Guest guest Posted November 23, 2006 Report Share Posted November 23, 2006 Hi Kathie! Welcome to the group! YES ,, it IS worth it and since your doc took you off work for the year you are on tx,, just remember that it will be over with soon and then you can get back to your life!!! IT IS WORTH IT!!!!carolmowery <carolmowery@...> wrote: hi. I'm Kathie. i found out in nov of 05 i had hep c type 1a. i started treatments 5 weeks ago. i went from 32 million to 0. i have had a lot of problems. i'm sick all the time. the doctor took me off work for a year. i was beginning to think it wasn't worth it now i know it is. i'll write when i can kathie in wisconsin Jackie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2006 Report Share Posted November 30, 2006 Hi Kim, Regarding the Cimetidine, most pharmacies now can flavor the medicine for you, just ask. It is wonderful. After smelling the Cimetidine, I can't even being to think how awlful it would taste. Bobbie (mother of - - 21 months old) and 5 years old. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2006 Report Share Posted December 4, 2006 Are you from Illinois? We are in Quincy. Trish Becky Shay <buckbuck127@...> wrote: Hi everyone, I just joined this group & wanted to introduce myself & my son. My name is Becky & my son is Spencer. He is 5 years old & was just diagnosed with @ 2wks ago. He has been dealing with the " episodes " for about 1 year now. They seem to be about every 4-6wks apart. I noticed the pattern about 5months ago & mentioned it to our pediatrician only to be told I was over-reacting. (Anybody else get that???) He was rapid strep tested every time & never tested positive, mono bloodwork was drawn 3x- also negative. We were always told it was viral- go home, treat the fever & it will go away. I finally was FED UP & started seeking other opinions. After seeing a new pediatrician, he reccomended Children's Memorial in Chicago,IL. We saw the Infectious disease dept one time & were given this diagnoses. At first I thought it was a bunch of bull- just a label to get parents off the Dr's butt. However, after joining this group it's starting to seem legit. I am still a little worried that something terrible is being missed- God forbid. It's comforting to know there are others out there dealing with the same thing. (Not for the kids, but you know what I mean). We were told about the steroid treatment but kind of discouraged from trying it. Hopefully he will outgrow it soon. Sorry for the long intro- I'm just anxious to hear from people dealing with the same thing. Thanks- Becky --------------------------------- Cheap Talk? Check out Messenger's low PC-to-Phone call rates. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2006 Report Share Posted December 5, 2006 Yes, we live in Channahon,IL @ 20 minutes from Joliet,IL trish santos <summerday148@...> wrote: Are you from Illinois? We are in Quincy. Trish Becky Shay <buckbuck127@...> wrote: Hi everyone, I just joined this group & wanted to introduce myself & my son. My name is Becky & my son is Spencer. He is 5 years old & was just diagnosed with @ 2wks ago. He has been dealing with the " episodes " for about 1 year now. They seem to be about every 4-6wks apart. I noticed the pattern about 5months ago & mentioned it to our pediatrician only to be told I was over-reacting. (Anybody else get that???) He was rapid strep tested every time & never tested positive, mono bloodwork was drawn 3x- also negative. We were always told it was viral- go home, treat the fever & it will go away. I finally was FED UP & started seeking other opinions. After seeing a new pediatrician, he reccomended Children's Memorial in Chicago,IL. We saw the Infectious disease dept one time & were given this diagnoses. At first I thought it was a bunch of bull- just a label to get parents off the Dr's butt. However, after joining this group it's starting to seem legit. I am still a little worried that something terrible is being missed- God forbid. It's comforting to know there are others out there dealing with the same thing. (Not for the kids, but you know what I mean). We were told about the steroid treatment but kind of discouraged from trying it. Hopefully he will outgrow it soon. Sorry for the long intro- I'm just anxious to hear from people dealing with the same thing. Thanks- Becky --------------------------------- Cheap Talk? Check out Messenger's low PC-to-Phone call rates. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2007 Report Share Posted January 5, 2007 Welcome Jacquie. That is really horrible that your grown children won't support you, especially if they've seen your health improvement. You are not alone, though. I'm sure many of us can make claims about how our families think we are nuts. Ann Marie On Jan 5, 2007, at 9:56 AM, brooking_jacqueline wrote: > My grown children are not at all > supportive nor are any of my friends so I wanted to find like-minded > people who are actually interested in the way to real health and > wouldn't be defensive about discussing eating totally organically > and not getting guilted into accepting the prepackaged, fast food > way of life bandied about on TV. