Guest guest Posted April 19, 2004 Report Share Posted April 19, 2004 The junior or kids vest was recommended to us by Dr. Renaud at the Mayo clinic in Rochester, MN. I do no have personnel experience as we do not have one yet. She did tell me that insurance should pay for it. The link is www.coolsport.net, the smallest is for 45 lbs., I don't know how much you daughter weights, but I hope it helps. Heidi Payton mommy to: Wayne (4) healthy, my soccer player! Adeline Maekenna (2 1/2) Mitochondrial Myopathy non-specific, epilepsy (myoclonic and grand mal seizures), autonomic neuropathy, sensory issues, 100% g-tube fed (due to silent aspiration), numerous GI - issues, asthma, allergies, hypertonia, developmental and speech delay, and our most precious angel. Logan (18 months) healthy, my little flirt! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2004 Report Share Posted April 19, 2004 The junior or kids vest was recommended to us by Dr. Renaud at the Mayo clinic in Rochester, MN. I do no have personnel experience as we do not have one yet. She did tell me that insurance should pay for it. The link is www.coolsport.net, the smallest is for 45 lbs., I don't know how much you daughter weights, but I hope it helps. Heidi Payton mommy to: Wayne (4) healthy, my soccer player! Adeline Maekenna (2 1/2) Mitochondrial Myopathy non-specific, epilepsy (myoclonic and grand mal seizures), autonomic neuropathy, sensory issues, 100% g-tube fed (due to silent aspiration), numerous GI - issues, asthma, allergies, hypertonia, developmental and speech delay, and our most precious angel. Logan (18 months) healthy, my little flirt! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2004 Report Share Posted April 19, 2004 The junior or kids vest was recommended to us by Dr. Renaud at the Mayo clinic in Rochester, MN. I do no have personnel experience as we do not have one yet. She did tell me that insurance should pay for it. The link is www.coolsport.net, the smallest is for 45 lbs., I don't know how much you daughter weights, but I hope it helps. Heidi Payton mommy to: Wayne (4) healthy, my soccer player! Adeline Maekenna (2 1/2) Mitochondrial Myopathy non-specific, epilepsy (myoclonic and grand mal seizures), autonomic neuropathy, sensory issues, 100% g-tube fed (due to silent aspiration), numerous GI - issues, asthma, allergies, hypertonia, developmental and speech delay, and our most precious angel. Logan (18 months) healthy, my little flirt! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2004 Report Share Posted April 20, 2004 , I posted before but never saw the post go through. My oldest daughter (no mito) does not sweat. She wears a Kool Vest that is supplied through HED foundation. It costs $500 btu when they get enough donations they cover it. U may have to be onlist for a month but usually it doesn't take long. I will look today as it's 4am here so I have to wait till everyone gets up. Here is info from the web site I use. we also have with this a spritzer we carry everywhere u can get them at various stores. we fill it with ice water and spray her when needed. also at school she rides a air conditioned van and has a fan next to her desk. We also have a plan in every room she goes to in school on heat emergencys. She gets lethargic, vomits has headaches and muscle pain. The other kinda neat thing is if u look at your daughter's fingerprints she probablt doesn't have any. Non secreters don't have a defined fingerprint like u and I. Every time we have had fingerprinting done with local police it always looks smudged finally one cop realized and put 2 and2 together and told us abot non secreters and we told him yes she doesn't sweat. He was excited as he was a cop for over 20 years and never met one he said u learn about them but never actually get to meet them. So here's info on the site hope it helps http://www.hedfoundation.org/ The KoolVest maintains a comfortable 65° F or 85° F temperature, depending on the model selected. The KoolVest relies on chilled KoolPack bladders to provide comfortable cooling over a period of hours. The bladders are designed to chill to either 65° F or 85° F, then change phase from a solid to a liquid as they absorb heat from the body. Because of PCM's (phase change material) constant temperature behavior, the KoolPacks remain cool during this transition. The Moody Foundation formerly known as the HED Foundation P.O. Box 9421 Hampton, Virginia 23670-0421 or I hope this helps. Also Leigh's