Guest guest Posted June 22, 1999 Report Share Posted June 22, 1999 In a message dated 6/21/99 11:12:44 PM US Eastern Standard Time, jemcat@... writes: << I bet it's horrible to manage. Do let me know of anything you can as to how it developed, what kind of rash it caused etc. >> Jeanne, Tryny is allergic to laytex and at first it was a problem to manage as we didn't know exactly what contained laytex, but you learn fast. We got books and phamplets on products containing laytex and tried to eliminate most products that contain laytex from our house (but of course it is " impossible " to eliminate " all " as laytex is in carpets, paint, etc.) but we started with the obvious things such as toys (esp. pool toys, koosh balls, balloons etc) and then just hope that the unobvious (socks, panties, diapers, shoes etc) won't be a problem. As for Tryny's reaction, at the sight where the laytex touches him (especially bandaids, some tapes) the sight turns very red and then spreads. If prolonged exposer occurs, he swells up & turns red all over and has severe difficulty breathing. We have found that if we give him a neubulizer treatment right away it helps. The problrem with Tryny is tape and diapers ( Tryny has to be taped alot at night for the feeding tube to stay in place and not get wrapped around his neck - so we tape it accross his belly and down his leg - and his apnoea monitor has to be taped the same way). And diapers are bad ( Tryny now is in pull-ups and they don't seem to be as bad but it still effects him). It's just a constant struggle to watch for things containing laytex as almost everything does. Debra Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 1999 Report Share Posted June 22, 1999 <A HREF= " http://pweb.netcom.com/~nam1/latex_allergy.html " >Latex Allergy Links - Main Menu </A> http://pweb.netcom.com/~nam1/latex_allergy.html hi jeanne, lisa and everyone else i apologize for singling you (jeanne) out on the list...i didnt mean to offend anyone (not that i thought you took it that way :-)...and you are right, it HAS been too long since latex allergy came up on the list. i was going to send this privately but thought it was important to send it to the list as well. the link above should keep you busier than you ever wanted to be with this :-) yes, it is believed that repeated exposure to latex is what triggers the onset, and we know each exposure worsens the allergy. people have actually died. not to mention that it is such a life altering event that there are many places that michael cant go. for example, it is difficult to take him to even mcdonalds...in case there is a birthday party going on with latex balloons. for him, it is not just a site reaction...he is so sensitised to latex that if that balloon burst he could anaphalax. i carry an epi pen, and the school has one as well. even scarier yet are the UNIDENTIFIED or UNAVOIDABLE sources of latex....for example, rubber tires on a hot asphalt road in the summer often bother him. and dont be fooled into thinking that the " medical people " and hospitals know all about it and will make it safe--NOT! michael just had a little procedure done at the hospital, (needed the OR for anestesia) and what a fiasco! THREE nurses offered him a regular (non-latex free) bandaid for the iv site thinking they were being helpful. truthfully, i chastised all three of them, as they SHOULD know! we believe michael's allergies stem from repeated exposure to latex gloves...powdered especially. (the latex protien binds with the powder and allows it to become airborne, therefore inhaled). every therapist (feeding in particular) he has ever had insisted on gloving up...what did we know! he was hospitalized for the first nine months as well. i realize our situation sounds extreme, but its not. there are cases reported of children of nurses getting the allergy...because of repeated exposure to MOMS UNIFORM (bringing home latex dust from work on her person!). so now that i know, i try to caution people--and do it without sounding like an extremest! hope this explains a little more...perhaps you can find a silicone alternative to theratubing that accomplishes the same goals! kris mom to michael (6.5) CHaRGE and kolleen (3 mo) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 1999 Report Share Posted June 22, 1999 Regarding the latex allergies issue, I have a question...We have to tape Austin's ear molds to his ears to keep them in. We use plastic tape made by 3M or J & J, just like is used in hospitals. It is the only type that will hold them in and it is clear so it is less obvious. My question is, does anyone know if he can develop an allergy to this type of tape? And is plastic tape made of latex or have latex in it? I've thought about this before but never got around to asking it. Thanks for your answers. Jacque Clifton Austin's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 1999 Report Share Posted June 23, 1999 Jeanne, I believe it is the frequent exposure that causes it. Here is a line from the article I mentioned: " Patients with spina bifida, health care