Guest guest Posted May 31, 1999 Report Share Posted May 31, 1999 Marea- Welcome to the list! My daughter is only 18 mos old so I haven't encountered the night troubles that you have with Ellen yet, but what about a portable urinal? If Ellen is able to wake up enough to know that she has to go to the bathroom, they make a portable urinal that looks almost like a tall, thin pitcher. My grandma is confined to a wheelchair and she uses one of these at night. They are a cleaner, easier solution to a bedpan. No one has to help my grandma with hers. Would Ellen be able to use one by herself, or would you still need to help her? That's the only solution that I have - this is a tough one! Hope someone else has a fabulous idea! Amy - wife to mom to (2 1/2) and (18 mos) CHaRgE Atlanta, GA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 1999 Report Share Posted May 31, 1999 Here's a helpful hint for all you fellow " nightly pump " feeders: I tape the tubing on Tryny i.e.... I crisscross the tape over the button, then put a piece of tape on his side, and 3 or 4 down his leg to the knee. This helps to keep the tubing in place while he rolls around ( and I have the pump right beside his bed at about the middle). Hopes this helps as I know how frustrating it is to wake up with your child covered in milk. Debra Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 1999 Report Share Posted May 31, 1999 Marea Howe wrote: > > > > Hi to you all, > I'm a new subscriber from Australia. We have a 13year old daughter, Ellen > who is pretty severly affected by the various facets of CHARGE, but copes > so cheerfully and bravely with multiple problems she keeps us going too. > > One problem we have which is a real pain is night incontinence. Ellen is > totally tube and intravenously fed and gets most of her fluids overnight. > No matter how many nappies I use and how frequently i change her, the bed > is still soaked every morning and we all know how much fun that extra load > of washing is. What do others do about this? She is pretty well confined to > a wheelchair and I find getting her up to toilet her is hard although not > a problem during the day as she is continent then. > If worst comes to worst I can always use a bedpan, but this is yet another > thing to do during the night when i'd like to be sleeping. > > Cheers, > Marea, mother of Ellen 13 and Dave 16, husband Maurie. > Marea, Welcome, I can't help you out with this problem, my daughters only one, but I'd love to hear your families " story " if you ever have time. What have Ellens' major obstacles been and how did she overcome them? How has your family coped for the past 13 years? Sorry to bombard you with questions, I always love to hear the older CHARGErs' stories. Jeanie Colp mom to MacKenzie 1yr. CHARGE, Tyler 7, & Zachary 4 Nova Scotia, Canada Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 1999 Report Share Posted May 31, 1999 Marea, Hi there, welcome to the list! I can't offer you any help with your night problems as my daughter is only 16 months old, but I feel for you, as Kennedy disconnects her feeding tube alot and gets her night feeds all over the bed. Fun fun... Anyway, hope you get some answers and hope you enjoy the list! Mom to Kennedy 15 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 1999 Report Share Posted May 31, 1999 In a message dated 5/30/99 10:13:28 PM Eastern Daylight Time, marea@... writes: << No matter how many nappies I use and how frequently I change her, the bed is still soaked every morning and we all know how much fun that extra load of washing is. What do others do about this? >> Marea, Welcome to the list! My Destiny has Charge and tube fed at night still. She is newly potty trained during the day, but wears diapers at night. She receives a lot of fluid via the g-tube in the evening and before I go to bed so I have to put a diaper insert in her diaper. It is a pad that looks like a big Kotex (like you use for your period) that goes right into the diaper, but does not have the backing. The idea is the urine goes through the pad, into the diaper and fills from the bottom up. The good inserts can be like adding another diaper to the existing one. Sometimes when Destiny gets a lot of fluid on board close to bedtime I put 2 inserts in the diaper to absorb all the urine. The best part are dry mornings and less laundry!! In the States we can buy inserts at most, but not all, grocery stores. They are found in the diaper section and the best one I've found is made by Fitti. The best, most consistent, place to find the inserts are the medical supply stores where you get your diapers. It takes a lot of explaining, but once they understand your needs, you can usually get what you want. Also, the Fitti inserts are smaller and the medical supply places stock the bigger ones. Marea, or anybody else, if you have any questions about what I am trying to describe, ask, and if we still cannot get a meeting of minds I can send you a sample. I love these inserts and they have saved me many morning headaches! Good Luck! (Destiny 6 CHARgE, Zachary 4) NYC Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 1999 Report Share Posted May 31, 1999 Hi Marea, Welcome to the list. Great to hear from you and about Ellen. I just got an email from Rob Last. How are you all coping in Sydney without him? Regarding your question, is still not toilet trained. But he is sometimes dry in the morning, if we give him his last feeling before 7:00 pm. If it is after, he is likely to be soaked in the morning. If we had to feed him all night, I can imagine we'd have the same difficulty you face. I do know that there are diaper liners you can put in that make them last longer, but there is still only so much it can hold. Cheers, Tim Marea Howe wrote: > > > Hi to you all, > I'm a new subscriber from Australia. We