Re: Please someone respond to my post

[Guest guest]

Hi ,

I'm sorry to hear that your daughter Kierra is so ill. SCAD can be a

scary disease, but there is help available. The best place to turn

is the FOD Support network, which I have found to be VERY helpful in

the past. They have an online (email) support group, with a very

understanding and well informed group of people participating. You

can sign up here: <http://www.fodsupport.org/join_list.htm>

Often, with fatty oxidation disorders like SCAD, there is a secondary

mitochondrial disorder. This is most likely a " back up " of the

metabolic processes. That's what happened to my daughter, and to me.

Please make sure that your doctors take the time to educate you on

your daughter's illnesses, so that you can recognize when she is in a

crisis, and be proactive in preventing a crisis in the future.

All the best,

Theresa

>

> I posted about my daughter yesterday. I am begging for support and

> help from you all.

>

> Thank you

>

[Guest guest]

I am not sure if I responded to your posting the other day or not, but if

not, welcome. Please tell us more about your situation and about your

affected family member. This group is a wealth of information and a very

caring group of women. Tell us more and we will try to support you the best

we can.

See www.caringbridge.org/ia/mitomomof9 and this link to see a real look into

Mito using a photo collage of my girls at www.heartbeatsformito.org

Darla: mommy to

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

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

Zipporrah (12 months) Mito, strokes, neuro-motor planning dysfunction, SID,

GERD, 100% G-tube fed, asthma, trach issues, aberrant subclavian artery,

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)

Please someone respond to my post

>

>

> I posted about my daughter yesterday. I am begging for support and

> help from you all.

>

> Thank you

>

>

>

>

>

>

>

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

>

[Guest guest]

jennifer,

hi i'm sorry but my computer was messed up i didnt get your post yesterday. you can e-mail me personally if you want.

catwomank3@...

karen

Please someone respond to my post

I posted about my daughter yesterday. I am begging for support and help from you all. Thank you Please contact mito-owner with any problems or questions.