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2007 Report Share Posted January 5, 2007 Hi Jacquie, My name is Bonnie and i am new to the group too. I like what you have said. I too was looking for a group of like minded people. I am just starting my journey of healthier eating,and there seems to be alot of knowlegable people here and a lot of good info Bonnie > > I have always been interested in health, but have never found a plan > that really resonated with me and I've tried plenty of them. I'm 70 > years old and retired and decided a couple years ago to start taking > better care of my health if I wanted to enjoy the rest of my life. > I had all the usual problems associated with a poor diet and > lifestyle: high blood pressure, high cholesterol, depression, 60 > pounds overweight, no exercise, etc. > > I found the Weston A. Price website and was interested in their > approach to health so I bought Sally Fallon's and Enig's > book " Eat Fat Lose Fat " . Well, what can I say...A miracle > happened! I started using coconut oil religiously, buying all > organic food and cooking everything from scratch including beet > kvass, kefir, beef and chicken bone broths. I found the MVV farm in > Wisconsin and bought all my dairy products (raw milk, cream, butter) > eggs, grass fed beef, chicken, pork. I have followed WAP's advice > and no longer have any of the health problems that I had > previously. > > I have gone on several websites relating to healthy eating but I > could never find a place that I felt really comfortable with. I > just found out about the WAP local chapters and decided this might > be what I am looking for. My grown children are not at all > supportive nor are any of my friends so I wanted to find like- minded > people who are actually interested in the way to real health and > wouldn't be defensive about discussing eating totally organically > and not getting guilted into accepting the prepackaged, fast food > way of life bandied about on TV. > > The swaps sound like fun a great way to meet people and discuss the > latest happenings in the natural food movement. > > Jacquie > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2007 Report Share Posted January 5, 2007 Welcome Jacquie!Glad you found us. You said you make your own beet Kvass. I am wondering if you use the salt called for in the NT book??? I have made it but really can not stand the saltiness and am wondering if it would still work with out the salt? Same with the ginger aid drink and some of the others, do you really need to add the salt??? Kimi ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ http://potterkimi.journalspace.com/ www.Jremedies.com Therefore, my beloved brethren, be ye steadfast, unmovable, always abounding in the work of the Lord, forasmuch as ye know that your labor is not in vain in the Lord. 1 Corinthians 15:58/KJV --- http://USFamily.Net/dialup.html - $8.25/mo! -- http://www.usfamily.net/dsl.html - $19.99/mo! --- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2007 Report Share Posted January 6, 2007 Welcome.... I don't know how good i can help you because i am only 14 years old... but welcome just try and think of positive thingsbonnie51baby <bonnie51baby@...> wrote: hello everyone, my name is bonnie i'm soon to be 53yrs, old.i'm a mother of 8, and grandmother of 8, and soon to be 10(have 2 new grandchildren coming in june). i suffer from depressionand strugle to make it through day to day. i hope i can help you ,and hope to get the support i need.thanks for letting me join.thanksbonnie __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2007 Report Share Posted January 6, 2007 hi bonnie. i know what a struggle depression can be so don't hesitate to drop me a line if you ever need to. you will find lots of support in this group. evelynbonnie51baby <bonnie51baby@...> wrote: hello everyone, my name is bonnie i'm soon to be 53yrs, old.i'm a mother of 8, and grandmother of 8, and soon to be 10(have 2 new grandchildren coming in june). i suffer from depressionand strugle to make it through day to day. i hope i can help you ,and hope to get the support i need.thanks for letting me join.thanksbonnie __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2007 Report Share Posted January 6, 2007 this group will be of great support to you. i hope you find the comfort and friendship you need here.margareto3002 <margareto3002@...> wrote: Hi there, I am a new member. I am from St. 's, Newfoundland, Canada. I am very happy to be part of this group. I have been diagnosed with Systemic Vasculitis, Henoch-Purpura Arthritis, and Crescentic Glomerolenephritis. Both the Arthritis and C.G. are under control but the vasculitis has affected my left foot and lower leg (nerve damage, numbness, burning you know the drill). This has been steady for over a year now. Lots of meds, sleepless nights and frustration but taking one day at a time. Hoping someone out there is familiar with this and can share their story. I am okay with it and taking it one day at a time , as I know there is someone out there worse than I am. Thank you for accepting me as a new member, I have a feeling that this group will help me and my family of eight (the brady bunch? lol) __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2007 Report Share Posted January 7, 2007 Hello I am sorry you are so ill. I hope with medications things can get handled. Welcome. > > Hi there, I am a new member. I am from St. 