have a 13year old daughter, > Ellen > who is pretty severly affected by the various facets of CHARGE, but > copes > so cheerfully and bravely with multiple problems she keeps us going > too. > > One problem we have which is a real pain is night incontinence. Ellen > is > totally tube and intravenously fed and gets most of her fluids > overnight. > No matter how many nappies I use and how frequently i change her, the > bed > is still soaked every morning and we all know how much fun that extra > load > of washing is. What do others do about this? She is pretty well > confined to > a wheelchair and I find getting her up to toilet her is hard although > not > a problem during the day as she is continent then. > If worst comes to worst I can always use a bedpan, but this is yet > another > thing to do during the night when i'd like to be sleeping. > > Cheers, > Marea, mother of Ellen 13 and Dave 16, husband Maurie. > > ------------------------------------------------------ > ----------------- > With more than 17 million e-mails exchanged daily... > http://www.onelist.com > ...ONElist is THE place where the world talks! > ---------------------------------------------- > ------------------------- > 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 1, 1999 Report Share Posted June 1, 1999 Hi, I'm also from Australia. I joined this list because I care for an 11year old boy at weekends through the organisation Interchange. was tube fed for a long period of his life, and did not walk till quite late ( I think he was six or seven). He is totally deaf and has autism as well. He does not have heart problems, but he has both kidneys on one side, and had chronic reflux until recently. He seems to have very good eyesight, but is light sensitive. His Mum was happy for me to join the list because I have internet access at work, and she does not have a computer. I adore Sam, and we have lots of fun together. My signing is pretty terrible, and Sam's is quite good-so we have some laughs about communication. One day I'm was trying to sign that his Mum was coming to pick him up to go to the beach-and I inadvertently signed that we were going for a camel ride. Of course when his Mum arrived he asked where the camels were. I had to do a lot of apologising. Sam does not drink very much (you actually have to remind him to drink)-but he is incontinent at night (and a bit during the day). It's a mystery to me where all the fluid comes from!!! I'd love to hear from you. I print out bits and pieces for Sam's Mum too. We're from . Cheers, Kate----- Original Message----- From: Marea Howe [sMTP:marea@...] Sent: Monday, May 31, 1999 12:16 PM To: CHARGEonelist Subject: CHARGE Hi to you all, I'm a new subscriber from Australia. We have a 13year old daughter, Ellen who is pretty severly affected by the various facets of CHARGE, but copes so cheerfully and bravely with multiple problems she keeps us going too. One problem we have which is a real pain is night incontinence. Ellen is totally tube and intravenously fed and gets most of her fluids overnight. No matter how many nappies I use and how frequently i change her, the bed is still soaked every morning and we all know how much fun that extra load of washing is. What do others do about this? She is pretty well confined to a wheelchair and I find getting her up to toilet her is hard although not a problem during the day as she is continent then. If worst comes to worst I can always use a bedpan, but this is yet another thing to do during the night when i'd like to be sleeping. Cheers, Marea, mother of Ellen 13 and Dave 16, husband Maurie. ------------------------------------------------------------------------ With more than 17 million e-mails exchanged daily... http://www.onelist.com ...ONElist is THE place where the world talks! ------------------------------------------------------------------------ 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 1, 1999 Report Share Posted June 1, 1999 Debra, I never thought of putting the pump down beside the bed in the middle, it was always up at the head of her bed. Worth a try!! Thanks... Mom to Kennedy 15 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@... > >Here's a helpful hint for all you fellow " nightly pump " feeders: > >I tape the tubing on Tryny i.e.... I crisscross the tape over the button, >then put a piece of tape on his side, and 3 or 4 down his leg to the knee. >This helps to keep the tubing in place while he rolls around ( and I have the >pump right beside his bed at about the middle). Hopes this helps as I know >how frustrating it is to wake up with your child covered in milk. > >Debra > >------------------------------------------------------------------------ >ONElist members are using Shared Files in great ways! >http://www.onelist.com >Are you? If not, see our homepage for details. >------------------------------------------------------------------------ >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 1, 1999 Report Share Posted June 1, 1999 Hi Tim, Good to hear from you. As you can imagine we all really miss Rob, but I talk to him frequently. he is going to Houston with williams so if you're there, you'll see him. Hope things are going ok for you all. We are having a pretty hairy time with Ellen. She has just had a 7 month stint in hospital and is going in again tommorrow for some gut surgery. Developmentally she is wonderful though, reading age appropriately and developing a real teenager's attitude to Mum etc. Hope to hear more from you Tim. Cheers, Marea ---------- > > To: CHARGEonelist > Subject: Re: CHARGE > Date: Tuesday, 1 June 1999 4:16 > > > > Hi Marea, > > Welcome to the list. Great to hear from you and about Ellen. I just > got an email from Rob Last. How are you all coping in Sydney without > him? > > Regarding your question, is still not