Guest guest Posted January 7, 2008 Report Share Posted January 7, 2008 Hi, I am mom to CJ who will be 3 April 1st and fever free for almost 1 year now. Our decision was based on his response to prednisone. After almost a year of fevers about every 18 days we ended up in Boston. The doctor we saw had seen 30 cases up to that point and after reviewing all of his many, many tests and seeing the quick response ( fever disappearing after just one dose of prednisone) he suggested the tonsils and adnoids be removed. The decision was ultimately ours and he was only 22 months at the time. We decided to do it to try anything to end his suffering. We are of course extremely happy with the results. The surgery itself and about 10 days after was tough but we would do it again in a minute. He is such a different kid. Hope I could help, if you have any other questions feel free. Good luck. Dawn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2008 Report Share Posted January 7, 2008 Hi, I am mom to CJ who will be 3 April 1st and fever free for almost 1 year now. Our decision was based on his response to prednisone. After almost a year of fevers about every 18 days we ended up in Boston. The doctor we saw had seen 30 cases up to that point and after reviewing all of his many, many tests and seeing the quick response ( fever disappearing after just one dose of prednisone) he suggested the tonsils and adnoids be removed. The decision was ultimately ours and he was only 22 months at the time. We decided to do it to try anything to end his suffering. We are of course extremely happy with the results. The surgery itself and about 10 days after was tough but we would do it again in a minute. He is such a different kid. Hope I could help, if you have any other questions feel free. Good luck. Dawn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2008 Report Share Posted January 7, 2008 We gave one dose of prednisolone (relutantly) and after I gave it to him the fevers went away but he still looked sickly. Dark circles and was agressive. What did it for me was one day I was sitting in church and I looked at Cade and I felt like people were looking at him because he looked sick, so I got up and left. But really our immunologist gave us options. The steroid, or surgery, or tyelnol & motrin, or T & A. We had already been giving him so much tyelnol & motrin that it worried me to give him so much. Also I was dead set against the steriod, mainly because our immunologist really did not want us to give him that much. So he suggested that we try the T & A because he had such good results in his practice. I think he did not push hard with the suggestion is because it is surgery and that is a decision we had to make. I am soooooo glad we did. Different kid. The surgery was quick, The recovery was tolerable and I would do over again. Cade was 3 1/2 years old. He is now 5 and no fevers. Our immunologist did not recommend any further testing. I talked to him about it and he did not think that it was needed. Because he said he would treat it the same way. Leanne Cade 5 yrs old We had his surgery in Dallas at Childrens Medical. Park Central Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2008 Report Share Posted January 7, 2008 Jenn, If you look back in the archives, you will see .any parents asking the same questions. My favorite version was " who has had a T & A for their child and regrets it? " You ask what drove me to decide " yes " - it is primarily the responses that I read for a year to questions just like yours. Over and over again, I saw people respond positively. I have yet to see a single post where they " regretted " having a T & A. Even if al of the symptoms didn't clear up or if they got occasional episodes - no one regrets trying it (or posts it). I can't even say I've seen anyone post that it had absolutely no impact - but I could be wrong. We haven't gone long enough yet to say for certain, but I looked at our spreadsheet and it has been 53 days since the last fever (which also had an ear infection) and 64 days since the last solo fever. We tried Prednisone with lots of aggression and fevers every 12-14 days if we gave 2 tsp (10 mls), so we reduced it until we only used 3mls (at 35 lbs), which was barely effective. We tried cimetidine for 4 months with no noticeable improvement. Without steriods, she fevered around 105-106 for 4-7 days every 35 days or so. So we decided it was either around 30 doses of Tylenol/Motrin every month, or a daily drug, or we try the T & A. Ultimtely, we knew we would likely have to put her ear tubes back in - so we decided that we should go ahead and try it. While rough (very rough) for 10 days (primarily days 8-10), I can't see us ever " regretting " it. What is there to regret? She's very fine now and they odds of anything going wrong were so low. I just wish we had better stats on treatment for our kids. We really need a registry with timelines, medicines that work or don't work and surgeries. They one thing I'm preparing myself for is for this to return around or just before puberty. I'm seeing more posts of the sort. In my own (non-medical) head, I think of this disorder affecting the children during high growth stages. My daughter got it fairly young, but she is also very large for her age (now 36-37 inches and about 35 pounds pre-surgery at 29 months old). Being large also helped in her recovery, since she lost several pounds. Without more data - it is hard to know what the right answer is. So, the best answer is whatever you and your family are comfortable with. Best of luck in your decision making process. ~Ginger Systems Solutions Principal, CAR Financial Services Work: (770) 828-1397 TREO: (404) 915-5035 ----------------------------------------- ==================================================== This message contains PRIVILEGED and CONFIDENTIAL information that is intended only for use by the named recipient. If you are not the named recipient, any disclosure, dissemination, or action based on the contents of this message is prohibited. In such case please notify us and destroy and delete all copies of this transmission. Thank you. ==================================================== Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2008 Report Share Posted January 7, 2008 Jenn, If you look back in the archives, you will see .any parents asking the same questions. My favorite version was " who has had a T & A for their child and regrets it? " You ask what drove me to decide " yes " - it is primarily the responses that I read for a year to questions just like yours. Over and over again, I saw people respond positively. I have yet to see a single post where they " regretted " having a T & A. Even if al of the symptoms didn't clear up or if they got occasional episodes - no one regrets trying it (or posts it). I can't even say I've seen anyone post that it had absolutely no impact - but I could be wrong. We haven't gone long enough yet to say