Guest guest Posted July 13, 2002 Report Share Posted July 13, 2002 Thanks for the tip Robin, that's a new one for our repetoire...~ 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 Re: Question We do not leave Ally in the waiting room with the other kids. Although she is not immune compromised a simple cold can quickly turn to something much worse so we do not take out chances. Anytime we are in a dr's office or hospital I tell the check in person that Ally is nutropenic (immune system compromised) and ask where I can take her to be isolated. I do not pose it to them as an option. Just say " Sierra is nutropenic - where can I take her to be isolated " . This " nutropenic " seems to be some kind of magic word. My pharmacist friend recommended I start telling people in the medical world that so that they would be more careful with Ally and also to assure a private room in the hospital. It works wonderfully. Robin mom to Ally CHARGE almost 4 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 14, 2002 Report Share Posted July 14, 2002 how scary we never had it get that bad I have always demanded to either be seen or reschedule if I had to wait even 1/2 hour hehehe 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 July 14, 2002 Report Share Posted July 14, 2002 how scary we never had it get that bad I have always demanded to either be seen or reschedule if I had to wait even 1/2 hour hehehe 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 July 14, 2002 Report Share Posted July 14, 2002 how scary we never had it get that bad I have always demanded to either be seen or reschedule if I had to wait even 1/2 hour hehehe 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 September 11, 2002 Report Share Posted September 11, 2002 I'm responding to your letter of many concerns about Siera. It's an unfortunate situation. My son, , has spend many days in the hospital as well. I wish I had some advice to you, however, my son's problems seem to be quite different. That's what is so apparent with Chargers--they are unique. If you had questions concerning apnea, J-tube (feeding tube which enters the small intestines), physical delays, hearing and visual impairments, I might be of some help. I would hope. Anytime, please feel free to email me. If not just to say hi and give support. Charger Mom, Lynda Dean 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'm responding to your letter of many concerns about Siera. It's an unfortunate situation. My son, , has spend many days in the hospital as well. I wish I had some advice to you, however, my son's problems seem to be quite different. That's what is so apparent with Chargers--they are unique. If you had questions concerning apnea, J-tube (feeding tube which enters the small intestines), physical delays, hearing and visual impairments, I might be of some help. I would hope. Anytime, please feel free to email me. If not just to say hi and give support. Charger Mom, Lynda Dean 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, I dont know a whole lot about CHARGE but I know some things. Seirra and Brittney sound alike in the choanal atresia part. When she was about a month old she had to have surgery to correct her bilateral choanal atresia, she only had the stents in for about 2 weeks. She had alot of secretions too, what they did was sterile suctioning with the catheter. We have those kits here at home to, everything inside the pack is sterile. We have never had any problems with it so far. Britt has been in and out of the hospital ALOT!! Back in May is when she was in there at least 1-2 times a week, this went on for about a month or so, most of it was respitory. Still at 14months, she has alot of secretions when she gets sick, but when she is healthy we hardly have to suction her at all. I will say that is has gotten better as time has gone by, the secretions slowly decreased. She is learning to decrease them. I will say that things got better after she had her NISSEN surgery for her acid reflux, alot of her secretions came from that. I hope that she gets better soon!! Things will work out, with CHARGE that is one thing that I have found out, IT ALL TAKES TIME and sometimes a surgery here and there. If you need anything feel free to e-mail me at (markwillsfn18@...) or you can call me at home: 1-423- 878-5513. Tina Deskins mom to Cody 2yrs, Brittney 1yr CHARgE, and wife to Bristol, TN > 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, I dont know a whole lot about CHARGE but I know some things. Seirra and Brittney sound alike in the choanal atresia part. When she was about a month old she had to have surgery to correct her bilateral choanal atresia, she only had the stents in for about 2 weeks. She had alot of secretions too, what they did was sterile suctioning with the catheter. We have those kits here at home to, everything inside the pack is sterile. We have never had any problems with it so far. Britt has been