toilet trained. But he is > sometimes dry in the morning, if we give him his last feeling before > 7:00 pm. If it is after, he is likely to be soaked in the morning. If > we had to feed him all night, I can imagine we'd have the same > difficulty you face. I do know that there are diaper liners you can put > in that make them last longer, but there is still only so much it can > hold. > > Cheers, > Tim > > Marea Howe wrote: > > > > > > > Hi to you all, > > I'm a new subscriber from Australia. We have a 13year old daughter, > > Ellen > > who is pretty severly affected by the various facets of CHARGE, but > > copes > > so cheerfully and bravely with multiple problems she keeps us going > > too. > > > > One problem we have which is a real pain is night incontinence. Ellen > > is > > totally tube and intravenously fed and gets most of her fluids > > overnight. > > No matter how many nappies I use and how frequently i change her, the > > bed > > is still soaked every morning and we all know how much fun that extra > > load > > of washing is. What do others do about this? She is pretty well > > confined to > > a wheelchair and I find getting her up to toilet her is hard although > > not > > a problem during the day as she is continent then. > > If worst comes to worst I can always use a bedpan, but this is yet > > another > > thing to do during the night when i'd like to be sleeping. > > > > Cheers, > > Marea, mother of Ellen 13 and Dave 16, husband Maurie. > > > > ------------------------------------------------------ > > ----------------- > > With more than 17 million e-mails exchanged daily... > > http://www.onelist.com > > ...ONElist is THE place where the world talks! > > ---------------------------------------------- > > ------------------------- > > 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@.... > > > > > ------------------------------------------------------------------------ > ONElist: where the world talks! > http://www.onelist.com > Join a new list today. > ------------------------------------------------------------------------ > 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 1, 1999 Report Share Posted June 1, 1999 Dear Jeanie, To tell you how we coped over the last 13, nearly 14 years would take a book or 2 I think. If you are going to the Houston conference, look up Rob Last. Rob was Ellen's teacher of the deaf/blind for many years and is still one of our dearest friends. he is an absolute fund of information on the whole area and is especially wonderful on communication and coping issues although he's too modest to say this himself. Ellen is physically pretty affected by CHARGE I guess. She is severly/profoundly deaf, legally blind with colobomas and hypertrophy of the optic nerves. She has major balance problems due to malformation of her inner ears and when well manages to get around on a walker. For long trips or when she is not so well she uses a wheelchair. this seems permanent. She did not walk till she was 7 and has had many stress fractures due to osteoporosis. presently has a crush fracture of her L5 vertebra which is giving her lots of pain. (Hint..make sure your doctors check for osteoporosis as your kids get older. This is becoming a bit of an issue for the older kids in Australia and has only been recognised as a problem quite recently). Ellen's heart is ok. She has a cleft lip and palate which have been well repaired. Her major problem is reflux and lack of bowel motility. This has become so severe that we are now unable to feed her normally at all. She has a gastrostomy which drains into a bag as she can't manage her stomach secretions, a jejunostomy into which we feed her small quantities of formula and fairly recently she has come home from hospital on intravenous nutrition, which is a whole new set of problems in itself. Having said all the above though, I can say that ellen has high intelligence. She is doing age appropriate work at hospital school loves to read and write and looks forward to going to Paris so that she can hit the fashion shops as she has a highly developed fashion sense. She says she will be a jeweller when she grows up and i believe her as her will is strong enough for her to do almost anything she sets her mind too. This is in a kid we were told would be a vegetable. So don't give up ...you never know what's round the corner. Cheers, Marea Howe ---------- > > To: CHARGEonelist > Subject: Re: CHARGE > Date: Monday, 31 May 1999 23:34 > > From: toby.c@... (Toby Colp) > > Marea Howe wrote: > > > > > > > > Hi to you all, > > I'm a new subscriber from Australia. We have a 13year old daughter, Ellen > > who is pretty severly affected by the various facets of CHARGE, but copes > > so cheerfully and bravely with multiple problems she keeps us going too. > > > > One problem we have which is a real pain is night incontinence. Ellen is > > totally tube and intravenously fed and gets most of her fluids overnight. > > No matter how many nappies I use and how frequently i change her, the bed > > is still soaked every morning and we all know how much fun that extra load > > of washing is. What do others do about this? She is pretty well confined to > > a wheelchair and I find getting her up to toilet her is hard although not > > a problem during the day as she is continent then. > > If worst comes to worst I can always use a bedpan, but this is yet another > > thing to do during the night when i'd like to be sleeping. > > > > Cheers, > > Marea, mother of Ellen 13 and Dave 16, husband Maurie. > > > Marea, > Welcome, I can't help you out with this problem, my daughters only > one, but I'd love to hear your families " story " if you ever have time. > What have Ellens' major obstacles been and how did she overcome them? > How has your family coped for the past 13 years? Sorry to bombard you > with