workers, workers in the rubber industry, atopic patients, and patients with multiple surgeries have been identified to be at a high risk for developing latex allergy. " I think our guys fall in that category! Mom to Kennedy 16 mos old CHARGEr, 9, 8, and wife to Graeme New Brunswick, Canada Visit the " Weir's homepage " at: http://www.geocities.com/SunsetStrip/Palms/5716 ICQ #1426476 > > >Kris > >Thank you for the wake up call! It's been a long time since latex allergies >were discussed here, and I had almost forgotten it was a threat to our >CHARGERs. I only had mentioned it as an afterthought. > >Is it that repeated exposure to latex causes the allergy? I guess I should >stop the theratubing, because although my kid doesn't have several CHARGE >features (like the colobomas or choanal atresia) she has just as many >surgeries and ER visits and admissions. So she has just as much exposure to >latex as the other CHARGErs. > >I bet it's horrible to manage. Do let me know of anything you can as to how >it developed, what kind of rash it caused etc. > >Jeanne mom to Caitlyn age 3 1/2yrs > > >------------------------------------------------------------------------ >How has ONElist changed your life? >Share your story with us at http://www.onelist.com >------------------------------------------------------------------------ >4th International CHARGE Syndrome Conference, Houston, Texas, July >23-25, 1999. >For information about the CHARGE Syndrome Foundation or to become a member please contact marion@.... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 1999 Report Share Posted June 23, 1999 Jacque, I don't know if the tape you are using is latex free, but I can give you what I have on which ones I know of to be latex free. Plastic, silk tape: Microfoam, Micropore { I use and like this kind}, Durapore, Transpore (3M) {we also use and like this}, Dermaclear, Dermicel, Waterproof {J & J}, Blenderm. I hope this helps! Mom to Kennedy 16 mos old CHARGEr, 9, 8, and wife to Graeme New Brunswick, Canada Visit the " Weir's homepage " at: http://www.geocities.com/SunsetStrip/Palms/5716 ICQ #1426476 >From: JClif222@... > >Regarding the latex allergies issue, I have a question...We have to tape >Austin's ear molds to his ears to keep them in. We use plastic tape made by >3M or J & J, just like is used in hospitals. It is the only type that will >hold them in and it is clear so it is less obvious. My question is, does >anyone know if he can develop an allergy to this type of tape? And is >plastic tape made of latex or have latex in it? > >I've thought about this before but never got around to asking it. Thanks for >your answers. > >Jacque Clifton >Austin's mom > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 1999 Report Share Posted June 23, 1999 's page that I listed yesterday has links on latex free tapes and medical; supplies and a whole bunch of regular everyday stuff you'd never realize has latex in it. Casey charge@... minnow@... Mom to Dawn 20, Ken 9 ADHD, and 7 CHARGE. Cobb California ICQ UIN# 728514 AIM Buddy List: ZeeCasey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 1999 Report Share Posted June 23, 1999 Jeanne, I know what you mean about making requests and having them not honored or even laughed at. Sometimes it helps to have some support information in making a request like this. As far as hospitals, there is at least one in Portland (a medium sized city) that has gone latex free. It is part of the Sisters of Providence network (a large network) and perhaps you could use that kind of information in your request. For example you could say: St. Hospital in Portland, OR, a Sisters of Providence Hospital has limited latex use for the safety of all. Weir has said her hospitals also have reduced or limited latex use. Perhaps there are many that we could list? The American Nurses Association's Official journal: AJN, ran an article in September of 1998 entitled: The Latex Threat. The article is written by Margaret Gritter, MS, RN, CS and the description of the article says: " A growing number of professionals and patients are developing latex allergy and hypersensitivity-with reactions ranging from rash to anaphylaxis. We are all at risk. " (She was referring to all nurses.) The author is a nursing supervisor at Kaiser Permanente Medical Center in California and the article was part of a course in continuing education (for nurses). The article states that " the National Institute for Occupational Safety and Health (NIOSH) recommends that -if- latex gloves are worn, they should be powder-free and low allergen because powder-free gloves are less likely than powdered ones to produce allergic reactions. For patients with latex allergy, a latex-free environment is essential. All health care facilities must have established policies and procedures regarding latex before a latex-allergic patient is admitted or a worker develops a latex allergy. " Apparently it is wise to check goves that say they are non-powdered because some may be powdered but not say that clearly in the packaging. The article also noted that