's, Newfoundland, > Canada. I am very happy to be part of this group. I have been > diagnosed with Systemic Vasculitis, Henoch-Purpura Arthritis, and > Crescentic Glomerolenephritis. Both the Arthritis and C.G. are under > control but the vasculitis has affected my left foot and lower leg > (nerve damage, numbness, burning you know the drill). This has been > steady for over a year now. Lots of meds, sleepless nights and > frustration but taking one day at a time. Hoping someone out there is > familiar with this and can share their story. I am okay with it and > taking it one day at a time , as I know there is someone out there > worse than I am. Thank you for accepting me as a new member, I have a > feeling that this group will help me and my family of eight (the brady > bunch? lol) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2007 Report Share Posted January 8, 2007 Thanks Dawn Thank you for replying to my message, enough about me, how long have u been with the Group? Are you or someone in your family ill as well? I hope u had a healthy and happy Xmas and New Year. > > > > Hi there, I am a new member. I am from St. 's, Newfoundland, > > Canada. I am very happy to be part of this group. I have been > > diagnosed with Systemic Vasculitis, Henoch-Purpura Arthritis, and > > Crescentic Glomerolenephritis. Both the Arthritis and C.G. are > under > > control but the vasculitis has affected my left foot and lower leg > > (nerve damage, numbness, burning you know the drill). This has been > > steady for over a year now. Lots of meds, sleepless nights and > > frustration but taking one day at a time. Hoping someone out there > is > > familiar with this and can share their story. I am okay with it > and > > taking it one day at a time , as I know there is someone out there > > worse than I am. Thank you for accepting me as a new member, I have > a > > feeling that this group will help me and my family of eight (the > brady > > bunch? lol) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2007 Report Share Posted January 8, 2007 Margret I have been with the group since August. I have a toddler and pre- schooler. I am in the middle os testing for MS. I have been ill a long time and now they found pale spots on my brain. I have an EEG, MRA and Spinal this week. My DH is the healthiest person I know. Dawn > > > > > > Hi there, I am a new member. I am from St. 's, Newfoundland, > > > Canada. I am very happy to be part of this group. I have been > > > diagnosed with Systemic Vasculitis, Henoch-Purpura Arthritis, and > > > Crescentic Glomerolenephritis. Both the Arthritis and C.G. are > > under > > > control but the vasculitis has affected my left foot and lower > leg > > > (nerve damage, numbness, burning you know the drill). This has > been > > > steady for over a year now. Lots of meds, sleepless nights and > > > frustration but taking one day at a time. Hoping someone out > there > > is > > > familiar with this and can share their story. I am okay with it > > and > > > taking it one day at a time , as I know there is someone out > there > > > worse than I am. Thank you for accepting me as a new member, I > have > > a > > > feeling that this group will help me and my family of eight (the > > brady > > > bunch? lol) > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2007 Report Share Posted January 9, 2007 I too just found this group. My son Mikey was clinically diagnosed at 3 after countless doses of unnecessary antibiotics. He had a tonsils and adenoid out almost 2 yrs ago and the occurrence of fever went away. Unfortunately he has just had a return of symptoms, but I definitely credit the operation for giving him that long without getting sick. There is some research that supports this too. Why? Who knows, but maybe it gives your child a break from this or even eliminates it like it has for others. Mike Holder > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2007 Report Share Posted January 10, 2007 Hi Mike, My son is sceduled to have his tonsils removed soon. I am sorry to hear your sons fevers have returned. Did your son stay in the hospital when his tonsils were removed or did they send him home that day? I am so afraid that when he does have the operation and has a set back with fever right away, how this will affect him. It's very difficult to get him to drink with the fevers, I would hate to think if he got fever shortly after having his tonsils removed what that would do to him. thank you. Diane mother to Jaeden age 5- mh33123 <mh33123@...> wrote: I too just found this group. My son Mikey was clinically diagnosed at 3 after countless doses of unnecessary antibiotics. He had a tonsils and adenoid out almost 2 yrs ago and the occurrence of fever went away. Unfortunately he has just had a return of symptoms, but I definitely credit the operation for giving him that long without getting sick. There is some research that supports this too. Why? Who knows, but maybe it gives your child a break from this or even eliminates it like it has for others. Mike Holder > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2007 Report Share Posted January 15, 2007 Hi, - This is indeed a great group to get info and support on . When our son was finally diagnosed after a year of fevers, we opted to treat each fever episode with Prednisone. We needed to give him two 20mg doses - with the doses 24 hours