Re:Lynn- Virus causing gagging (to those who deal with swallow issues)

[Guest guest]

Zipporrah has decent head control so we don't have to worry about that

thankfully. We have been keeping her upright as much as possible but when

she wakes up she has been gagging and dry heaving trying to get the phlegm

out. I just worry how much worse the cold will get and what to do if it

gets much worse. Our ped. says if she gets much worse to bring her in to

see her, but I know the outcome will be, " Don't worry, it's only a virus. "

With my response being, " But viruses in MY kids cause strokes! So it's not

JUST a virus! " It is so frustrating as she knows this, but still doesn't

seem to grasp the significance. This is the first bad cold Zipporrah has

had since her 4 month stroke. I am trying to stay optimistic saying she

will get through this one ok and without a stroke, but I must admit I am

quite worried! She just can't take too much more assault to her throat,

mouth, trachea, etc. She already can't eat or drink orally and has a floppy

airway. Sorry to sound panicky! Just trying to get grip on my emotions and

try to find out what I should do to best help her through this. I plan to

do many steam treatments, vaporizer use, bulb syringe suctioning (I KNOW

this won't get it all though and will only gag her as she can't put much in

her mouth!), and all the other mom tricks to get her through the virus, but

if she gets much worse I may have to go to the hospital and I just don't

want to deal with those ER docs!!! They can be soooooo frustrating here in

our town! I wish I lived near Mayo as they know my girls and what they are

dealing with and how important it is to be careful with them not to overlook

anything. Anyway...Bla bla...

Darla: mommy to

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

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

Zipporrah (11 mon.) Mito, strokes, SID, GERD, 100% G-tube fed, asthma, trach

issues, disautonomy, hypo & hypertonicity, migraines, possible seizures,

dumping syndrome...

Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (8), Kezia (3), &

Marquis (2) (some with Mito symptoms)

Re: Virus causing gagging (to those who deal with swallow

issues)

> The times when Jericho has had trouble with aspirating his own

> secretions, he is also very weak. We lay him on his side, so the

> secretions tend to run out the side of his mouth as drool. It works

> much better than anything else we found. We have to prop him up

> adequately, or else he rolls onto his back and has lots of trouble

> again.

>

> Jericho has only had serious trouble for a few days or a week or so at a

> time. If it lasts longer than that, you'll want to look into other

> options. At least with Jericho, it can be very hard to keep a child

> propped on their side when they are very floppy. Plus it is still a

> major problem when you go places, and they are riding upright in the

> carseat or booster seat. Those times, it seems to help to keep the seat

> as upright as they can possibly manage and still maintain a minimum of

> head control, so their head isn't falling. Having an older sibling

> alongside them can help tremendously, because the older one can help

> prop up the younger one's head, and then the seat can be more upright.

> We found that we just had to accept that he would be wheezing when we

> got someplace, but we tried to minimize it as best we could.

>

> Lynne

>

> Darla Klein wrote:

>

> > Both of the girls are getting a virus and Zipporrah in particular

> > has

> > me worried. She is getting stuffed up and really gagging due to it.

> > With

> > all her swallow issues and not being allowed to eat orally anything

> > yet, how

> > do I deal with the excess secretions and phlegm? Do I need to worry

> > about

> > this? I am worried that if she has a bad enough viral attack that she

> > will

> > not be able to handle it. Can any of you give me advise or let me

> > know when

> > you decided to get a suctioner or whatever your docs suggest you do?

> >

> > Darla: mommy to

> > Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures,

> > G-tube,

> > hypotonicity, disautonomy, SID, dev. delays, asthma, chronic

> > vomiting...

> > Zipporrah (11 mon.) Mito, strokes, SID, GERD, 100% G-tube fed, asthma,

> > trach

> > issues, disautonomy, hypo & hypertonicity, migraines, possible

> > seizures,

> > dumping syndrome...

> > Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (8), Kezia (3),

> > &

> > Marquis (2) (some with Mito symptoms)

> >

> >

> > Please contact mito-owner with any problems or

> > questions.

> >

> >

> >

[Guest guest]

Darla,

I know you aren't supposed to use aspirin during a virus in kids. But

isn't there some sort of blood thinner or anti-coagulant that she could

take during a virus, to help fend off strokes during those times?

Anything short-acting, that she could just take when she was at risk,

like now?

Lynne