many children's hospitals are starting to be latex-free. It looks like there is strong support for requesting latex-safe environments in the hospital. Mom to Kendra, 12 CHARGE, , 18 and Camille, 21 Portland, OR Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 1999 Report Share Posted June 23, 1999 Re: latex allergy Casey: I just wanted to say how awsome your finding of these web sites has been. I never found such a comprehensive list for latex allergy. This will really help as we are having greater difficulty in this area lately. Things are getting more serious with each exposure. All the other times you have found sites to make things so much easier for us.....thanks!!!! Ann > > > 's page that I listed yesterday has links on latex > free tapes and medical; supplies and a whole bunch of > regular everyday stuff you'd never realize has latex in it. > > > > Casey > charge@... > minnow@... > > Mom to Dawn 20, Ken 9 ADHD, and 7 CHARGE. > Cobb California > ICQ UIN# 728514 > AIM Buddy List: ZeeCasey > > > > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 1999 Report Share Posted June 23, 1999 In a message dated 6/23/99 1:36:11 AM Eastern Daylight Time, keedy@... writes: << The article states that " the National Institute for Occupational Safety and Health (NIOSH) recommends that -if- latex gloves are worn, they should be powder-free and low allergen because powder-free gloves are less likely than powdered ones to produce allergic reactions. For patients with latex allergy, a latex-free environment is essential. All health care facilities must have established policies and procedures regarding latex before a latex-allergic patient is admitted or a worker develops a latex allergy. " Apparently it is wise to check goves that say they are non-powdered because some may be powdered but not say that clearly in the packaging. >> what a contradiction of terms! IF you feel like killing yourself today only wear powder free gloves...it may take a little longer, but HEY, NIOSH said its ok. and you wonder why i have to be diligent about latex exposure! this just reiterates my previous email...even the professionals dont always do the right thing! and FYI, all shriners are latex free. kris mom to michael (6.5) CHaRGE and kolleen (3 mo) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 1999 Report Share Posted June 23, 1999 Jeanne, I think the patches that Kennedy uses are latex free, they are " Opticlude " by 3M, they say " hypoallergenic adhesive " . Her band for her glasses I'm not sure about, the ends don't look like rubber, but I better check. All this stuff you don't think about! Mom to Kennedy 16 mos old CHARGEr, 9, 8, and wife to Graeme New Brunswick, Canada Visit the " Weir's homepage " at: http://www.geocities.com/SunsetStrip/Palms/5716 ICQ #1426476 > > >Debra Kris and others > >Thank you so much for the latex info, I immediately checked out the website >that Casey supplied earlier and will look into these as well. > >I can't remember the exact words but under " Who's at High Risk " it mentioned >kids who've had at least 9 surgeries (I think that was the number). Caitlyn >far exceeds that! Plus I've put a patch on her eye almost every day of half >of her life. Plus her eyeglasses have wraparound cables which are RUBBER! >I thought a gluten allergy would be difficult but this is horrific! > >My heart goes out to those of you already dealing with this but my question >now goes out to the rest of you CHARGE parents. Have you thought about >taking steps to try to prevent this? I think I would go crazy and the >hospital and school would think I was crazy if I insisted that they use >latex free products whenever possible to avoid a potential life-threatening >allergy developing. They already think I'm nuts with my requests. > >A request like this would be so difficult to carry through, is it something >that any of you have implemented or are planning to implement? What >resistance have you met? It just gets harder and harder each day with all >these issues mounting up doesn't it? > >Jeanne > > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 1999 Report Share Posted June 23, 1999 Hi , Thanks for the info. How did you find out these tapes were latex free? I think we use Transpore (3M). It is clear plastic with a waffle texture. Does this sound right? I'm not sure I've used the kind you do. I have used the paper, silky and plastic from 3M though. Jacque Clifton Austin's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 1999 Report Share Posted June 23, 1999 I agree that the latex issue is scary. I am going to ask the speech therapists and school paras to stop using latex gloves with powder and look for silicone or something. I have heard of a school in Wichita that had to replace its gym floor due to a child having latex allergies. The family had a battle I'm sure but they got it done. I don't know of a place that would do it preventatively though. Jacque Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 1999 Report Share Posted June 23, 1999 I asked you once not to send me any more Charge stuff. Please