Re: Digest Number 2946

[Guest guest]

I am not sure who needs the help with the insurance issuse but please email me

privately as I might have some advice thanks.

Sincerely,

Donna K

---- Mito wrote:

>

>

> There are 15 messages in this issue.

>

> Topics in this digest:

>

> 1. Re: - Hydration issue (What do YOU do?)

>

> 2. Re: Can't afford to see Shoffner... now what?

> From: VisibleWorship@...

> 3. Re: Apraxia of speech? anyone??

>

> 4. Re: Venting... not having a good day

>

> 5. Re: Hydration issue (What do YOU do?)

> From: jayvelde@...

> 6. Re: Apraxia of speech? anyone??

>

> 7. Re: Can't afford to see Shoffner... now what?

>

> 8. Re: Hydration issue (What do YOU do?)

>

> 9. RE: Dates of June 2005 UMDF Conference

>

> 10. Re: crashes/aspirating

>

> 11. Re: Can't afford to see Shoffner... now what?

>

> 12. Re: Apraxia of speech? anyone??

> From: hilandgang@...

> 13. RE: Dates of June 2005 UMDF Conference

>

> 14. What is the benefit of actual diagnosis

>

> 15. What is a conference like?

>

>

>

> ________________________________________________________________________

> ________________________________________________________________________

>

> Message: 1

> Date: Thu, 16 Dec 2004 13:06:38 -0600

>

> Subject: Re: - Hydration issue (What do YOU do?)

>

> We do give Asenath many varieties of liquids and that really isn't my

> question, but rather how much you guys put through the g-tubes (or orally)

> per day to keep them hydrated. It just seems Asenath needs much more lately

> than she used to, so I wanted to know an average amount suggested to give

> her. The reason I have been using the Pedialite through the g-tube is

> because that is what the docs recommended and I figured it must be the best

> for rehydrating since they wanted us to use it. I have used lots of other

> types as well, as K. also gave me some good ideas of substitutes

> for Pedialite that would do the same thing. I will check out some other

> recipes as well online. Thank you.

> 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)

>

>

> Re: Hydration issue (What do YOU do?)

>

>

> >

> > Darla:

> >

> > Do you get the name brand or the generic form? I know you can get the

> > generic brand a lot cheaper. Plus there is a recipe on line for making

> > your own type of Gaterade such. It has the salt content and all that is

> > in the stuff that you buy at the store. Our summer doctor told me about

> > it and to use it on Leah if she ever starts to seem like she needs

> > hydrating. Is it just pedilyte or can you give her all sorts of

> > liquids? Broths, lemonade, even just plain water. You might want to

> > talk to a dietician and see what sort of liquids need to be given. I

> > know even with Leah they said if I can push a syringe of liquid in to

> > her mouth I can't remember how often, but at least to get some thing in

> > her. Good luck.

> >

> > Nerenhausen

> > mom to Leah

> >

> > Darla Klein wrote:

> >

> > > We have been trying to regulate Asenath's feedings using the G-tube

> > >throughout the day and night now rather than just doing tube feedings at

> > >night time and trying desperately to get her to eat " something " during

> > >the

> > >day only to see her basically starve all day. Since her last

> > >hospitalization we have been noticing a tendancy for her to run low blood

> > >pressures and other symptoms indicating dehydration. We have noticed

> > >Pedialite added to her tube feedings help as well as pushing liquids

> > >during

> > >the day BUT when I lower or stop the Pedialite, she gets more dehydrated

> > >again. WHAT DO YOU GUYS REGULARLY ADD TO THE TUBE FEEDINGS TO KEEP YOUR

> > >CHILD HYDRATED AND HOW MUCH? I like adding Pedialite, but it is so

> > >expensive. Do any of you get it covered by insurance or medicaid???

> > >

> > >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,

> > >preseverating tendancies...

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

> > >

[Guest guest]

I am not sure who needs the help with the insurance issuse but please email me

privately as I might have some advice thanks.

Sincerely,

Donna K

---- Mito wrote:

>

>

> There are 15 messages in this issue.

>

> Topics in this digest:

>

> 1. Re: - Hydration issue (What do YOU do?)

>

> 2. Re: Can't afford to see Shoffner... now what?

> From: VisibleWorship@...

> 3. Re: Apraxia of speech? anyone??

>

> 4. Re: Venting... not having a good day

>

> 5. Re: Hydration issue (What do YOU do?)

> From: jayvelde@...

> 6. Re: Apraxia of speech? anyone??

>

> 7. Re: Can't afford to see Shoffner... now what?

>

> 8. Re: Hydration issue (What do YOU do?)

>

> 9. RE: Dates of June 2005 UMDF Conference

>

> 10. Re: crashes/aspirating

>

> 11. Re: Can't afford to see Shoffner... now what?

>

> 12. Re: Apraxia of speech? anyone??

> From: hilandgang@...

> 13. RE: Dates of June 2005 UMDF Conference

>

> 14. What is the benefit of actual diagnosis

>

> 15. What is a conference like?

>

>

>

> ________________________________________________________________________

> ________________________________________________________________________

>

> Message: 1

> Date: Thu, 16 Dec 2004 13:06:38 -0600

>

> Subject: Re: - Hydration issue (What do YOU do?)

>

> We do give Asenath many varieties of liquids and that really isn't my

> question, but rather how much you guys put through the g-tubes (or orally)

> per day to keep them hydrated. It just seems Asenath needs much more lately

> than she used to, so I wanted to know an average amount suggested to give

> her. The reason I have been using the Pedialite through the g-tube is

> because that is what the docs recommended and I figured it must be the best

> for rehydrating since they wanted us to use it. I have used lots of other

> types as well, as K. also gave me some good ideas of substitutes

> for Pedialite that would do the same thing. I will check out some other

> recipes as well online. Thank you.

> 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)

>

>

> Re: Hydration issue (What do YOU do?)

>

>

> >

> > Darla:

> >

> > Do you get the name brand or the generic form? I know you can get the

> > generic brand a lot cheaper. Plus there is a recipe on line for making

> > your own type of Gaterade such. It has the salt content and all that is

> > in the stuff that you buy at the store. Our summer doctor told me about

> > it and to use it on Leah if she ever starts to seem like she needs

> > hydrating. Is it just pedilyte or can you give her all sorts of

> > liquids? Broths, lemonade, even just plain water. You might want to

> > talk to a dietician and see what sort of liquids need to be given. I

> > know even with Leah they said if I can push a syringe of liquid in to

> > her mouth I can't remember how often, but at least to get some thing in

> > her. Good luck.

> >

> > Nerenhausen

> > mom to Leah

> >

> > Darla Klein wrote:

> >

> > > We have been trying to regulate Asenath's feedings using the G-tube

> > >throughout the day and night now rather than just doing tube feedings at

> > >night time and trying desperately to get her to eat " something " during

> > >the

> > >day only to see her basically starve all day. Since her last

> > >hospitalization we have been noticing a tendancy for her to run low blood

> > >pressures and other symptoms indicating dehydration. We have noticed

> > >Pedialite added to her tube feedings help as well as pushing liquids

> > >during

> > >the day BUT when I lower or stop the Pedialite, she gets more dehydrated

> > >again. WHAT DO YOU GUYS REGULARLY ADD TO THE TUBE FEEDINGS TO KEEP YOUR

> > >CHILD HYDRATED AND HOW MUCH? I like adding Pedialite, but it is so

> > >expensive. Do any of you get it covered by insurance or medicaid???

> > >

> > >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,

> > >preseverating tendancies...

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

> > >