Guest guest Posted June 29, 2007 Report Share Posted June 29, 2007 , Welcome to the list! My daughter, MacKenzie who is now 9, literally didn't sleep for 4 years. This was definately the worst thing that I have gone through in terms of CHARGE and I don't think I could do it again. Her turn around came when she had a Nissen at age 3.5 years and then had her tonsils and adenoids removed several months later. I think that reflux was the major issue. I truly hope you get this figured out and if not respite care would be advisable. There is only so long you can cope with severe sleep deprivation. Good luck. Jeanie Colp mom to MacKenzie 9 CHARGE, Tyler 15 and Zachary 12 Nova Scotia, Canada P.S. Have you tried Melatonin or any other sleep aids? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2007 Report Share Posted June 29, 2007 , Welcome to the list!! I wish I has something to say that would help. I am still working on solids with my daughter Eva. She also has never had sleep issues so I can't help you there. Eva was on oxygen when she was younger is Willon on oxygen since she has the airway issues? I am sure someone here will be able to help and again welcome to the group. Willow is a very pretty name!! Hugs, Crystal mom to (11), (4), and Eva (2 year old CHARGEr) wife to Dan in Illinois www.babysites.com/sites/crystalm1476/ > > Hello, my name is and I am a mum to 9 month old Willow and we > live in Thurrock in Essex (is there anyone nearby?????). Willow was > born with choanal atresia, low muscle tone, a narrowing of her > airway and quite bad feeding problems..................she is back > to being NG tube fed although she tolerates solids but gags > frequently and vomits. > > I am writing this hoping someone can give me some advice on > diagnosing Charge. we have recieved information from the genetics > team saying that CHD7 testing is not available in the UK, however I > have read different information saying that Great Ormond Street > offers testing????? > > Also, and more importantly I need help to encourage Willow to sleep. > she wakes every night, crying in her sleep and we often cant wake > her.....................we think this may be reflux (Great Ormond > Street performed a sleep study and said her breathing pattern was > normal), we don't get any sleep as a result and need some advice on > how to combat this > Any help would be greatly appreciated. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2007 Report Share Posted June 29, 2007 , welcome to the list and congratulations on the birth of Willow ( she is only the 2nd Willow I've known -- BEAUTIFUL name). I agree with jeanie and also with your suspicion that reflux is the likely culprit of her nighttime woes. Is there a way you can prop her bed up some to keep her at an angle? That would probably help some while you figure out what exactly it is. Kennedy's reflux was managed with a Nissen fundoplication at 6 months of age, best surgery she's ever had, despite the 30% risk of failure with that surgery. We were willing to chance it and I'm glad we did. Hope you get some answers and SLEEP soon! -- Weir Personal Web Site: http://chargesyndrome.info The Adventures of Kennedy Blog: http://chargesyndrome.blogspot.com Secretary, CHARGE Syndrome Foundation Inc: http://www.chargesyndrome.org Email: lisa@... " It is far better to grasp the universe as it really is than to persist in delusion, however satisfying and reassuring. " --Carl Sagan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2007 Report Share Posted June 29, 2007 , Welcome to the CHARGE family !! Casey Mom to Dawn 29 HH, Ken almost 18 ADHD, and 15 CHARGE ________________________________________________________________________________\ ____ Fussy? Opinionated? Impossible to please? Perfect. Join Yahoo!'s user panel and lay it on us. http://surveylink.yahoo.com/gmrs/yahoo_panel_invite.asp?a=7 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2007 Report Share Posted June 29, 2007 Thank you for all of your replies and kind words..........as most of you have commented on, sleep deprivation is the worst and I only hope that her reflux (if thats what it is) gets sorted, and the professionals will take us seriously. I told her nurse today that we need to have the PH test because she keeps being sick and her NG tube keeps coming out (3 times in two days last week!!!). Willow is on oxygen (one of you asked) however we just had a sleep study at great ormond street and they said that her desaturations (which dipped to 60 in her sleep at the last study) had stopped, and she showed no signs of abnormal sleep patterns............i'm not convinced that this is a true indication of her sleep, because she often takes huge breaths and seems to hold her breath/stop breathing many