Guest guest Posted September 11, 2002 Report Share Posted September 11, 2002 I was curious about the Nissen procedure. The doctors decided against it for my son, . He has done very well with the J-tube. His feeding tube by-passes his stomach completely. He had reflux so terrible. He was constantly throwing up when he was a new born and up until about 5 months of age. He has continuely improved since the tube was placed into his intestines and out from his nose. The NJ tube was horrible. Very traumatic each and every time we had to replace the tape or when it happened to get pulled out. Any information regarding this would be helpful. I am also not too informed on atresia. does not suffer from this. God bless to all. Lynda Dean, charger mom dean2313@... dean2313@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2002 Report Share Posted September 11, 2002 I was curious about the Nissen procedure. The doctors decided against it for my son, . He has done very well with the J-tube. His feeding tube by-passes his stomach completely. He had reflux so terrible. He was constantly throwing up when he was a new born and up until about 5 months of age. He has continuely improved since the tube was placed into his intestines and out from his nose. The NJ tube was horrible. Very traumatic each and every time we had to replace the tape or when it happened to get pulled out. Any information regarding this would be helpful. I am also not too informed on atresia. does not suffer from this. God bless to all. Lynda Dean, charger mom dean2313@... dean2313@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2002 Report Share Posted September 11, 2002 Sue, There have been other families on the list who've dealt with and are still dealing with immune system issues. I can think of one in particular but she isn't on the list much anymore. I will privately email you with her address, perhaps she can be of some assistance. RE: the b/l choanal atresia - we've been on this ride for 4.5 yrs now, and the SNOT is never-ending for us. Some kids seem to be lucky, the surgery takes, and everything is reasonably normal. We've been in for the nose-opening 6 times and her nose runs CHRONIC... We use saline to keep things thing - sprayed up the nose as often as needed. Buy some stock in Kleenex....I feel like I should own the company by now.... ~ Weir Mom to Kennedy, 4yr old CHARGEr, 13, 11, and wife to Graeme New Brunswick, Canada Visit the Weir Website: http://personal.nbnet.nb.ca/gweir ICQ# 1426476 ---- Original Message ----- From: Meckley, Sue To: ' " CHARGE " ' Sent: Wednesday, September 11, 2002 11:48 AM Subject: Question My granddaughter Sierra has gone home from the hospital twice now and within 22 hours (the first time, 48 the second time) she is back in the NICU. It seems Sierra can't stay well more than 5 or 6 days. She has had a UTI, NEC, sinus infection, blood infections and numerous operations. My daughter in law asked me to write and ask all of you if any of your little CHARGERs have elevated white cell counts because their systems are always fighting something or is this just Sierra with her immune system.(other words is this normal for CHARGE) It has been really frustrating to my daughter in law and son that everytime they think Sierra is healthy enough to come home and then something else comes up. We thought for sure she was ready to come home this time and so did all the nurses and doctors in the NICU and here she is back in the hospital within 48 hours of her being discharged. Also I know I have read about your CHARGERs having secretions. Sierra has bilateral choanal atresia. At about 6 days old she had it lasered open and she wore stints in her nose for over 3 months. They took them out about a week ago and it seems that her nose is always stuffed up. The blub suction just doesn't get the mucus out but we don't want to suction her with the more invasive with the tube down her nose and throat because it introduces more bacteria. Do you have any suggestions in what to do? Also another queston and I know you all talked about this not long ago on the list. Sierra doesn't seems to tolerate heat very well. How have you dealt with this? My daughter in law is going to ask the doctor in the NICU today to test Sierra's thyroid to see if she may have a hypothyroid. Thanks in advance for the advise Sue, grandma to Sierra 4 1/2 months (CHARGE) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2002 Report Share Posted September 11, 2002 Sue, There have been other families on the list who've dealt with and are still dealing with immune system issues. I can think of one in particular but she isn't on the list much anymore. I will privately email you with her address, perhaps she