don't make me keep asking. I don't want any more info. Thanks, kel1018 > >Reply-To: CHARGEonelist >To: chargeonelist >Subject: latex allergy >Date: Tue, 22 Jun 1999 19:52:09 PDT > > > >Debra Kris and others > >Thank you so much for the latex info, I immediately checked out the website >that Casey supplied earlier and will look into these as well. > >I can't remember the exact words but under " Who's at High Risk " it >mentioned >kids who've had at least 9 surgeries (I think that was the number). >Caitlyn >far exceeds that! Plus I've put a patch on her eye almost every day of >half >of her life. Plus her eyeglasses have wraparound cables which are RUBBER! >I thought a gluten allergy would be difficult but this is horrific! > >My heart goes out to those of you already dealing with this but my question >now goes out to the rest of you CHARGE parents. Have you thought about >taking steps to try to prevent this? I think I would go crazy and the >hospital and school would think I was crazy if I insisted that they use >latex free products whenever possible to avoid a potential life-threatening >allergy developing. They already think I'm nuts with my requests. > >A request like this would be so difficult to carry through, is it something >that any of you have implemented or are planning to implement? What >resistance have you met? It just gets harder and harder each day with all >these issues mounting up doesn't it? > >Jeanne > > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 1999 Report Share Posted June 23, 1999 , Interesting article... too bad the Kaiser in Santa hasn't read it... they are no way NEAR cutting down on latex.. heck they even have toys in the peds clinics that are full of latex LOL May have to get a copy and send it to the head of peds there.. Casey charge@... minnow@... Mom to Dawn 20, Ken 9 ADHD, and 7 CHARGE. Cobb California ICQ UIN# 728514 AIM Buddy List: ZeeCasey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 1999 Report Share Posted June 23, 1999 Another thing that jut popped into my head when said something about Kennedy's band for her glasses... With so many of our kids wearing hearing aids.. what about the ear molds ???? Aari's are silicone, which BTW I absolutely love... but what about the typical ones ??? Casey charge@... minnow@... Mom to Dawn 20, Ken 9 ADHD, and 7 CHARGE. Cobb California ICQ UIN# 728514 AIM Buddy List: ZeeCasey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 1999 Report Share Posted June 24, 1999 Jacque, The information came from the Latex Allergy article I mentioned that my ped gave me to read. The tape you are describing is the right one. The Micropore by 3M is like the papery one. I find this one sticks really well but it's a pain in the patootey to get off!!! But, lil Miss Kennedy got it off last night and we had a 420ml Vivonex MESS in her bed, down the side of her bed, in the grooves of her bed, on the wall, on the floor and every place you can imagine this morning! Yippeee!!! Mom to Kennedy 16 mos old CHARGEr, 9, 8, and wife to Graeme New Brunswick, Canada Visit the " Weir's homepage " at: http://www.geocities.com/SunsetStrip/Palms/5716 ICQ #1426476 >From: JClif222@... > >Hi , > >Thanks for the info. How did you find out these tapes were latex free? I >think we use Transpore (3M). It is clear plastic with a waffle texture. >Does this sound right? I'm not sure I've used the kind you do. I have used >the paper, silky and plastic from 3M though. > >Jacque Clifton >Austin's mom > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 1999 Report Share Posted June 24, 1999 Kennedy's got the silicone ones, they are clear looking. Another thing that jut popped into my head when said something about Kennedy's band for her glasses... With so many of our kids wearing hearing aids.. what about the ear molds ???? Aari's are silicone, which BTW I absolutely love... but what about the typical ones ??? Casey charge@... minnow@... Mom to Dawn 20, Ken 9 ADHD, and 7 CHARGE. Cobb California ICQ UIN# 728514 AIM Buddy List: ZeeCasey --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 1999 Report Share Posted June 24, 1999 , Can blame it on Graeme.. cause I know he's the one that hooked her up last night ;-) Casey charge@... minnow@... Mom to Dawn 20, Ken 9 ADHD, and 7 CHARGE. Cobb California ICQ UIN# 728514 AIM Buddy List: ZeeCasey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 1999 Report Share Posted June 25, 1999 Casey, You are right Graeme did hook her up last night, but I hooked her up last night, and wham-o, another big mess! I'm so sick and bloody tired of these darn overnight feeds {or messes I should say!