in and out of the hospital ALOT!! Back in May is when she was in there at least 1-2 times a week, this went on for about a month or so, most of it was respitory. Still at 14months, she has alot of secretions when she gets sick, but when she is healthy we hardly have to suction her at all. I will say that is has gotten better as time has gone by, the secretions slowly decreased. She is learning to decrease them. I will say that things got better after she had her NISSEN surgery for her acid reflux, alot of her secretions came from that. I hope that she gets better soon!! Things will work out, with CHARGE that is one thing that I have found out, IT ALL TAKES TIME and sometimes a surgery here and there. If you need anything feel free to e-mail me at (markwillsfn18@...) or you can call me at home: 1-423- 878-5513. Tina Deskins mom to Cody 2yrs, Brittney 1yr CHARgE, and wife to Bristol, TN > 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 How old is , Lynda? I'd love to hear more about him! Welcome to the list... ~ 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 Re: Re: Question 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 How old is , Lynda? I'd love to hear more about him! Welcome to the list... ~ 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 Re: Re: Question 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 February 23, 2009 Report Share Posted February 23, 2009 I swapped armour for 25 mcg t3 on January 9th. Since then, Ive upped the t3 each time Ive gotten that bone cold feeling and slight constipation. About every week a raise.. then February 1st I was at 75 mcg and really felt good for about 3 whole weeks. I thought that meant I would just stay there. Now Im confused because a few days ago I abruptly got the bone cold and constipation( and the same air hunger heart thing) again... So, I rose another 12.5 2 days ago to 87.50. Is this wierd? Why did I feel good for a longer time...and will I keep needing to raise?Its fustrating. Just when you think you feel great, you need to raise. I am getting my ft3 and ferritin and aldosterone checked again in the next few days...so...questions 1. should I not take any iron..how many days before test(I havent been taking it too much, but now feel I need it, and dont want to alter the ressults terribly) 2.I know we are not supposed to take the am dose of t3 that very day...but if the pm dose basically wears off by morning..then how will the ft3 be acurate? Im looking to see when the ft3 will actually get up there. 3. If I was taking the 25,25,25 dose....where should I add the new 12.5? I have been adding it to the am dose. 37.5,25,25. But, since Ill be trying to check levels...should I instead add the extra 12.5 to the pm dose. like..25,25,37.5 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2009 Report Share Posted February 23, 2009 I always take the PM dose before labs but nothing the AM of and I get the draw done early. this gives you a steady serum state not the excess it would show if you took the Am sdose and caught the peak. There will still be plenty there with 75mcg. I would add it to the AM dose. Some folks nneed mreo than 75mcg to stabilize and keep feeling good, but that you were able to feel good longer his time says you are CLOSE. -- 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...
Guest guest Posted February 23, 2009 Report Share Posted February 23, 2009 I always take the PM dose before labs but nothing the AM of and I get the draw done early. this gives you a steady serum state not the excess it would show if you took the Am sdose and caught the peak. There will still be plenty there with 75mcg. I would add it to the AM dose. Some folks nneed mreo than 75mcg to stabilize and keep feeling good, but that you were able to feel good longer his time says you are CLOSE. -- 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...
Guest guest Posted February 23, 2009 Report Share Posted February 23, 2009 Further this sayd you are close but not there yet. -- 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...
Guest guest Posted February 23, 2009 Report Share Posted February 23, 2009 Further this sayd you are close but not there yet. -- 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...
Guest guest Posted February 23, 2009 Report Share Posted February 23, 2009 okay..then Ill try and be hopeful...but just wanted to be clear I added to 87.5 Subject: Re: questionTo: RT3_T3 Date: Monday, February 23, 2009, 5:49 PM I always take the PM dose before labs but nothing the AM of and I get the draw done early. this gives you a steady serum state not the excess it would show if you took the Am sdose and caught the peak. There will still be plenty there with 75mcg. I would add it to the AM dose. Some folks nneed mreo than 75mcg to stabilize and keep feeling good, but that you were able to feel good longer his time says you are CLOSE.-- 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...
