Re: & Anne - CDG (link didn't work)

[Guest guest]

,

The link didn't work. I have read quite a few articles on the topic

(still interested in yours though) but what I really want to know is what

specific symptoms led your doctors to diagnose the CDG for your kids. Is

this something you think I should be more aware of and talk to our docs

about, even though it sounds quite rare? I know we three seem to be on the

rare side with the vasculitis, but is this really something you think

Asenath and Zipporrah could have? Any info would be greatly appreciated.

Thanks.

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, 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)

& Anne - CDG(transferrin)/ DARLA/ANNE

> to learn more you can go to _www.CDGS/com_ (http://www.CDGS/com)

>

>

[Guest guest]

Darla,

what sent my doc down this path was that glycoproteins were the only thing that could explain all the following symptoms. It was the only thing they all have in common

Protein c deficiency

immunedeficiency

positive sweat chloride

these are seen in all three children