}. I guess it's back to taping her up like a mummy, which breaks her skin out terribly. And, we've tried every tape created I'm sure. ARGH!! She's even pulling it out during the daily boluses now. I actually tapped her hand today and said " no, no Kennedy " really firmly to her. {I think this was her first no-no} and she looked up at me, smiled and started tapping the back of her hand and shaking her head no-no. It was hilarious, I couldn't help but laugh, what a kid. Mom to Kennedy 16 mos old CHARGEr, 9, 8, and wife to Graeme New Brunswick, Canada Visit the " Weir's homepage " at: http://www.geocities.com/SunsetStrip/Palms/5716 ICQ #1426476 , Can blame it on Graeme.. cause I know he's the one that hooked her up last night ;-) Casey charge@... minnow@... Mom to Dawn 20, Ken 9 ADHD, and 7 CHARGE. Cobb California ICQ UIN# 728514 AIM Buddy List: ZeeCasey --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 1999 Report Share Posted June 25, 1999 , What about the IV netting stuff (or the tubing stuff they put on for casts) ? It comes in different diameters.. could get one size for her chest and tummy and then the other for down her leg.. could mummify her that way without tape Casey charge@... minnow@... Mom to Dawn 20, Ken 9 ADHD, and 7 CHARGE. Cobb California ICQ UIN# 728514 AIM Buddy List: ZeeCasey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 1999 Report Share Posted June 25, 1999 In a message dated 6/24/99 7:52:31 PM US Eastern Standard Time, gweir@... writes: << and wham-o, another big mess! I'm so sick and bloody tired of these darn overnight feeds {or messes I should say!}. I guess it's back to taping her up like a mummy, which breaks her skin out terribly. And, we've tried every tape created I'm sure. >> , I know how you feel ( and we've been doing the taping for 5 years now)....... Have you tried cutting the " foot " part off of a long tube sock, and using the " tube " part of the sock. You pull the " tube " part of the sock up from the bottom and put it around her belly (with the feeding tube plugged in). It helps keep the tube from coming out and from being pulled out so easily. We used it on Tryny when he was little ( we still taped the tubing down his leg so that it wouldn't get wrapped around his neck). We have used a lot of " inovative " ways to secure that " darned " tube. Debra Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 1999 Report Share Posted June 25, 1999 In a message dated 6/24/99 8:53:13 PM US Eastern Standard Time, charge@... writes: << What about the IV netting stuff >> Tried that and it's " worse " than tape on Tryny. Just thought I'd let everyone know. Debra Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 1999 Report Share Posted June 26, 1999 Casey, Sounds like a really good idea, I'll ask my medical supplier on Monday! {gosh I love this list!!!} Mom to Kennedy 16 mos old CHARGEr, 9, 8, and wife to Graeme New Brunswick, Canada Visit the " Weir's homepage " at: http://www.geocities.com/SunsetStrip/Palms/5716 ICQ #1426476 , What about the IV netting stuff (or the tubing stuff they put on for casts) ? It comes in different diameters.. could get one size for her chest and tummy and then the other for down her leg.. could mummify her that way without tape Casey charge@... minnow@... Mom to Dawn 20, Ken 9 ADHD, and 7 CHARGE. Cobb California ICQ UIN# 728514 AIM Buddy List: ZeeCasey --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 1999 Report Share Posted June 26, 1999 Debra, Thanks for the hint, I might try that for the weekend, til I can call up my medical supplier on Monday and see about that netting stuff that Casey mentioned. I tried a leg of a panty hose, but it didn't really work for me. Mom to Kennedy 16 mos old CHARGEr, 9, 8, and wife to Graeme New Brunswick, Canada Visit the " Weir's homepage " at: http://www.geocities.com/SunsetStrip/Palms/5716 ICQ #1426476 >From: DW33333333@... > >In a message dated 6/24/99 7:52:31 PM US Eastern Standard Time, >gweir@... writes: > ><< and wham-o, another big mess! I'm so sick and bloody tired of these > darn overnight feeds {or messes I should say!}. I guess it's back to taping > her up like a mummy, which breaks her skin out terribly. And, we've tried > every tape created I'm sure. >> > >, > >I know how you feel ( and we've been doing the taping for 5 years now)....... > Have you tried cutting the " foot " part off of a long tube sock, and using >the " tube " part of the sock. You pull the " tube " part of the sock up from >the bottom and put it around her belly (with the feeding tube plugged in). >It helps keep the tube from coming out and from being pulled out so easily. >We used it on Tryny when he was little ( we still taped the tubing down his >leg so that it wouldn't get wrapped around his neck). >We have used a lot of " inovative " ways to secure that " darned " tube. > >Debra > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 1999 Report Share Posted June 26, 1999 In the immortal words of Homer Simpson - " D'OH!!!! " That means it'll probably be tough on Kennedy's sensitive skin too...argh! Mom to Kennedy 16 mos old CHARGEr, 9, 8, and wife to Graeme New Brunswick, Canada Visit the " Weir's homepage " at: http://www.geocities.com/SunsetStrip/Palms/5716 ICQ #1426476 ><< What about the IV netting stuff >> > >Tried that and it's " worse " than tape on Tryny. Just thought I'd let >everyone know. > >Debra > >--------------------------- Quote Link to comment Share on other sites More sharing options...
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