get much worse. I'm not sure why he has

> more trouble then. I think this time was directly related to his

> sister's birthday party yesterday. He generally has trouble after

> Halloween, Thanksgiving, and Christmas, too.

>

> I also keep wondering if it has anything to do with temp changes, and

> going from a warm house to a cold vehicle, to warm buildings, and

> cold playgrouds, and so forth. Or maybe he gets viruses but they

> show up differently in him? Although, he rarely seems sick and when

> he does it's usually very mild.

>

> Lynne

>

>

>

>

>

>

> Please contact mito-owner with any problems or questions.

>