Can Children with low Coagulation use E (the answer)

[Guest guest]

Hi-

was nice enough to answer me privatly but just in case anyone

was following this thread and wanted to know the answer I'll summarize

what she said ...

Upon seeing Ethan's levels she said that she understood my concern and

would be concerned as well. She said there is a possible risk of

bleeding and she could not say for sure that the E or high dose fish

oil would be safe. (although she could not say that they would not

either) She recommended that we have vitamin K studies done and

continue to be followed by a hematologist. That we add some E if we

see neuro symptoms but that we do careful monitoring of coag factors.

She suggested that I show her abstract to our geneticist - I will do

that and also show it to our hematologist and our metabolic neurologist.

So if your child also has low coagulation levels perhaps you should

keep this in mind. Also keep in mind they can change. Ethan's were

apparently normal over the summer whn our GI checked them. Maybe he

ran a less inclusive test though.

Good luck everyone.

Nadine

[Guest guest]

Every lab is a window in time. Several windows show a pattern. The

vitamin E/K relationship is something to look at. There are far worse

ills than apraxia if you are not monitoring coagulation. Nothing to

play around with. As the daughter of someone who died of lymphoma, a

whic can result from unaddressed celiac, who also had hystocytic

leukemia I am here to tell you labs, genetics, etc. are your friend

and are the guide you need to help your child.

>

> Hi-

>

> was nice enough to answer me privatly but just in case

anyone

> was following this thread and wanted to know the answer I'll

summarize

> what she said ...

>

> Upon seeing Ethan's levels she said that she understood my concern

and

> would be concerned as well. She said there is a possible risk of

> bleeding and she could not say for sure that the E or high dose

fish

> oil would be safe. (although she could not say that they would not

> either) She recommended that we have vitamin K studies done and

> continue to be followed by a hematologist. That we add some E if

we

> see neuro symptoms but that we do careful monitoring of coag

factors.

> She suggested that I show her abstract to our geneticist - I will

do

> that and also show it to our hematologist and our metabolic

neurologist.

>

> So if your child also has low coagulation levels perhaps you should

> keep this in mind. Also keep in mind they can change. Ethan's were

> apparently normal over the summer whn our GI checked them. Maybe

he

> ran a less inclusive test though.

>

> Good luck everyone.

> Nadine

>