times during the day!!!!!!!!!! thanks for listening > > > > > > Hello, my name is and I am a mum to 9 month old Willow and > > we > > > live in Thurrock in Essex (is there anyone nearby?????). Willow > > was > > > born with choanal atresia, low muscle tone, a narrowing of her > > > airway and quite bad feeding problems..................she is back > > > to being NG tube fed although she tolerates solids but gags > > > frequently and vomits. > > > > > > I am writing this hoping someone can give me some advice on > > > diagnosing Charge. we have recieved information from the genetics > > > team saying that CHD7 testing is not available in the UK, however > > I > > > have read different information saying that Great Ormond Street > > > offers testing????? > > > > > > Also, and more importantly I need help to encourage Willow to > > sleep. > > > she wakes every night, crying in her sleep and we often cant wake > > > her.....................we think this may be reflux (Great Ormond > > > Street performed a sleep study and said her breathing pattern was > > > normal), we don't get any sleep as a result and need some advice > > on > > > how to combat this > > > Any help would be greatly appreciated. > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2007 Report Share Posted June 29, 2007 welcome to this wonderful group!! we are in the u.s. my son is almost 12 (in aug.) we never had the feeding problems you are experiencing, the ones we had were bad enough. hope you find the answer to your sleeping problems. again welcome. maria, mom to timmy 11 ChARGE, keegan 9, liam 6, wife to pat new mum!!!!!!!!! Hello, my name is and I am a mum to 9 month old Willow and we live in Thurrock in Essex (is there anyone nearby?????). Willow was born with choanal atresia, low muscle tone, a narrowing of her airway and quite bad feeding problems..................she is back to being NG tube fed although she tolerates solids but gags frequently and vomits. I am writing this hoping someone can give me some advice on diagnosing Charge. we have recieved information from the genetics team saying that CHD7 testing is not available in the UK, however I have read different information saying that Great Ormond Street offers testing????? Also, and more importantly I need help to encourage Willow to sleep. she wakes every night, crying in her sleep and we often cant wake her.....................we think this may be reflux (Great Ormond Street performed a sleep study and said her breathing pattern was normal), we don't get any sleep as a result and need some advice on how to combat this Any help would be greatly appreciated. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2007 Report Share Posted June 29, 2007 welcome to the list im in aus and im a charger as we like to say in here im 22 wow ay ive got tube fees ands so much other probs hugs ellen in aus where in the uk r u from i know of a few uk charge fams and mum has a few friends over there to > > welcome to this wonderful group!! we are in the u.s. my son is almost 12 > (in aug.) we never had the feeding problems you are experiencing, the ones > we had were bad enough. hope you find the answer to your sleeping problems. > again welcome. > > maria, mom to timmy 11 ChARGE, keegan 9, liam 6, wife to pat > new mum!!!!!!!!! > > Hello, my name is and I am a mum to 9 month old Willow and we > live in Thurrock in Essex (is there anyone nearby?????). Willow was > born with choanal atresia, low muscle tone, a narrowing of her > airway and quite bad feeding problems..................she is back > to being NG tube fed although she tolerates solids but gags > frequently and vomits. > > I am writing this hoping someone can give me some advice on > diagnosing Charge. we have recieved information from the genetics > team saying that CHD7 testing is not available in the UK, however I > have read different information saying that Great Ormond Street > offers testing????? > > Also, and more importantly I need help to encourage Willow to sleep. > she wakes every night, crying in her sleep and we often cant wake > her.....................we think this may be reflux (Great Ormond > Street performed a sleep study and said her breathing pattern was > normal), we don't get any sleep as a result and need some advice on > how to combat this > Any help would be greatly appreciated. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2007 Report Share Posted June 29, 2007 welcome to the list im in aus and im a charger as we like to say in here im 22 wow ay ive got tube fees ands so much other probs hugs ellen in aus where in the uk r u from i know of a few uk charge fams and mum has a few friends over there to > > welcome to this wonderful group!! we are in the u.s. my son is almost 12 > (in aug.) we never had the feeding problems you are experiencing, the ones > we had were bad enough. hope you find the answer to your sleeping problems. > again welcome. > > maria, mom to timmy 11 ChARGE, keegan 9, liam 6, wife to pat > new mum!!!!!!!!! > > Hello, my name is and I am a mum to 9 month old Willow and we > live in Thurrock in Essex (is there anyone nearby?????). Willow was > born with choanal atresia, low muscle tone, a narrowing of her > airway and quite bad feeding problems..................she is back > to being NG tube fed although she tolerates solids but gags > frequently and vomits. > > I am writing this hoping someone can give me some advice on > diagnosing Charge. we have recieved information from the genetics > team saying that CHD7 testing is not available in the UK, however I > have read different information saying that Great Ormond Street > offers testing????? > > Also, and more importantly I need help to encourage Willow to sleep. > she wakes every night, crying in her sleep and we often cant wake > her.....................we think this may be reflux (Great Ormond > Street performed a sleep study and said her breathing pattern was > normal), we don't get any sleep as a result and need some advice on > how to combat this > Any help would be greatly appreciated. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2007 Report Share Posted June 29, 2007 welcome to the list im in aus and im a charger as we like to say in here im 22 wow ay ive got tube fees ands so much other probs hugs ellen in aus where in the uk r u from i know of a few uk charge fams and mum has a few friends over there to > > welcome to this wonderful group!! we are in the u.s. my son is almost 12 > (in aug.) we never had the feeding problems you are experiencing, the ones > we had were bad enough. hope you find the answer to your sleeping problems. > again welcome. > > maria, mom to timmy 11 ChARGE, keegan 9, liam 6, wife to pat > new mum!!!!!!!!! > > Hello, my name is and I am a mum to 9 month old Willow and we > live in Thurrock in Essex (is there anyone nearby?????). Willow was > born with choanal atresia, low muscle tone, a narrowing of her > airway and quite bad feeding problems..................she is back > to being NG tube fed although she tolerates solids but gags > frequently and vomits. > > I am writing this hoping someone can give me some advice on > diagnosing Charge. we have recieved information from the genetics > team saying that CHD7 testing is not available in the UK, however I > have read different information saying that Great Ormond Street > offers testing????? > > Also, and more importantly I need help to encourage Willow to sleep. > she wakes every night, crying in her sleep and we often cant wake > her.....................we think this may be reflux (Great Ormond > Street performed a sleep study and said her breathing pattern was > normal), we don't get any sleep as a result and need some advice on > how to combat this > Any help would be greatly appreciated. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2007 Report Share Posted June 30, 2007 My word, I have received more information from this site than I have done in the 9 months of Willows life!!! Yes, food does regulary come out of her nose, the solids that she has seems to bubble in the back of her throat, even when the milk goes in her tube it seems to bubble in the back of her throat!!!! thanks flo for your phone number, I will try to contact you when I get a spare 5 minutes.............Willow has just woken up screaming for the first time ever, usually she is so happy in the mornings, it just took me and Joe (my boyfriend) over an hour to settle her, and now she is asleep again, she wouldnt even open her eyes, now we are sitting here exhausted and dumbfounded as to what just happened!!!!!!!!!!!!!!!!!!! thanks again, jenny > > > > welcome to this wonderful group!! we are in the u.s. my son is almost 12 > > (in aug.) we never had the feeding problems you are experiencing, the ones > > we had were bad enough. hope you find the answer to your sleeping problems. > > again welcome. > > > > maria, mom to timmy 11 ChARGE, keegan 9, liam 6, wife to pat > > new mum!!!!!!!!! > > > > Hello, my name is and I am a mum to 9 month old Willow and we > > live in Thurrock in Essex (is there anyone nearby?????). Willow was > > born with choanal atresia, low muscle tone, a narrowing of her > > airway and quite bad feeding problems..................she is back > > to being NG tube fed although she tolerates solids but gags > > frequently and vomits. > > > > I am writing this hoping someone can give me some advice on > > diagnosing Charge. we have recieved information from the genetics > > team saying that CHD7 testing is not available in the UK, however I > > have read different information saying that Great Ormond Street > > offers testing????? > > > > Also, and more importantly I need help to encourage Willow to sleep. > > she wakes every night, crying in her sleep and we often cant wake > > her.....................we think this may be reflux (Great Ormond > > Street performed a sleep study and said her breathing pattern was > > normal), we don't get any sleep as a result and need some advice on > > how to combat this > > Any help would be greatly appreciated. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2007 Report Share Posted June 30, 2007 charge testing is availabe but has to b sent away think les and amielie got theirs sent into holland corect me if im wrong les hugs ellen in aus > > Hello, my name is and I am a mum to 9 month old Willow and we > live in Thurrock in Essex (is there anyone nearby?????). Willow was > born with choanal atresia, low muscle tone, a narrowing of her > airway and quite bad feeding problems..................she is back > to being NG tube fed although she tolerates solids but gags > frequently and vomits. > > I am writing this hoping someone can give me some advice on > diagnosing Charge. we have recieved information from the genetics > team saying that CHD7 testing is not available in the UK, however I > have read different information saying that Great Ormond Street > offers testing????? > > Also, and more importantly I need help to encourage Willow to sleep. > she wakes every night, crying in her sleep and we often cant wake > her.....................we think this may be reflux (Great Ormond > Street performed a sleep study and said her breathing pattern was > normal), we don't get any sleep as a result and need some advice on > how to combat this > Any help would be greatly appreciated. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2007 Report Share Posted June 30, 2007 Hi ! And congratulations!! My son, (2 1/2 with CHARGE), had reflux and was on oxygen when he came home from the hospital. His clinical signs of reflux were enough to convince them to put him on zantac (which didn't help) then prilosec (which helped some). We also tried reglan (which helps the food digest faster) but he was in the 2% of kids whose reflux got worse on the med (just our luck!). I would suggest you push your doctors hard for reflux meds. Sometimes we had to push our doctors hard to believe us and help us, but your the only advocate for your child and even though I was never one to speak up much before, I've learned how to do so. It would be nice to skip the tests and just try the meds since so many kids have reflux. As far as the sleep issue, grunted and fussed a lot in his sleep and we found that swaddling him very tightly and elevating his bed helped a lot. This is probably too simple a solution to mention, but I thought it was something to consider. And our doctors told us the formal diagnosis after the genetic test was useful, but it really didn't matter... has every system affected in the CHARGE acronym, so it didn't matter if there was a genetic flaw or not (which of course there is) but the fact that all the physical issues presented themselves in him is enough to consider him having the syndrome. Please know we'll be praying for you all. Hang in there. It gets easier, especially with reflux as they get older and when the oxygen is no longer needed. I thought it would never end sometimes (all the spitups and crying and oxygen tanks), but they did eventually. Take care, Beth > > > > Hello, my name is and I am a mum to 9 month old Willow and > we > > live in Thurrock in Essex (is there anyone nearby?????). Willow > was > > born with choanal atresia, low muscle tone, a narrowing of her > > airway and quite bad feeding problems..................she is back > > to being NG tube fed although she tolerates solids but gags > > frequently and vomits. > > > > I am writing this hoping someone can give me some advice on > > diagnosing Charge. we have recieved information from the genetics > > team saying that CHD7 testing is not available in the UK, however > I > > have read different information saying that Great Ormond Street > > offers testing????? > > > > Also, and more importantly I need help to encourage Willow to > sleep. > > she wakes every night, crying in her sleep and we often cant wake > > her.....................we think this may be reflux (Great Ormond > > Street performed a sleep study and said her breathing pattern was > > normal), we don't get any sleep as a result and need some advice > on > > how to combat this > > Any help would be greatly appreciated. > > > > > Quote Link to comment Share on other sites More sharing options...
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