can be of some assistance. RE: the b/l choanal atresia - we've been on this ride for 4.5 yrs now, and the SNOT is never-ending for us. Some kids seem to be lucky, the surgery takes, and everything is reasonably normal. We've been in for the nose-opening 6 times and her nose runs CHRONIC... We use saline to keep things thing - sprayed up the nose as often as needed. Buy some stock in Kleenex....I feel like I should own the company by now.... ~ Weir Mom to Kennedy, 4yr old CHARGEr, 13, 11, and wife to Graeme New Brunswick, Canada Visit the Weir Website: http://personal.nbnet.nb.ca/gweir ICQ# 1426476 ---- Original Message ----- From: Meckley, Sue To: ' " CHARGE " ' Sent: Wednesday, September 11, 2002 11:48 AM Subject: Question My granddaughter Sierra has gone home from the hospital twice now and within 22 hours (the first time, 48 the second time) she is back in the NICU. It seems Sierra can't stay well more than 5 or 6 days. She has had a UTI, NEC, sinus infection, blood infections and numerous operations. My daughter in law asked me to write and ask all of you if any of your little CHARGERs have elevated white cell counts because their systems are always fighting something or is this just Sierra with her immune system.(other words is this normal for CHARGE) It has been really frustrating to my daughter in law and son that everytime they think Sierra is healthy enough to come home and then something else comes up. We thought for sure she was ready to come home this time and so did all the nurses and doctors in the NICU and here she is back in the hospital within 48 hours of her being discharged. Also I know I have read about your CHARGERs having secretions. Sierra has bilateral choanal atresia. At about 6 days old she had it lasered open and she wore stints in her nose for over 3 months. They took them out about a week ago and it seems that her nose is always stuffed up. The blub suction just doesn't get the mucus out but we don't want to suction her with the more invasive with the tube down her nose and throat because it introduces more bacteria. Do you have any suggestions in what to do? Also another queston and I know you all talked about this not long ago on the list. Sierra doesn't seems to tolerate heat very well. How have you dealt with this? My daughter in law is going to ask the doctor in the NICU today to test Sierra's thyroid to see if she may have a hypothyroid. Thanks in advance for the advise Sue, grandma to Sierra 4 1/2 months (CHARGE) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2002 Report Share Posted September 11, 2002 Sue, There have been other families on the list who've dealt with and are still dealing with immune system issues. I can think of one in particular but she isn't on the list much anymore. I will privately email you with her address, perhaps she can be of some assistance. RE: the b/l choanal atresia - we've been on this ride for 4.5 yrs now, and the SNOT is never-ending for us. Some kids seem to be lucky, the surgery takes, and everything is reasonably normal. We've been in for the nose-opening 6 times and her nose runs CHRONIC... We use saline to keep things thing - sprayed up the nose as often as needed. Buy some stock in Kleenex....I feel like I should own the company by now.... ~ Weir Mom to Kennedy, 4yr old CHARGEr, 13, 11, and wife to Graeme New Brunswick, Canada Visit the Weir Website: http://personal.nbnet.nb.ca/gweir ICQ# 1426476 ---- Original Message ----- From: Meckley, Sue To: ' " CHARGE " ' Sent: Wednesday, September 11, 2002 11:48 AM Subject: Question My granddaughter Sierra has gone home from the hospital twice now and within 22 hours (the first time, 48 the second time) she is back in the NICU. It seems Sierra can't stay well more than 5 or 6 days. She has had a UTI, NEC, sinus infection, blood infections and numerous operations. My daughter in law asked me to write and ask all of you if any of your little CHARGERs have elevated white cell counts because their systems are always fighting something or is this just Sierra with her immune system.