questions, I always love to hear the older CHARGErs' stories. > > Jeanie Colp > mom to MacKenzie 1yr. CHARGE, Tyler 7, & Zachary 4 > Nova Scotia, Canada > > ------------------------------------------------------------------------ > What do lizards and rock music have in common? > http://www.onelist.com > They both have communities at ONElist. Find yours today! > ------------------------------------------------------------------------ > 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 1, 1999 Report Share Posted June 1, 1999 When Aubrie was tube fed overnight, we taped the tube in her diaper tape. That kept it from pulling at her belly while she rolled around etc. She only rarely got disconnected and leaked all over. I think Debra's tape job sounds quite effective. Another person somewhere along the way said they put the tube down the child's pj leg. We did the same -- with it coming out the last snap at the bottom or a slit cut in those blanket sleepers. That wouldn't work as well in the hot weather when pjs don't cover as much... Michele mom to Aubrie (18 mos) CHaRgE and (7yrs), wife to DJ, in IL westml@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 1999 Report Share Posted June 2, 1999 >Developmentally she is wonderful >though, reading age appropriately and developing a real teenager's attitude >to Mum etc. >Cheers, >Marea Marea, This is so encouraging for me! I feel like Kennedy's getting " bad " {like, regular kid bad lately} and it's great... I hope she continues on, not getting bad, but having her own " attitude " etc.. Mom to Kennedy 15 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 1999 Report Share Posted June 2, 1999 Marea Howe wrote: > > > > Dear Jeanie, > > To tell you how we coped over the last 13, nearly 14 years would take a > book or 2 I think. If you are going to the Houston conference, look up Rob > Last. Rob was Ellen's teacher of the deaf/blind for many years and is still > one of our dearest friends. he is an absolute fund of information on the > whole area and is especially wonderful on communication and coping issues > although he's too modest to say this himself. > > Ellen is physically pretty affected by CHARGE I guess. She is > severly/profoundly deaf, legally blind with colobomas and hypertrophy of > the optic nerves. She has major balance problems due to malformation of her > inner ears and when well manages to get around on a walker. For long trips > or when she is not so well she uses a wheelchair. this seems permanent. She > did not walk till she was 7 and has had many stress fractures due to > osteoporosis. presently has a crush fracture of her L5 vertebra which is > giving her lots of pain. (Hint..make sure your doctors check for > osteoporosis as your kids get older. This is becoming a bit of an issue for > the older kids in Australia and has only been recognised as a problem quite > recently). > > Ellen's heart is ok. She has a cleft lip and palate which have been well > repaired. Her major problem is reflux and lack of bowel motility. This has > become so severe that we are now unable to feed her normally > at all. She has a gastrostomy which drains into a bag as she can't manage > her stomach secretions, a jejunostomy into which we feed her small > quantities of formula and fairly recently she has come home from hospital > on intravenous nutrition, which is a whole new set of problems in itself. > > Having said all the above though, I can say that ellen has high > intelligence. She is doing age appropriate work at hospital school loves to > read and write and looks forward to going to Paris so that she can hit the > fashion shops as she has a highly developed fashion sense. She says she > will be a jeweller when she grows up and i believe her as her will is > strong enough for her to do almost anything she sets her mind too. This is > in a kid we were told would be a vegetable. So don't give up ...you never > know what's round the corner. > > Cheers, > Marea Howe Marea, Ellen sounds like a joy! Interestingly, my daughter has many of the same issues, reflux being the major one at this point. MacKenzie has a g-tube for drainage & j-tube for feeds. This worked well for the last 6 months but is failing now. It seems that any small amount of secretions left in her stomach are being refluxed and aspirated. I am downhearted to know that this is still a major problem for Ellen, we've been hoping MacKenzie will grow out of this before major intervention needs to take place. She's being assessed for a fundo but because of her anatomy hasn't been a candidate in the past. Let me know if you have any words of wisdom on this subject. Jeanie & MacKenzie Colp Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 1999 Report Share Posted June 10, 1999 Grahame and , I'm glad that you find it encouraging. We were certainly told quite emphatically that ellen would be a vegetable but knew from early on that this was not the case. I think it's just a matter of wait and see and most importantly not treating the kid like a vegie. If you treat a child as if he/she is retarded then you're likely to get a retarded kid or at least a more delayed one than you otherwise would have had. Cheers, Marea ---------- > > To: CHARGEonelist > Subject: Re: CHARGE > Date: Wednesday, 2 June 1999 9:44 > > > > > >Developmentally she is wonderful > >though, reading age appropriately and developing a real teenager's attitude > >to Mum etc. > >Cheers, > >Marea > > Marea, > This is so encouraging for me! I feel like Kennedy's getting " bad " {like, > regular kid bad lately} and it's great... I hope she continues on, not > getting bad, but having her own " attitude " etc.. > > Mom to Kennedy 15 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 > > > ------------------------------------------------------------------------ > Looking for a new