Guest guest Posted December 16, 2004 Report Share Posted December 16, 2004 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. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2004 Report Share Posted December 16, 2004 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. > > > Quote Link to comment Share on other sites More sharing options...
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