apart - to stop a fever episode and keep it stopped. This was fine for us at the beginning - the fevers were five weeks or so apart, so we and our immunologist were not worried about long-term side effects from the steroid. However, in about 4 months, his fevers started coming every 10 days apart - which you will find from reading posts to this group will happen sometimes with Prednisone therapy. So, we then, after reading this site, asked out Immunologist to start our son on Singulair. Being a very safe drug with almost no side effects (we have yet to see a side effect), she agreed. His last fever episode on January 1st was 114 days from the prior one. We treated that episode with Prednisone and moved on. Now we are waiting to see how long it takes for the next fever episode to happen. So, you might want to investigate Singulair every day in conjunction with Prednisone at each episode to stop the fever. The only issue we had - and this was just a few weeks ago - was with insurance (Singulair is expensive) - they wanted us to investigate other drugs for our son's asthma (which he doesn't have!). Our doctor got involved and we got approval for the Singulair to be covered for this year. Some insurance companies might be difficult since treatment is not an FDA approved use for Singulair. My guess is that it might be hard to get it into a clincial trial since the incidence is low - but you never know. Our doctor is working on getting it into the literature, so that might help! Our best wishes on finding the best treatment option and for your family as you walk the journey! and Amy Newlon Cincinnati, OH W. Newlon ________________________________________________________________________________\ ____ Have a burning question? Go to www.Answers. and get answers from real people who know. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2007 Report Share Posted January 15, 2007 We are in the same boat, but our doctor won't diagnose Asthma, so we can't get our insurance company to pay for it, even after letters from the doctor. Trish Newlon <jasonnewlon@...> wrote: Hi, - This is indeed a great group to get info and support on . When our son was finally diagnosed after a year of fevers, we opted to treat each fever episode with Prednisone. We needed to give him two 20mg doses - with the doses 24 hours apart - to stop a fever episode and keep it stopped. This was fine for us at the beginning - the fevers were five weeks or so apart, so we and our immunologist were not worried about long-term side effects from the steroid. However, in about 4 months, his fevers started coming every 10 days apart - which you will find from reading posts to this group will happen sometimes with Prednisone therapy. So, we then, after reading this site, asked out Immunologist to start our son on Singulair. Being a very safe drug with almost no side effects (we have yet to see a side effect), she agreed. His last fever episode on January 1st was 114 days from the prior one. We treated that episode with Prednisone and moved on. Now we are waiting to see how long it takes for the next fever episode to happen. So, you might want to investigate Singulair every day in conjunction with Prednisone at each episode to stop the fever. The only issue we had - and this was just a few weeks ago - was with insurance (Singulair is expensive) - they wanted us to investigate other drugs for our son's asthma (which he doesn't have!). Our doctor got involved and we got approval for the Singulair to be covered for this year. Some insurance companies might be difficult since treatment is not an FDA approved use for Singulair. My guess is that it might be hard to get it into a clincial trial since the incidence is low - but you never know. Our doctor is working on getting it into the literature, so that might help! Our best wishes on finding the best treatment option and for your family as you walk the journey! and Amy Newlon Cincinnati, OH W. Newlon __________________________________________________________ Have a burning question? Go to www.Answers. and get answers from real people who know. --------------------------------- Never Miss an Email Stay connected with on your mobile. Get started! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2007 Report Share Posted January 16, 2007 We are in the same boat as well. Our pediatrician will not diagnose Asthma so our insurance will not pay. My pediatrician did agree to give us every sample of Singulair that is available in his office and all additional samples which arrive. We are on our way to pick them up right now. I hope that it is enough to last for a little while until we come up with an alternative method of getting insurance coverage. If anyone has had success in getting insurance coverage (other than using asthma) I would be grateful to hear about it. Thank you. Barb K Ava 2 1/2 () trish santos <summerday148@...> wrote: We are in the same boat, but our doctor won't diagnose Asthma, so we can't get our insurance company to pay for it, even after letters from the doctor. Trish Newlon <jasonnewlon@...