hobby? Want to make a new friend? > http://www.onelist.com > Come join one of nearly 160,000 e-mail communities at ONElist! > ------------------------------------------------------------------------ > 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 10, 1999 Report Share Posted June 10, 1999 Dear Jeanie, Sorry I probably don't have any words of wisdom for you as Ellen's problem has become worse over the years and will continue to do so according to the doctors and my experience. However that said I can say that Ellen is much better if we drain her stomach 24 hours a day; ie she has a drainage bag constantly attached to her g-tube. If we don't do this, she is vomiting within 20 minutes or so. Also, regular acupuncture from a good practitioner helps her reflux and as MacKenzie is smaller than Ellen was when she started, might be of real benefit to her in the long term. Japanese style is better than Chinese if you can find it as they do not needle so hard and it is not painful. Ellen has had 2 fundos neither of which has held so don't place your hopes on one. Presumably you are on all the usual anti reflux medications. good luck with it. if I can think of anything else i'll let you know. Marea ---------- > > To: CHARGEonelist > Subject: Re: CHARGE > Date: Wednesday, 2 June 1999 23:52 > > From: toby.c@... (Toby Colp) > > Marea Howe wrote: > > > > > > > > Dear Jeanie, > > > > To tell you how we coped over the last 13, nearly 14 years would take a > > book or 2 I think. If you are going to the Houston conference, look up Rob > > Last. Rob was Ellen's teacher of the deaf/blind for many years and is still > > one of our dearest friends. he is an absolute fund of information on the > > whole area and is especially wonderful on communication and coping issues > > although he's too modest to say this himself. > > > > Ellen is physically pretty affected by CHARGE I guess. She is > > severly/profoundly deaf, legally blind with colobomas and hypertrophy of > > the optic nerves. She has major balance problems due to malformation of her > > inner ears and when well manages to get around on a walker. For long trips > > or when she is not so well she uses a wheelchair. this seems permanent. She > > did not walk till she was 7 and has had many stress fractures due to > > osteoporosis. presently has a crush fracture of her L5 vertebra which is > > giving her lots of pain. (Hint..make sure your doctors check for > > osteoporosis as your kids get older. This is becoming a bit of an issue for > > the older kids in Australia and has only been recognised as a problem quite > > recently). > > > > Ellen's heart is ok. She has a cleft lip and palate which have been well > > repaired. Her major problem is reflux and lack of bowel motility. This has > > become so severe that we are now unable to feed her normally > > at all. She has a gastrostomy which drains into a bag as she can't manage > > her stomach secretions, a jejunostomy into which we feed her small > > quantities of formula and fairly recently she has come home from hospital > > on intravenous nutrition, which is a whole new set of problems in itself. > > > > Having said all the above though, I can say that ellen has high > > intelligence. She is doing age appropriate work at hospital school loves to > > read and write and looks forward to going to Paris so that she can hit the > > fashion shops as she has a highly developed fashion sense. She says she > > will be a jeweller when she grows up and i believe her as her will is > > strong enough for her to do almost anything she sets her mind too. This is > > in a kid we were told would be a vegetable. So don't give up ...you never > > know what's round the corner. > > > > Cheers, > > Marea Howe > > > Marea, > Ellen sounds like a joy! Interestingly, my daughter has many of the > same issues, reflux being the major one at this point. MacKenzie has a > g-tube for drainage & j-tube for feeds. This worked well for the last 6 > months but is failing now. It seems that any small amount of secretions > left in her stomach are being refluxed and aspirated. I am downhearted > to know that this is still a major problem for Ellen, we've been hoping > MacKenzie will grow out of this before major intervention needs to take > place. She's being assessed for a fundo but because of her anatomy > hasn't been a candidate in the past. Let me know if you have any words > of wisdom on this subject. > > Jeanie & MacKenzie Colp > > ------------------------------------------------------------------------ > Looking to expand your world? > http://www.onelist.com > ONElist has nearly 160,000 e-mail communities from which to chose! > ------------------------------------------------------------------------ > 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 13, 1999 Report Share Posted June 13, 1999 Marea Howe wrote: > > > > Dear Jeanie, > Sorry I probably don't have any words of wisdom for you as Ellen's problem > has become worse over the years and will continue to do so according to the > doctors and my experience. However that said I can say that Ellen is much > better if we drain her stomach 24 hours a day; ie she has a drainage bag > constantly attached to her g-tube. If we don't do this, she is vomiting > within 20 minutes or so. Also, regular acupuncture from a good practitioner > helps her reflux and as MacKenzie is smaller than Ellen was when she > started, might be of real benefit to her in the long term. Japanese style > is better than Chinese if you can find it as they do not needle so hard and > it is not painful. Ellen has had 2 fundos neither of which has held so > don't place your hopes on one. Presumably you are on all the usual anti > reflux medications. > good luck with it. if I can think of anything else i'll let you know. > Marea > Marea, I don't know how you do it, this