Guest guest Posted February 23, 2009 Report Share Posted February 23, 2009 okay..then Ill try and be hopeful...but just wanted to be clear I added to 87.5 Subject: Re: questionTo: RT3_T3 Date: Monday, February 23, 2009, 5:49 PM I always take the PM dose before labs but nothing the AM of and I get the draw done early. this gives you a steady serum state not the excess it would show if you took the Am sdose and caught the peak. There will still be plenty there with 75mcg. I would add it to the AM dose. Some folks nneed mreo than 75mcg to stabilize and keep feeling good, but that you were able to feel good longer his time says you are CLOSE.-- 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...
Guest guest Posted February 24, 2009 Report Share Posted February 24, 2009 okay...how long off iron before the ferritin test? is 122/81 bp high...that seems high for me. what are reasons for high bp? Subject: Re: questionTo: RT3_T3 Date: Monday, February 23, 2009, 5:50 PM Further this sayd you are close but not there yet.-- 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...
Guest guest Posted February 24, 2009 Report Share Posted February 24, 2009 okay...how long off iron before the ferritin test? is 122/81 bp high...that seems high for me. what are reasons for high bp? Subject: Re: questionTo: RT3_T3 Date: Monday, February 23, 2009, 5:50 PM Further this sayd you are close but not there yet.-- 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...
Guest guest Posted February 24, 2009 Report Share Posted February 24, 2009 okay...how long off iron before the ferritin test? is 122/81 bp high...that seems high for me. what are reasons for high bp? Subject: Re: questionTo: RT3_T3 Date: Monday, February 23, 2009, 5:50 PM Further this sayd you are close but not there yet.-- 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...
Guest guest Posted February 24, 2009 Report Share Posted February 24, 2009 okay...how long off iron before the ferritin test? I don't know! LOLI have never had to take iron in my adult life but someoone on the adrenals list should knwo. is 122/81 bp high...that seems high for me. what are reasons for high bp? Thta is NOT high BP. It is normal! -- 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...
Guest guest Posted February 24, 2009 Report Share Posted February 24, 2009 okay...how long off iron before the ferritin test? I don't know! LOLI have never had to take iron in my adult life but someoone on the adrenals list should knwo. is 122/81 bp high...that seems high for me. what are reasons for high bp? Thta is NOT high BP. It is normal! -- 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...
Guest guest Posted February 24, 2009 Report Share Posted February 24, 2009 oh, then it used to be low! Subject: Re: questionTo: RT3_T3 Date: Tuesday, February 24, 2009, 7:30 AM okay...how long off iron before the ferritin test?I don't know! LOLI have never had to take iron in my adult life but someoone on the adrenals list should knwo.is 122/81 bp high...that seems high for me. what are reasons for high bp?Thta is NOT high BP. It is normal!-- 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...
Guest guest Posted February 24, 2009 Report Share Posted February 24, 2009 oh, then it used to be low! Subject: Re: questionTo: RT3_T3 Date: Tuesday, February 24, 2009, 7:30 AM okay...how long off iron before the ferritin test?I don't know! LOLI have never had to take iron in my adult life but someoone on the adrenals list should knwo.is 122/81 bp high...that seems high for me. what are reasons for high bp?Thta is NOT high BP. It is normal!-- 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...
Guest guest Posted February 24, 2009 Report Share Posted February 24, 2009 oh, then it used to be low! Subject: Re: questionTo: RT3_T3 Date: Tuesday, February 24, 2009, 7:30 AM okay...how long off iron before the ferritin test?I don't know! LOLI have never had to take iron in my adult life but someoone on the adrenals list should knwo.is 122/81 bp high...that seems high for me. what are reasons for high bp?Thta is NOT high BP. It is normal!-- 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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