disease is one of the diseases listed on this site. So maybe some mods can be done to include mito globally. (mom to caeden 31 mos mito myop) >From: albregra@... >Reply-To: Mito >To: mito >Subject: heat intolerance >Date: Mon, 19 Apr 2004 16:33:52 EDT > >I am sorry to bring this up again. I serched the archives and nothing >came >up. >Grace has always had a problem with heat, but she was little last year and >did not run around as much. She does have autonomic dysfunction. >Yesterday was >warm, high 70's but with a good wind. We had her outside, but in shorts >and >a t shirt. She drank alot. Even with all of this in mind I took her in to >change her diaper. Guess what I found, PRICKLY HEAT. I know people get >it, but >it was not that hot outside. Now, I know I did what worked last year. She >did get prickly heat alot last year but it was mid to high 80's out, and >never >even close to yesterday. Even today when it was high 60's we were in a >warm >room and she was red and clammy, she never sweats alot. >I know people have talked about cooling vests before. I looked at a couple >websites online, but all were for industrial workers and not appropriate >for a >two year old. I really don't know if she is too that point or not. I >would >appreciate any advice, due to the warmer weather quickly approching. Thank >you >in advance. > _________________________________________________________________ From must-see cities to the best beaches, plan a getaway with the Spring Travel Guide! http://special.msn.com/local/springtravel.armx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2004 Report Share Posted April 20, 2004 , I posted before but never saw the post go through. My oldest daughter (no mito) does not sweat. She wears a Kool Vest that is supplied through HED foundation. It costs $500 btu when they get enough donations they cover it. U may have to be onlist for a month but usually it doesn't take long. I will look today as it's 4am here so I have to wait till everyone gets up. Here is info from the web site I use. we also have with this a spritzer we carry everywhere u can get them at various stores. we fill it with ice water and spray her when needed. also at school she rides a air conditioned van and has a fan next to her desk. We also have a plan in every room she goes to in school on heat emergencys. She gets lethargic, vomits has headaches and muscle pain. The other kinda neat thing is if u look at your daughter's fingerprints she probablt doesn't have any. Non secreters don't have a defined fingerprint like u and I. Every time we have had fingerprinting done with local police it always looks smudged finally one cop realized and put 2 and2 together and told us abot non secreters and we told him yes she doesn't sweat. He was excited as he was a cop for over 20 years and never met one he said u learn about them but never actually get to meet them. So here's info on the site hope it helps http://www.hedfoundation.org/ The KoolVest maintains a comfortable 65° F or 85° F temperature, depending on the model selected. The KoolVest relies on chilled KoolPack bladders to provide comfortable cooling over a period of hours. The bladders are designed to chill to either 65° F or 85° F, then change phase from a solid to a liquid as they absorb heat from the body. Because of PCM's (phase change material) constant temperature behavior, the KoolPacks remain cool during this transition. The Moody Foundation formerly known as the HED Foundation P.O. Box 9421 Hampton, Virginia 23670-0421 or I hope this helps. Also Leigh's disease is one of the diseases listed on this site. So maybe some mods can be done to include mito globally. (mom to caeden 31 mos mito myop) >From: albregra@... >Reply-To: Mito >To: mito >Subject: heat intolerance >Date: Mon, 19 Apr 2004 16:33:52 EDT > >I am sorry to bring this up again. I serched the archives and nothing >came >up. >Grace has always had a problem with heat, but she was little last year and >did not run around as much. She does have autonomic dysfunction. >Yesterday was >warm, high 70's but with a good wind. We had her outside, but in shorts >and >a t shirt. She drank alot. Even with all of this in mind I took her in to >change her diaper. Guess what I found, PRICKLY HEAT. I know people get >it, but >it was not that hot outside. Now, I know I did what worked last year. She >did get prickly heat alot last year but it was mid to high 80's out, and >never >even close to yesterday. Even today when it