problem is making me crazy. Yes, MacKenzie is on all the meds., and has just started Prilosec, again, so we are hoping it may make a difference. She is j-tube fed and drained 24/7 with the g-tube, but apparently there's enough secretions left to reflux. I'm not sure why, but I have a bad feeling about a Nissen. I guess it may be the reasonable next step though. Isn't there a procedure where the stomach is seperated from the esophagus, making reflux impossible? Have you tried anything like that with Ellen? Have the doctors given you any " reason " as to why she has never outgrown this or is it just one of those CHARGE things? Does it bother Ellen to be " hooked " up most of the time? Thanks for the reply. Jeanie Colp mom to MacKenzie 1yr. CHARGE, Tyler 7, & Zachary 4 Nova Scotia, Canada Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 1999 Report Share Posted June 15, 1999 Dear Jeanie, I agree with you, it's a real and constant problem. Ellen does still reflux with all the meds and the drainage etc. She also refluxes up frpm the jejunum into the stomach when she feels like it! I would never agree to a stomach separation as this would make her into a tof (ie all her saliva would be drained pout a hole in the neck as I understand it.). Quality of life has to come in somewhere. Last night she started to reflux up blood with no apparent source again so we are seeing the doctor today. It doesn't bother her being hooked up most of the time as she is not very mobile anyway and we have a very small portable pump which fits into the back of her wheelchair or walker. The doctors haver no idea why her reflux is so bad and can't even say whether it's a " CHARGE " thing or not. May or may not be. Good luck. If I find anythingf else useful, I'll let you know. Cheers, Marea ---------- > > To: CHARGEonelist > Subject: Re: CHARGE > Date: Sunday, 13 June 1999 23:09 > > From: toby.c@... (Toby Colp) > > Marea Howe wrote: > > > > > > > > Dear Jeanie, > > Sorry I probably don't have any words of wisdom for you as Ellen's problem > > has become worse over the years and will continue to do so according to the > > doctors and my experience. However that said I can say that Ellen is much > > better if we drain her stomach 24 hours a day; ie she has a drainage bag > > constantly attached to her g-tube. If we don't do this, she is vomiting > > within 20 minutes or so. Also, regular acupuncture from a good practitioner > > helps her reflux and as MacKenzie is smaller than Ellen was when she > > started, might be of real benefit to her in the long term. Japanese style > > is better than Chinese if you can find it as they do not needle so hard and > > it is not painful. Ellen has had 2 fundos neither of which has held so > > don't place your hopes on one. Presumably you are on all the usual anti > > reflux medications. > > good luck with it. if I can think of anything else i'll let you know. > > Marea > > > Marea, > I don't know how you do it, this problem is making me crazy. Yes, > MacKenzie is on all the meds., and has just started Prilosec, again, so > we are hoping it may make a difference. She is j-tube fed and drained > 24/7 with the g-tube, but apparently there's enough secretions left to > reflux. I'm not sure why, but I have a bad feeling about a Nissen. I > guess it may be the reasonable next step though. > Isn't there a procedure where the stomach is seperated from the > esophagus, making reflux impossible? Have you tried anything like that > with Ellen? Have the doctors given you any " reason " as to why she has > never outgrown this or is it just one of those CHARGE things? > Does it bother Ellen to be " hooked " up most of the time? > > Thanks for the reply. > Jeanie Colp > mom to MacKenzie 1yr. CHARGE, Tyler 7, & Zachary 4 > Nova Scotia, Canada > > ------------------------------------------------------------------------ > Looking for your kindred spirit? > http://www.onelist.com > Go to ONElist: where kindred spirits connect and stay connected. > ------------------------------------------------------------------------ > 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 16, 1999 Report Share Posted June 16, 1999 Jeanie and Marea, I was just wondering something about this whole " reflux " issue. I wonder if there's a correlation to " how bad " the cranial nerve is, to " how bad " the reflux is. Or whether or not there are degress of severity in the cranial nerve problems. {just wondering - maybe a neurologist would be able to tell us, or maybe they have no idea!} 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 > > >Dear Jeanie, >I agree with you, it's a real and constant problem. Ellen does still reflux >with all the meds and the drainage etc. She also refluxes up frpm the >jejunum into the stomach when she feels like it! I would never agree to a >stomach separation as this would make her into a tof (ie all her saliva >would be drained pout a hole in the neck as I understand it.). Quality of >life has to come in somewhere. Last night she started to reflux up blood >with no apparent source again so we are seeing the doctor today. > >It doesn't bother her being hooked up most of the time as she is not very >mobile anyway and we have a very small portable pump which fits into the >back of her wheelchair or walker. > >The doctors haver no idea why her reflux is so bad and can't even say >whether it's a " CHARGE " thing or not. May or may not be. > >Good luck. If I find anythingf else useful, I'll let you know. > >Cheers, >Marea >---------- >> >> To: CHARGEonelist >> Subject: Re: CHARGE >> Date: Sunday, 13 June 1999 23:09 >> >> From: toby.c@... (Toby Colp) >> >> Marea Howe wrote: >> > >> > >> > >> > Dear Jeanie, >> > Sorry I probably don't have any words of wisdom for you as Ellen's >problem >> > has become worse over the years and will continue to do so