Re: Metabolic acidosis---Darla & all

[Guest guest]

WHat exactly is metabolic acidosis and what type of labs are run to look for it?

I ask, because Chelsea came down with a 'small' virus last week. She did not really seem sick, other than being more tired and lethargic than ususal, and had increased, thick secretions. She had one whopper of a convulsion tues evening after our trip to chicago, but then none for the next 2 days. But then Fri and Sat, she had quite a few seizures, all triggered by light or focusing too fast. I eventually just put her to bed and kept her in the dark and quiet, and she seemed to do better at that point. She woke up Sun feeling much better and has not had any more seizures. It definatly seems like something was going on in her system that was causing extreme CNS sensitivity. Chelsea also seems very prone to decompensation with any kind of inflammation, including cutting teeth.

If it is acidosis, is there any way to treat it, other than letting it run it's course.Ibuprofin and fresh papya reaaly seem to help when she gats like this.

e, Chelsea's mom(nonspecific mito)

[Guest guest]

-Hello e

I don't know if this is what you're talking about, but gets

acidotic because her kidneys waste bicarb, especially when she's

sick. When she has electrolytes drawn, her bicarb is very low, her

chloride is high, potassium is low, and anion gap is high. She gets

bicitra 4 times a day, which is kind of like taking a baking soda

supplement, to keep her blood from getting too acidic. She's been on

all sorts of other stuff, including adding extra acetate in the TPN,

but the bicitra always works the best. It's a really safe med, too,

more like a supplement. Her body would just excrete it, like

vitamins, if she got too much. The big drawbacks are the doses are

large (a couple teaspoons at a pop), have to be given frequently (4

times a day for us), and it's the nastiest tasting stuff on earth.

Was Chelsea dehydrated? That would tie in with the thick

secretions. It would make acidosis worse too. Does she have a G

tube? We automatically increase fluids when we're traveling or there

is anything viral going on. Always pedialyte or IV fluids, never

regular water.

Good luck!

Heidi, 's Mom

>

[Guest guest]

I believe one of the other mom's answered the metabolic acidosis

issue well, but wanted to just add my two cents. Asenath has blood

work done about every two to three months to check her acidosis

issue. Bi-carbs, anion gap, all that is definitely part of it. We

were told it can really throw your major organs into failure if not

controlled. It has been a while since I discussed this issue with

Dr. Whiteman so not sure how well I understand it now. If you are

real interested a search on the internet under the term metabolic

acidosis will reveal plenty though. As far as treatment, Asenath

takes the Citra-3 med three times daily, and as the other mom said,

she takes a large amount to control her acidosis. Viruses cause

several problems for Mito kids that cause crisises and decline in

abilities or stroke episodes. Your carnitine needs increase, COQ10

needs increase, energy is used to fight virus so less to maintain

other areas of the body, etc.

Our girls are also fighting a virus with lots of phlegm build-

up. Asenath is vomiting more, wheezy with lots of coughing, panting

while walking around, droopy eyed, walking worse with less energy.

Zipporrah is extra gaggy, refluxing more, wheezy, stridorous, extra

sleepy (slept most of the day today and all night too). I hope they

get through this virus quickly!

Darla: mommy to Asenath, Zipporrah, Luke, and the other kiddos

> WHat exactly is metabolic acidosis and what type of labs are run to

look for

> it?

> I ask, because Chelsea came down with a 'small' virus last week.

She did not

> really seem sick, other than being more tired and lethargic than

ususal, and

> had increased, thick secretions. She had one whopper of a

convulsion tues

> evening after our trip to chicago, but then none for the next 2

days. But then Fri

> and Sat, she had quite a few seizures, all triggered by light or

focusing too

> fast. I eventually just put her to bed and kept her in the dark and

quiet, and

> she seemed to do better at that point. She woke up Sun feeling much

better

> and has not had any more seizures. It definatly seems like

something was going

> on in her system that was causing extreme CNS sensitivity. Chelsea

also seems

> very prone to decompensation with any kind of inflammation,

including cutting

> teeth.

> If it is acidosis, is there any way to treat it, other than letting

it run

> it's course.Ibuprofin and fresh papya reaaly seem to help when she

gats like

> this.

>

> e, Chelsea's mom(nonspecific mito)