for certain, but I looked at our spreadsheet and it has been 53 days since the last fever (which also had an ear infection) and 64 days since the last solo fever. We tried Prednisone with lots of aggression and fevers every 12-14 days if we gave 2 tsp (10 mls), so we reduced it until we only used 3mls (at 35 lbs), which was barely effective. We tried cimetidine for 4 months with no noticeable improvement. Without steriods, she fevered around 105-106 for 4-7 days every 35 days or so. So we decided it was either around 30 doses of Tylenol/Motrin every month, or a daily drug, or we try the T & A. Ultimtely, we knew we would likely have to put her ear tubes back in - so we decided that we should go ahead and try it. While rough (very rough) for 10 days (primarily days 8-10), I can't see us ever " regretting " it. What is there to regret? She's very fine now and they odds of anything going wrong were so low. I just wish we had better stats on treatment for our kids. We really need a registry with timelines, medicines that work or don't work and surgeries. They one thing I'm preparing myself for is for this to return around or just before puberty. I'm seeing more posts of the sort. In my own (non-medical) head, I think of this disorder affecting the children during high growth stages. My daughter got it fairly young, but she is also very large for her age (now 36-37 inches and about 35 pounds pre-surgery at 29 months old). Being large also helped in her recovery, since she lost several pounds. Without more data - it is hard to know what the right answer is. So, the best answer is whatever you and your family are comfortable with. Best of luck in your decision making process. ~Ginger Systems Solutions Principal, CAR Financial Services Work: (770) 828-1397 TREO: (404) 915-5035 ----------------------------------------- ==================================================== This message contains PRIVILEGED and CONFIDENTIAL information that is intended only for use by the named recipient. If you are not the named recipient, any disclosure, dissemination, or action based on the contents of this message is prohibited. In such case please notify us and destroy and delete all copies of this transmission. Thank you. ==================================================== Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2008 Report Share Posted January 8, 2008 We did the T & A for our daughter (then aged 33 months) on August 10, 2007. She's been fever-free since then. (The sound you hear is me knocking on every piece of wood I can find.) We went with surgery for three reasons (all insanely personal, I am not passing judgment on anyone else's decision): 1. We're against giving our daughter steroids over a potentially long time horizon. We were even getting nervous about the long-term effects of the Tylenol-Motrin " cocktail " every 20ish days. 2. I come from a medical family, so it was easier for me to get trusted opinions about doing surgery on a young child. With the new T & A procedure, kids lose a lot less blood. Blood loss was a big reason surgeons were hesitant to do the procedure on young kids even five years ago. 3. We are fortunate enough to live near two world-class children's hospitals (CHOP in Philly and A.I. DuPont in Wilmington, DE. We went to DuPont.) Was it an easy decision? No. Was it easy to watch your first-born wheeled off for surgery? Hell no. Do we regret it? No. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2008 Report Share Posted January 8, 2008 Ginger, Thank you so much for your response (and other people's responses too of course!)! It has been most helpful. My daughter has been fevering since around 18 months and was just diagnosed with so I don't want to jump on the T & A bandwagon too quickly you know? I am in the process of doing my research and will be talking with her pedi once I am done. My main concern is giving her steroids (even if it is considered a low dose) versus subjecting her to surgery. Not two of the best choices available but as a parent, I'm sure you can understand my apprehension. I am going to do a search for the threazd you pointed out right now. I am thinking of trying out the prednisone and see how she takes it and how it affects her fevers and going from there. T'Mia (4yrs) fevering since 18 months. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2008 Report Share Posted January 8, 2008 Your response pretty much mirrors my own concerns. I am very concerned with giving her prednisone for any extended period of time, even in such a small dose. As well as doing my research, I am going to email my mother's friend tonight (she is a Dr.) because I trust her opinion and ask her what she thinks on both the prednisone and T & A option. Your last lines literally brought tears to my eyes. T'Mia (4yrs) fevering since 18 months Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2009 Report Share Posted February 9, 2009 We found that it took 10 days to recover, so if he had the surgery on Thursday, 2/5 - he may be able to return on 2/16 or 2/17. Â Best of luck! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2009 Report Share Posted February 9, 2009 Our pediatric ENT was absolutely adamant about Lily staying home and taking it easy for the full 2 weeks. He said most parents make the mistake of letting their children play or go to school by day 10 because the kids are acting " normal " and very energetic. However, the risk of bleeding is still high until 14 days post surgery. It's not easy for them to understand, nor is it easy to keep them calm but it's worth it. Good luck, April Mom to Olivia 7 y.o. & Lily 3 y.o. since 11 mos. T & A 10/11/08 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2009 Report Share Posted February 9, 2009 Amy, my son was out of school for one week exactly. He had surgery on a Wednesday and was back at school the next Thursday. He only had the prescription pain medication twice and we used tylenol the rest of the time. He hated the codeine and refused to take it after the first couple of times. Every child is different, of course, but returning to school really seemed to help more because it helped Calder return to his schedule. He was bored at home and was very whiny and clingy. He was 100% by the time he went to school on Friday. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2009 Report Share Posted February 11, 2009 My 5 year old daughter has just had the surgery on January 26. I was told to keep her home for one week and then " it is up to how she feels " . She stayed home for 2 weeks. I gave her pain meds for 2.5 days only, she wasn't in any pain afterwords but she was very tired and cranky. She was eating an ice cream and started to eat normal food after 3-4 days (though in small amounts and very slowly) but still lost a lot of weight and I think it contributed to her fatigue. Quote Link to comment Share on other sites More sharing options...
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