according to >the >> > doctors and my experience. However that said I can say that Ellen is >much >> > better if we drain her stomach 24 hours a day; ie she has a drainage >bag >> > constantly attached to her g-tube. If we don't do this, she is vomiting >> > within 20 minutes or so. Also, regular acupuncture from a good >practitioner >> > helps her reflux and as MacKenzie is smaller than Ellen was when she >> > started, might be of real benefit to her in the long term. Japanese >style >> > is better than Chinese if you can find it as they do not needle so hard >and >> > it is not painful. Ellen has had 2 fundos neither of which has held so >> > don't place your hopes on one. Presumably you are on all the usual anti >> > reflux medications. >> > good luck with it. if I can think of anything else i'll let you know. >> > Marea >> > >> Marea, >> I don't know how you do it, this problem is making me crazy. Yes, >> MacKenzie is on all the meds., and has just started Prilosec, again, so >> we are hoping it may make a difference. She is j-tube fed and drained >> 24/7 with the g-tube, but apparently there's enough secretions left to >> reflux. I'm not sure why, but I have a bad feeling about a Nissen. I >> guess it may be the reasonable next step though. >> Isn't there a procedure where the stomach is seperated from the >> esophagus, making reflux impossible? Have you tried anything like that >> with Ellen? Have the doctors given you any " reason " as to why she has >> never outgrown this or is it just one of those CHARGE things? >> Does it bother Ellen to be " hooked " up most of the time? >> >> Thanks for the reply. >> Jeanie Colp >> mom to MacKenzie 1yr. CHARGE, Tyler 7, & Zachary 4 >> Nova Scotia, Canada >> >> ------------------------------------------------------------------------ >> Looking for your kindred spirit? >> http://www.onelist.com >> Go to ONElist: where kindred spirits connect and stay connected. >> ------------------------------------------------------------------------ >> 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@.... > > >------------------------------------------------------------------------ >Who is the most visited e-mail list community Web Service? >http://www.onelist.com >ONElist.com - where more than 20 million e-mails are exchanged each day! >------------------------------------------------------------------------ >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 16, 1999 Report Share Posted June 16, 1999 Graeme & Weir wrote: > > > > Jeanie and Marea, > I was just wondering something about this whole " reflux " issue. I wonder if > there's a correlation to " how bad " the cranial nerve is, to " how bad " the > reflux is. Or whether or not there are degress of severity in the cranial > nerve problems. {just wondering - maybe a neurologist would be able to tell > us, or maybe they have no idea!} > > 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 , It's so weird to get this letter as I just this morning printed off your cranial nerve site and was thinking the same thing. I don't know if it really matters as probably nothing could be done, but it's an interesting thought. I see Dr.Dooley Tues. must mention it to him. Jeanie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 1999 Report Share Posted June 16, 1999 Jeanie, Have you seen Dr. Dooley before? I really liked him, but we just saw him for a quick visit. Hope you like him! I'll call you tomorrow night... 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: toby.c@... (Toby Colp) > >Graeme & Weir wrote: >> >> >> >> Jeanie and Marea, >> I was just wondering something about this whole " reflux " issue. I wonder if >> there's a correlation to " how bad " the cranial nerve is, to " how bad " the >> reflux is. Or whether or not there are degress of severity in the cranial >> nerve problems. {just wondering - maybe a neurologist would be able to tell >> us, or maybe they have no idea!} >> >> 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 > >, > It's so weird to get this letter as I just this morning printed off >your cranial nerve site and was thinking the same thing. I don't know if >it really matters as probably nothing could be done, but it's an >interesting thought. I see Dr.Dooley Tues. must mention it to him. > >Jeanie > >------------------------------------------------------------------------ >Who is the most visited e-mail list community Web Service? >http://www.onelist.com >ONElist.com - where more than 20 million e-mails are exchanged each day! >------------------------------------------------------------------------ >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 16, 1999 Report Share Posted June 16, 1999 Good luck and hang in there. Ellen had chronic aspiration pneumonia until she was about 7 but hasn't had a chest infection since and the damage done while she was little has disappeared even though the reflux is still there. As they get bigger their chests often do improve. Also we used monthly infusions of intragram for a year or so and her chest was much improved while we did it. Marea ---------- > From: queenbee74@... > To: Charge Syndrome <CHARGEonelist> > Subject: Re: CHARGE > Date: Wednesday, 16 June 1999 2:45 > > From: queenbee74@... > > Marea, > > Our son has reflux really bad to he has been on Zantac for 2.5 years he was 2 months old at the time they put him on it. He just got of Ceftin for Pneamonia and we have to go in today at 2:00 pm for cheat X-Rays because we have started doing CPT with a vibrating purcusor and he has not been caughing at all he has asmatic and his doctor doesn't like it at all. I am afraid of what they will show. I will keep you informed. I got to go for know. > > > Kerry & > parents to (2.5) CHaRGEr > > > > ------------------------------------------------------------------------ > ONElist: the best source