> wrote: Hi, - This is indeed a great group to get info and support on . When our son was finally diagnosed after a year of fevers, we opted to treat each fever episode with Prednisone. We needed to give him two 20mg doses - with the doses 24 hours apart - to stop a fever episode and keep it stopped. This was fine for us at the beginning - the fevers were five weeks or so apart, so we and our immunologist were not worried about long-term side effects from the steroid. However, in about 4 months, his fevers started coming every 10 days apart - which you will find from reading posts to this group will happen sometimes with Prednisone therapy. So, we then, after reading this site, asked out Immunologist to start our son on Singulair. Being a very safe drug with almost no side effects (we have yet to see a side effect), she agreed. His last fever episode on January 1st was 114 days from the prior one. We treated that episode with Prednisone and moved on. Now we are waiting to see how long it takes for the next fever episode to happen. So, you might want to investigate Singulair every day in conjunction with Prednisone at each episode to stop the fever. The only issue we had - and this was just a few weeks ago - was with insurance (Singulair is expensive) - they wanted us to investigate other drugs for our son's asthma (which he doesn't have!). Our doctor got involved and we got approval for the Singulair to be covered for this year. Some insurance companies might be difficult since treatment is not an FDA approved use for Singulair. My guess is that it might be hard to get it into a clincial trial since the incidence is low - but you never know. Our doctor is working on getting it into the literature, so that might help! Our best wishes on finding the best treatment option and for your family as you walk the journey! and Amy Newlon Cincinnati, OH W. Newlon __________________________________________________________ Have a burning question? Go to www.Answers. and get answers from real people who know. --------------------------------- Never Miss an Email Stay connected with on your mobile. Get started! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2007 Report Share Posted January 16, 2007 I'll have to ask our Dr. about samples, we are actually using our other daughter's that has Asthma, they are both taking it every other day. We tried the company, but make too much for assistance. Trish Barbra Koloseike <barbrakolo@...> wrote: We are in the same boat as well. Our pediatrician will not diagnose Asthma so our insurance will not pay. My pediatrician did agree to give us every sample of Singulair that is available in his office and all additional samples which arrive. We are on our way to pick them up right now. I hope that it is enough to last for a little while until we come up with an alternative method of getting insurance coverage. If anyone has had success in getting insurance coverage (other than using asthma) I would be grateful to hear about it. Thank you. Barb K Ava 2 1/2 () trish santos <summerday148@...> wrote: We are in the same boat, but our doctor won't diagnose Asthma, so we can't get our insurance company to pay for it, even after letters from the doctor. Trish Newlon <jasonnewlon@...> wrote: Hi, - This is indeed a great group to get info and support on . When our son was finally diagnosed after a year of fevers, we opted to treat each fever episode with Prednisone. We needed to give him two 20mg doses - with the doses 24 hours apart - to stop a fever episode and keep it stopped. This was fine for us at the beginning - the fevers were five weeks or so apart, so we and our immunologist were not worried about long-term side effects from the steroid. However, in about 4 months, his fevers started coming every 10 days apart - which you will find from reading posts to this group will happen sometimes with Prednisone therapy. So, we then, after reading this site, asked out Immunologist to start our son on Singulair. Being a very safe drug with almost no side effects (we have yet to see a side effect), she agreed. His last fever episode on January 1st was 114 days from the prior one. We treated that episode with Prednisone and moved on. Now we are waiting to see how long it takes for the next fever episode to happen. So, you might want to investigate Singulair every day in conjunction with Prednisone at each episode to stop the fever. The only issue we had - and this was just a few weeks ago - was with insurance (Singulair is expensive) - they wanted us to investigate other drugs for our son's asthma (which he doesn't have!). Our doctor got involved and we got approval for the Singulair to be covered for this year. Some insurance companies might be difficult since treatment is not an FDA approved use for Singulair. My guess is that it might be hard to get it into a clincial trial since the incidence is low - but you never know. Our doctor is working on getting it into the literature, so that might help! Our best wishes on finding the best treatment option and for your family as you walk the journey! and Amy Newlon Cincinnati, OH W. Newlon __________________________________________________________ Have a burning question? Go to www.Answers. and get answers from real people who know. --------------------------------- Never Miss an Email Stay connected with on your mobile. Get started! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2007 Report Share Posted January 17, 2007 Hello, You should get your doctor to fill out family medical leave papers for you. At least then your employer would have record of why you have to miss so much work. I understand how difficult it is, and most employers frown on the amount of work you have to miss. If you were to be let go with the back up of FMLA papers on file you would be able to draw your unemployment. My son starts kindergarten next year and I am concerned about how he will keep up. We have even considered me being a stay at home Mom and home schooling. I don't know how we could manage less my paycheck. My son was just diagnosed last month with after about two years of fever. Prednisone knocks the fevers out immediately but he still has the swollen limp nodes for about a week and aches, and now the fevers come more often. I give my son massages and lots of warm soothing drinks like tea with honey and lemon (he loves it). I'm basically stuck to his side for about a week when he has an episode, and we are lucky to have lots of support from Grandma's. My son goes in for a tonsillectomy on February 20th. We are praying this helps. I am also a new member and have read all the messages and with some children tonsillectomies do help. Our ENT agreed to keep Jaeden in the Hospital for two days for observation when he has it done. I will let you know how he does with fevers afterwards. Good luck to you and your family. Diane Mother to Jaeden 5yrs old- matt bachman <21@...> wrote: Hello, I am the mother of 2 1/2 year old Maya who was diagnosed in April with . She started getting her fever when she was 14 months old. She started getting her fever every 4 weeks. It was very predictable. After many visits to the doctor with them telling us that she just had a virus, we decided to go to Children's Hospital to get a second opinion. A year later we had a diagnosis. Her other symptoms include stomach ache with vomiting, and swollen tonsils with many puss pockets. We tried the prednisone and it worked great for getting rid of the fever. However, it immediately increased her fevers to every 1-2 weeks. We decided then to try the cimitidine. We are in our second month of taking that but it does not seem to be helping. Once again her fevers have increased in frequency to 1-2 weeks. She is currently fevering and she just ended her last fever last Wednesday. She has not even been fever free for a week. I feel so awful for her. My husband and I are very frustrated, we discussed with her doctor today about a tonsillectomy and are going to have a consultation with an ENT. We are hoping and praying that this will be the answer but we are skeptical because nothing else has worked. We also have a 7 month old girl who we are hoping will not have the disease. I know that there is not a hereditary link but it is still very scary. My other concern (that I have not seen any mention of) is how do other working parents cope with there child being sick all of the time. I am working part time at a job that I really enjoy but find it very hard having to miss work all of the time. Any comments? Tina Maya 2 1/2 Ava 7 mo Arvada, CO --------------------------------- Have a burning question? Go to Answers and get answers from real people who know. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2007 Report Share Posted January 17, 2007 Hello, You should get your doctor to fill out family medical leave papers for you. At least then your employer would have record of why you have to miss so much work. I understand how difficult it is, and most employers frown on the amount of work you have to miss. If you were to be let go with the back up of FMLA papers on file you would be able to draw your unemployment. My son starts kindergarten next year and I am concerned about how he will keep up. We have even considered me being a stay at home Mom and home schooling. I don't know how we could manage less my paycheck. My son was just diagnosed last month with after about two years of fever. Prednisone knocks the fevers out immediately but he still has the swollen limp nodes for about a week and aches, and now the fevers come more often. I give my son massages and lots of warm soothing drinks like tea with honey and lemon (he loves it). I'm basically stuck to his side for about a week when he has an episode, and we are lucky to have lots of support from Grandma's. My son goes in for a tonsillectomy on February 20th. We are praying this helps. I am also a new member and have read all the messages and with some children tonsillectomies do help. Our ENT agreed to keep Jaeden in the Hospital for two days for observation when he has it done. I will let you know how he does with fevers afterwards. Good luck to you and your family. Diane Mother to Jaeden 5yrs old- matt bachman <21@...