(other words is this normal for CHARGE) It has been really frustrating to my daughter in law and son that everytime they think Sierra is healthy enough to come home and then something else comes up. We thought for sure she was ready to come home this time and so did all the nurses and doctors in the NICU and here she is back in the hospital within 48 hours of her being discharged. Also I know I have read about your CHARGERs having secretions. Sierra has bilateral choanal atresia. At about 6 days old she had it lasered open and she wore stints in her nose for over 3 months. They took them out about a week ago and it seems that her nose is always stuffed up. The blub suction just doesn't get the mucus out but we don't want to suction her with the more invasive with the tube down her nose and throat because it introduces more bacteria. Do you have any suggestions in what to do? Also another queston and I know you all talked about this not long ago on the list. Sierra doesn't seems to tolerate heat very well. How have you dealt with this? My daughter in law is going to ask the doctor in the NICU today to test Sierra's thyroid to see if she may have a hypothyroid. Thanks in advance for the advise Sue, grandma to Sierra 4 1/2 months (CHARGE) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2002 Report Share Posted September 12, 2002 Lynda, I am not sure if this post was addressed to me but I thought I would answer it to make sure. Brittney only had a g-tube and back in Febuary she had the NISSEN (a twisting of the stomach to stop acid reflux from coming back up) I will say that it has completely stopped the acid reflux and toned down the secretions alot. When she gets a cold they start back up again but that is normal. When Britt got the Nissen I could start to tell a big difference in her, the only thing, she got dumping from it.. But she is gaining weight now it is just taking some time. I hope that something I said answers the ? that you were looking for, just let me know if you need anything!! I will try to help!! Tina Deskins mom to Cody 2yrs, Brittney 1yr CHARgE, and wife to Bristol, TN > I was curious about the Nissen procedure. The doctors decided against it for > my son, . He has done very well with the J-tube. His feeding tube > by-passes his stomach completely. He had reflux so terrible. He was > constantly throwing up when he was a new born and up until about 5 months of > age. He has continuely improved since the tube was placed into his > intestines and out from his nose. The NJ tube was horrible. Very traumatic > each and every time we had to replace the tape or when it happened to get > pulled out. > > Any information regarding this would be helpful. I am also not too informed > on atresia. does not suffer from this. > > God bless to all. > > Lynda Dean, charger mom > dean2313@a... > dean2313@y... > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2002 Report Share Posted September 13, 2002 Hello< The infection problems and the temp.intolerance may go together..... has hypothyroidism, hypoparathyroidism and they just assume adrenal insuffencies (witch means his immune system isn't up to par) apparently they all go together he just has to take a thyroid pill, some calcium, and a tiny dose of steroids every day ...He still gets sick but I think it has more to do with the trach then anything else because it is aways repertory illnesses.....they call this partial degeorge sequence he doesn't have the chromosome part of it .... has any one on this list tried using a one cc/ml syringe (also called a tb syringe) attached to the suction tubing ,to suction noses? we use it to suction s trach most of the time (he coughs it up that far) and his nose all the time it doesn't fit in either far enough to do any damage or introduce infection it doesn't have to be kept sterile We have been doing this since first got his trach (they taught us this at the hospital) it protects against bloody noses from people slipping with a cath and I thinks its just easier for the kids to take ( laughs when you do it now), and with a trach it encourages the cough reflex to get stronger ..... I hope this helped some .. mom to 11 months. http://community.webtv.net/maryechick12/ http://community.webtv.net/maryechick12/pets Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2009 Report Share Posted May 3, 2009 Hi Val- This is somewhat off topic, but just wondering what you think. I’ve come up with a big throbbing infection of a tooth. It just came up overnight out of the blue and is throbbing and swollen. Do you think that stress dosing some HC might help a little until I can get some other treatment for it? Right now I’m taking 25 mg and I’ve rubbed a little tea tree oil on the gum around it. Any ideas? Thanks, Dana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2009 Report Share Posted May 3, 2009 ANY infection requires more cortilsl to help combat it as well as the inflammation so it would be a good idea to take soem extra for those reasons, but I doubt it will clear up the infection. I would get some antibiotics for that. Artistic Grooming- Hurricane WV http://www.stopthethyroidmadness.com/ http://health.groups.yahoo.com/group/NaturalThyroidHormonesADRENALS/ http://health.groups.yahoo.com/group/RT3_T3/ Quote Link to comment Share on other sites More sharing options...
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