for group communications. > http://www.onelist.com > Join a new list today! > ------------------------------------------------------------------------ > 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 16, 1999 Report Share Posted June 16, 1999 Hi , From ny point of view the answer would be that they probably don't know. Ellen is supposed not to have cranial nerve problems but has severe reflux. So who knows? Cheers, Marea ---------- > > To: CHARGEonelist > Subject: Re: CHARGE > Date: Wednesday, 16 June 1999 8:46 > > > > Jeanie and Marea, > I was just wondering something about this whole " reflux " issue. I wonder if > there's a correlation to " how bad " the cranial nerve is, to " how bad " the > reflux is. Or whether or not there are degress of severity in the cranial > nerve problems. {just wondering - maybe a neurologist would be able to tell > us, or maybe they have no idea!} > > 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 > > > > > > > > >Dear Jeanie, > >I agree with you, it's a real and constant problem. Ellen does still reflux > >with all the meds and the drainage etc. She also refluxes up frpm the > >jejunum into the stomach when she feels like it! I would never agree to a > >stomach separation as this would make her into a tof (ie all her saliva > >would be drained pout a hole in the neck as I understand it.). Quality of > >life has to come in somewhere. Last night she started to reflux up blood > >with no apparent source again so we are seeing the doctor today. > > > >It doesn't bother her being hooked up most of the time as she is not very > >mobile anyway and we have a very small portable pump which fits into the > >back of her wheelchair or walker. > > > >The doctors haver no idea why her reflux is so bad and can't even say > >whether it's a " CHARGE " thing or not. May or may not be. > > > >Good luck. If I find anythingf else useful, I'll let you know. > > > >Cheers, > >Marea > >---------- > >> > >> To: CHARGEonelist > >> Subject: Re: CHARGE > >> Date: Sunday, 13 June 1999 23:09 > >> > >> From: toby.c@... (Toby Colp) > >> > >> Marea Howe wrote: > >> > > >> > > >> > > >> > Dear Jeanie, > >> > Sorry I probably don't have any words of wisdom for you as Ellen's > >problem > >> > has become worse over the years and will continue to do so according to > >the > >> > doctors and my experience. However that said I can say that Ellen is > >much > >> > better if we drain her stomach 24 hours a day; ie she has a drainage > >bag > >> > constantly attached to her g-tube. If we don't do this, she is vomiting > >> > within 20 minutes or so. Also, regular acupuncture from a good > >practitioner > >> > helps her reflux and as MacKenzie is smaller than Ellen was when she > >> > started, might be of real benefit to her in the long term. Japanese > >style > >> > is better than Chinese if you can find it as they do not needle so hard > >and > >> > it is not painful. Ellen has had 2 fundos neither of which has held so > >> > don't place your hopes on one. Presumably you are on all the usual anti > >> > reflux medications. > >> > good luck with it. if I can think of anything else i'll let you know. > >> > Marea > >> > > >> Marea, > >> I don't know how you do it, this problem is making me crazy. Yes, > >> MacKenzie is on all the meds., and has just started Prilosec, again, so > >> we are hoping it may make a difference. She is j-tube fed and drained > >> 24/7 with the g-tube, but apparently there's enough secretions left to > >> reflux. I'm not sure why, but I have a bad feeling about a Nissen. I > >> guess it may be the reasonable next step though. > >> Isn't there a procedure where the stomach is seperated from the > >> esophagus, making reflux impossible? Have you tried anything like that > >> with Ellen? Have the doctors given you any " reason " as to why she has > >> never outgrown this or is it just one of those CHARGE things? > >> Does it bother Ellen to be " hooked " up most of the time? > >> > >> Thanks for the reply. > >> Jeanie Colp > >> mom to MacKenzie 1yr. CHARGE, Tyler 7, & Zachary 4 > >> Nova Scotia, Canada > >> > >> ------------------------------------------------------------------------ > >> Looking for your kindred spirit? > >> http://www.onelist.com > >> Go to ONElist: where kindred spirits connect and stay connected. > >> ------------------------------------------------------------------------ > >> 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@.... > > > > > >------------------------------------------------------------------------ > >Who is the most visited e-mail list community Web Service? > >http://www.onelist.com > >ONElist.com - where more than 20 million e-mails are exchanged each day! > >------------------------------------------------------------------------ > >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@.... > > > > > ------------------------------------------------------------------------ > ONElist: the best source for group communications. > http://www.onelist.com > Join a new list today! > ------------------------------------------------------------------------ > 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@.... 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Guest guest Posted June 16, 1999 Report Share Posted June 16, 1999 Marea, I sometimes think this is the case a lot with our CHARGErs, esp. with it being relatively uncommon. I think it's a big guessing game for the docs alot of the time as to what will work for who. 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 > > >Hi , >From ny point of view the answer would be that they probably don't know. >Ellen is supposed not to have cranial nerve problems but has severe reflux. >So who knows? >Cheers, >Marea Quote Link to comment Share on other sites More sharing options...
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