was high 60's we were in a >warm >room and she was red and clammy, she never sweats alot. >I know people have talked about cooling vests before. I looked at a couple >websites online, but all were for industrial workers and not appropriate >for a >two year old. I really don't know if she is too that point or not. I >would >appreciate any advice, due to the warmer weather quickly approching. Thank >you >in advance. > _________________________________________________________________ From must-see cities to the best beaches, plan a getaway with the Spring Travel Guide! http://special.msn.com/local/springtravel.armx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2004 Report Share Posted April 20, 2004 , I posted before but never saw the post go through. My oldest daughter (no mito) does not sweat. She wears a Kool Vest that is supplied through HED foundation. It costs $500 btu when they get enough donations they cover it. U may have to be onlist for a month but usually it doesn't take long. I will look today as it's 4am here so I have to wait till everyone gets up. Here is info from the web site I use. we also have with this a spritzer we carry everywhere u can get them at various stores. we fill it with ice water and spray her when needed. also at school she rides a air conditioned van and has a fan next to her desk. We also have a plan in every room she goes to in school on heat emergencys. She gets lethargic, vomits has headaches and muscle pain. The other kinda neat thing is if u look at your daughter's fingerprints she probablt doesn't have any. Non secreters don't have a defined fingerprint like u and I. Every time we have had fingerprinting done with local police it always looks smudged finally one cop realized and put 2 and2 together and told us abot non secreters and we told him yes she doesn't sweat. He was excited as he was a cop for over 20 years and never met one he said u learn about them but never actually get to meet them. So here's info on the site hope it helps http://www.hedfoundation.org/ The KoolVest maintains a comfortable 65° F or 85° F temperature, depending on the model selected. The KoolVest relies on chilled KoolPack bladders to provide comfortable cooling over a period of hours. The bladders are designed to chill to either 65° F or 85° F, then change phase from a solid to a liquid as they absorb heat from the body. Because of PCM's (phase change material) constant temperature behavior, the KoolPacks remain cool during this transition. The Moody Foundation formerly known as the HED Foundation P.O. Box 9421 Hampton, Virginia 23670-0421 or I hope this helps. Also Leigh's disease is one of the diseases listed on this site. So maybe some mods can be done to include mito globally. (mom to caeden 31 mos mito myop) >From: albregra@... >Reply-To: Mito >To: mito >Subject: heat intolerance >Date: Mon, 19 Apr 2004 16:33:52 EDT > >I am sorry to bring this up again. I serched the archives and nothing >came >up. >Grace has always had a problem with heat, but she was little last year and >did not run around as much. She does have autonomic dysfunction. >Yesterday was >warm, high 70's but with a good wind. We had her outside, but in shorts >and >a t shirt. She drank alot. Even with all of this in mind I took her in to >change her diaper. Guess what I found, PRICKLY HEAT. I know people get >it, but >it was not that hot outside. Now, I know I did what worked last year. She >did get prickly heat alot last year but it was mid to high 80's out, and >never >even close to yesterday. Even today when it was high 60's we were in a >warm >room and she was red and clammy, she never sweats alot. >I know people have talked about cooling vests before. I looked at a couple >websites online, but all were for industrial workers and not appropriate >for a >two year old. I really don't know if she is too that point or not. I >would >appreciate any advice, due to the warmer weather quickly approching. Thank >you >in advance. > _________________________________________________________________ From must-see cities to the best beaches, plan a getaway with the Spring Travel Guide! http://special.msn.com/local/springtravel.armx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2004 Report Share Posted April 20, 2004 www.hedfoundation.org Thank you, I emailed this website. Hopefully they will be able to help us. Quote Link to comment Share on other sites More sharing options...
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