> wrote: Hello, I am the mother of 2 1/2 year old Maya who was diagnosed in April with . She started getting her fever when she was 14 months old. She started getting her fever every 4 weeks. It was very predictable. After many visits to the doctor with them telling us that she just had a virus, we decided to go to Children's Hospital to get a second opinion. A year later we had a diagnosis. Her other symptoms include stomach ache with vomiting, and swollen tonsils with many puss pockets. We tried the prednisone and it worked great for getting rid of the fever. However, it immediately increased her fevers to every 1-2 weeks. We decided then to try the cimitidine. We are in our second month of taking that but it does not seem to be helping. Once again her fevers have increased in frequency to 1-2 weeks. She is currently fevering and she just ended her last fever last Wednesday. She has not even been fever free for a week. I feel so awful for her. My husband and I are very frustrated, we discussed with her doctor today about a tonsillectomy and are going to have a consultation with an ENT. We are hoping and praying that this will be the answer but we are skeptical because nothing else has worked. We also have a 7 month old girl who we are hoping will not have the disease. I know that there is not a hereditary link but it is still very scary. My other concern (that I have not seen any mention of) is how do other working parents cope with there child being sick all of the time. I am working part time at a job that I really enjoy but find it very hard having to miss work all of the time. Any comments? Tina Maya 2 1/2 Ava 7 mo Arvada, CO --------------------------------- Have a burning question? Go to Answers and get answers from real people who know. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2007 Report Share Posted January 17, 2007 Hello, We have a son and he had his tonsils & adnoids out Oct 06. He turned 4 in December and has been fever free since. I hope that a t & a will work for you as it did for us. Cade had fever every 2 wks for over a year before we had the operation. I just want everyone to know how well this has worked for us. Cade's other symptoms were stomach ache, dark circles around eyes, he had mouth sores one time, feet hurt, hands hurt, would not eat. Now he is like a normal boy and our lives are normal. I work and his sickness was very hard for me and my husband. Now we do not have the stress every two weeks. I hope that the doctor will consider t & a for you because I feel that this has done wonderful things for our Cade and our family. Leanne Cade 4 yrs Alisha 20 25 matt bachman <21@...> wrote: Hello, I am the mother of 2 1/2 year old Maya who was diagnosed in April with . She started getting her fever when she was 14 months old. She started getting her fever every 4 weeks. It was very predictable. After many visits to the doctor with them telling us that she just had a virus, we decided to go to Children's Hospital to get a second opinion. A year later we had a diagnosis. Her other symptoms include stomach ache with vomiting, and swollen tonsils with many puss pockets. We tried the prednisone and it worked great for getting rid of the fever. However, it immediately increased her fevers to every 1-2 weeks. We decided then to try the cimitidine. We are in our second month of taking that but it does not seem to be helping. Once again her fevers have increased in frequency to 1-2 weeks. She is currently fevering and she just ended her last fever last Wednesday. She has not even been fever free for a week. I feel so awful for her. My husband and I are very frustrated, we discussed with her doctor today about a tonsillectomy and are going to have a consultation with an ENT. We are hoping and praying that this will be the answer but we are skeptical because nothing else has worked. We also have a 7 month old girl who we are hoping will not have the disease. I know that there is not a hereditary link but it is still very scary. My other concern (that I have not seen any mention of) is how do other working parents cope with there child being sick all of the time. I am working part time at a job that I really enjoy but find it very hard having to miss work all of the time. Any comments? Tina Maya 2 1/2 Ava 7 mo Arvada, CO --------------------------------- Have a burning question? Go to Answers and get answers from real people who know. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2007 Report Share Posted January 17, 2007 Hi Tina, I certainly feel for what you are going through. My son Will just turned 6 and is in Kindergarten. He had consistent fevers (every 3 weeks for 6 days straight) from the time he was about 10 months old. As a mother who also worked full time, this was SO stressful on everyone. I felt so bad for Will being constantly sick, and guilty for missing so much work, and stressed that each day my husband and I would look at each other and say " Who has the less demanding schedule at work today? " so we could figure out our plan. Unfortunately we had little family support to rely on. And by the way....we went without a diagnosis for nearly three years, so were constantly wondering if there was a serious underlying problem. Because Will was constantly misdiagnosed with a virus...most frequently hand, foot and mouth disease, you can imagine daycare wanted him as far away as possible! The good news for us, is that once Will was diagnosed, and we found out that he was not contagious, switched daycares, and had our pediatrician write a description of his condition for the center, we have not had nearly as big of problem. Now, what I will say, is that we have chosen to treat Will with Prednisone (Cimetidine did not work for him), because rather than being sick for 6 days, he is sick for about 3 hours, but unfortunately more frequently (every 1-2 weeks on average). Because he is really feeling better quickly, and the daycare knows he isn't contagious, they have been very accommodating by waiving their " sick policy " for us when we know he is having a episode. We pick him up if he comes down with a fever at school, treat him with prednisone, and he is almost always back to his normal self the next day and ready for school. It has allowed us to miss one day of work every week or so, rather than 6 days every 3 weeks. I certainly don't advocate sending a sick child to daycare, but if you are in a situation where treating your daughter with prednisone is right for you and you have the same sort of experience (which I understand is quite common), then I would ask your pediatrician to support you to work with your daycare provider. It will be interesting to see what happens next year when Will enters the public school system as a first grader. Hopefully they will be as accommodating. It will only be harder for Will if he needs to miss a lot of school as he gets older. Oh, the other thing that helped for me was being able to talk to my coworkers and boss about his condition once Will was diagnosed, so they knew I wasn't crazy!! I mean let's face it...unless you know about , it is a little unbelievable! We go to the NIH in a week or so for our first visit, and everyone at work is as excited to hear about the experience as we are. This is hard. Hang in there. Best wishes to you and Maya. Mother to Will Henry age 6 () and Kolton age 11 matt bachman <21@...> wrote: Hello, I am the mother of 2 1/2 year old Maya who was diagnosed in April with . She started getting her fever when she was 14 months old. She started getting her fever every 4 weeks. It was very predictable. After many visits to the doctor with them telling us that she just had a virus, we decided to go to Children's Hospital to get a second opinion. A year later we had a diagnosis. Her other symptoms include stomach ache with vomiting, and swollen tonsils with many puss pockets. We tried the prednisone and it worked great for getting rid of the fever. However, it immediately increased her fevers to every 1-2 weeks. We decided then to try the cimitidine. We are in our second month of taking that but it does not seem to be helping. Once again her fevers have increased in frequency to 1-2 weeks. She is currently fevering and she just ended her last fever last Wednesday. She has not even been fever free for a week. I feel so awful for her. My husband and I are very frustrated, we discussed with her doctor today about a tonsillectomy and are going to have a consultation with an ENT. We are hoping and praying that this will be the answer but we are skeptical because nothing else has worked. We also have a 7 month old girl who we are hoping will not have the disease. I know that there is not a hereditary link but it is still very scary. My other concern (that I have not seen any mention of) is how do other working parents cope with there child being sick all of the time. I am working part time at a job that I really enjoy but find it very hard having to miss work all of the time. Any comments? Tina Maya 2 1/2 Ava 7 mo Arvada, CO --------------------------------- Have a burning question? Go to Answers and get answers from real people who know. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2007 Report Share Posted January 22, 2007 My parents watch my son for me when he is sick - otherwise I have NO idea how people cope. It has to be terribly hard. I hate not being with him when he's sick though - but I don't really have any other choice - I am a teacher and they have to get subs etc. to fill in for me . . . Good luck! Hannah Aidan - fevering 21 months - 3 years old Sid - 5 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2007 Report Share Posted January 22, 2007 I am a child care provider. I take care of a little girl with . Once I knew she was not contagious it is okay to take care of her. We cannot take children who are contagious but she isn't. When she gets her fevers and pain (leg and mouth) I have her medicine and I give it to her. She does very well on it and we find she doesn't think she is sick so much that way. She handles it with just Tylenol and/or Motrin (alternating) - that way her parents do not have to leave work and she doesn't feel like she has to stay home and be " sick " . When the fever hits she sometimes wants to sit and be held by one of us or just lay down for a while - we just accommodate what she needs. If she wants to just lay down and watch a video we let her but once her medicine kicks in she is usually up for playing. She is more quiet and less active but still plays. Check with your provider and see if you can bring a letter from the doctor stating that is not contagious and there is no danger to the other children and your son might be able to go to day care. Just a suggestion but I hope your child care will be open to the idea. Joanne Provider for Kimi 2 years old hannahls73 wrote: > My parents watch my son for me when he is sick - otherwise I have NO > idea how people cope. It has to be terribly hard. > > I hate not being with him when he's sick though - but I don't really > have any other choice - I am a teacher and they have to get subs etc. > to fill in for me . . . > > Good luck! > Hannah > Aidan - fevering 21 months - 3 years old > Sid - 5 > > Quote Link to comment Share on other sites More sharing options...
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