Re: Kim- Frustrated with continual episodes (concerning Zipporrah)

[Guest guest]

We live in Des Moines, Iowa so winters can get pretty cold. We

home-school too, but with 9 kids you have a lot more chance of catching

something quite frequently. With church activities, dance, and our oldest

working in a grocery store, we are bound to get something. The biggest

frustration with Zipporrah (Pooh) is that she gets these tiny viruses or

just fevers from unknown sources constantly. And of course even the low

grade fevers are causing her problems. I appreciate your note and your

prayers.

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: Frustrated with continual episodes (concerning

Zipporrah)

>

>

> Darla,

> I am so sorry to hear about Zipporrah. I wish I could help you,in some

> way,,but all I can do is tell you that I'm sorry,and I hope she gets

> better soon. You mentioned the winter,,where do ya'll live ? I wonder how

> the cold weather might affect a child like yours. We live in Texas,,so we

> don't really have to worry about too much cold weather. And since I

> homeschool,,we don't have sick kids at school,to worry about. Anyway,,,I

> was just wanting to let you know that you and your kids are in our prayers

>

>

>

> Kim mom to Meaghan 15 ~~Katelyn 12 Bipolar,and OCD ~~ Logan 7

> Autism,congenital myopathy,possible mitochondrial disease,and JRA ~~ and

> Ethan 5 and 100 % BOY

>

> ________________________________________________________________

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>

>

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

>

[Guest guest]

Darla,

so sorry to hear that the girls are struggling. I wish I could do more to help.

I am curious if Aseneth's vasculitis has improved with the steroids. As you remember we have the CNS vasculitis as well and the docs here said no to the prednisone. they said that the prednisone would lower an already struggling immune system.

I wonder though if it would help... I worry so much about the strokes.....

Keeping you in my thoughts and prayers.

[Guest guest]

Im sorry... I really hope shes doing better soon... deals

with similar fevers.... theres never a cause for them, and they

always throw him for a loop. he hasnt had one in a while, so were

knocking on wood over here...

Were in Winnipeg, and get pretty brutal winters as well (its already

snowing here!) and Im a bit worried about how will deal with

this winter... Is it common for winter to be a bad time for mito

kids, or is it more just from the increase in viruses going around?

Keely, (mom to , 22 months, possible mito)

> We live in Des Moines, Iowa so winters can get pretty cold.

We

> home-school too, but with 9 kids you have a lot more chance of

catching

> something quite frequently. With church activities, dance, and

our oldest

> working in a grocery store, we are bound to get something. The

biggest

> frustration with Zipporrah (Pooh) is that she gets these tiny

viruses or

> just fevers from unknown sources constantly. And of course even

the low

> grade fevers are causing her problems. I appreciate your note and

your

> prayers.

>

> 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: Frustrated with continual episodes (concerning

> Zipporrah)

>

>

> >

> >

> > Darla,

> > I am so sorry to hear about Zipporrah. I wish I could help

you,in some

> > way,,but all I can do is tell you that I'm sorry,and I hope she

gets

> > better soon. You mentioned the winter,,where do ya'll live ? I

wonder how

> > the cold weather might affect a child like yours. We live in

Texas,,so we

> > don't really have to worry about too much cold weather. And

since I

> > homeschool,,we don't have sick kids at school,to worry about.

Anyway,,,I

> > was just wanting to let you know that you and your kids are in

our prayers

> >

> >

> >

> > Kim mom to Meaghan 15 ~~Katelyn 12 Bipolar,and OCD ~~ Logan 7

> > Autism,congenital myopathy,possible mitochondrial disease,and

JRA ~~ and

> > Ethan 5 and 100 % BOY

> >

> > ________________________________________________________________

> > Speed up your surfing with Juno SpeedBand.

> > Now includes pop-up blocker!

> > Only $14.95/ month - visit http://www.juno.com/surf to sign up

today!

> >

> >

> >

> > Please contact mito-owner with any problems or

questions.

> >