Guest guest Posted June 14, 2001 Report Share Posted June 14, 2001 Before my daughter Alison was born, a blockage was detected by detailed ultrasound. At the time I was not given any reason for this. For the delivery I was transferred to a maternity unit that was part of a specialist paediatric hospital so that we were close should surgery be necessary. I was also offered a Caeserian Section which I did not take up as the ultrasounds seemed to show that the blockage was clearing. When Alison was born, the blockage had not cleared and she required immediate surgery to remove the meconium ileus and an abcess it had caused on the bowel. Her bowel was, however, reconnected within two weeks and she might have been out of hospital the following week had it not been for all the bugs she picked up while in the neonatal ward. She would have recovered quicker in a room of her own. As it was she ended up being in hospital for 8 weeks all in. Apart from a very evident abdominal scar, she has suffered no other ill effects as a result of the operation. from Ayrshire, Scotland Mum of Alison (7 with CF) and (10 no CF) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2001 Report Share Posted June 14, 2001 Before my daughter Alison was born, a blockage was detected by detailed ultrasound. At the time I was not given any reason for this. For the delivery I was transferred to a maternity unit that was part of a specialist paediatric hospital so that we were close should surgery be necessary. I was also offered a Caeserian Section which I did not take up as the ultrasounds seemed to show that the blockage was clearing. When Alison was born, the blockage had not cleared and she required immediate surgery to remove the meconium ileus and an abcess it had caused on the bowel. Her bowel was, however, reconnected within two weeks and she might have been out of hospital the following week had it not been for all the bugs she picked up while in the neonatal ward. She would have recovered quicker in a room of her own. As it was she ended up being in hospital for 8 weeks all in. Apart from a very evident abdominal scar, she has suffered no other ill effects as a result of the operation. from Ayrshire, Scotland Mum of Alison (7 with CF) and (10 no CF) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2001 Report Share Posted June 14, 2001 Torsten, Hello. Glad to hear from you and see that you are still around. How is Fiona's health? I bet she is growing up fast, already 4 years old!!! na is doing great and has still not been in the hosptal or on IV meds. She has had some problems with sinus infections, but other than that she is great. This May was her 5th year with NO time in the hosptial so we are thankful for that. Her weight gain is a little slow but she is about at the 25 percentile. She went to her first year of public school this year...we were homeschooling her and her 6 yr. old sister, but it all became too much. She loved being in school and did great. Her and her sister also are in Girl Scouts, which they both are loving. The rest of the kids are also doing great, although we have had one get stitches and another broke her collar bone from falling...but other than that, all are healthy and rambuncious as ever! Write and let me know how Fiona is, and it has been great hearing from you. -mom to 4, #5 due in July Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2001 Report Share Posted June 14, 2001 Torsten, Hello. Glad to hear from you and see that you are still around. How is Fiona's health? I bet she is growing up fast, already 4 years old!!! na is doing great and has still not been in the hosptal or on IV meds. She has had some problems with sinus infections, but other than that she is great. This May was her 5th year with NO time in the hosptial so we are thankful for that. Her weight gain is a little slow but she is about at the 25 percentile. She went to her first year of public school this year...we were homeschooling her and her 6 yr. old sister, but it all became too much. She loved being in school and did great. Her and her sister also are in Girl Scouts, which they both are loving. The rest of the kids are also doing great, although we have had one get stitches and another broke her collar bone from falling...but other than that, all are healthy and rambuncious as ever! Write and let me know how Fiona is, and it has been great hearing from you. -mom to 4, #5 due in July Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2001 Report Share Posted October 23, 2001 Hi - My name is Sheryl and I have cold urticaria too. I receive and read all of this group's messages but I don't speak up too often. I was just diagnosed this past February. Actually I diagnosed myself and then went to an allergist who confirmed it. As others are telling you - they cannot figure out why it started, why it happens or how to cure it. Right now I take 90mg of Allegra and that seems to help for the most part. I absolutely hate taking any kind of medication so I feel fortunate to be maintained on just that small dose of medicine. I am very frustrated with the medical community - they just shrug it off and give you medication to contol the symptoms, after they rule out certain things like cancer, lupus, and other blood diseases (well thank goodness I don't have any of those). I have tried many things to help myself - special diets, holistic doctors, chiropractors, and although I feel healthier for going through these things, it hasn't helped my hives. Sometimes, not always, when my body experiences a temperature drop, enough to give me goosebumps, I will start to burn over patched of my skin. It sometimes, but not always, is on skin that is exposed or cold. For example, my legs may be cold but my arms will start to burn. The burning is similar to having a bad sunburn. I become red and blotchy and the blotchy areas are hot to the touch. Then I start to itch. It fades away in about 15-30 minutes. It is worse on damp days. Sometimes the temperature change in going from one room to another room in my house would set it off. When I discovered what I had, I went into a very deep depression and was afraid to leave the house. My allergist gave me the epi-pen and I freaked and started crying. The thought that temperature change could ultimately make me go into anaphylactic shock was too much. I always had a problem with anxiety and now I had reason to be afraid of temperature! I tried to explain to people how I was allergic to cold and of course no one knew how to take it. I was absulutely loving the summer because I was free to come and go outside as I pleased. I almost never used the air conditioner. We kept the bedroom at 79 degrees. I am getting very depressed again becuase it is turning dark and cold here (I live in New Jersey) and I am afraid for when it gets very cold and snowy. I don't know how I will be able to live a normal life. Will I just itch and be uncomforatble for a few minutes or will it progress and put me into an emergency situation. For someone who already has an anxiety problem, this has been a cruel joke to me. My husband has been extremely supportive though this. I even brought up the fact of moving to a more temperate climate like San Diego, and he would go for it if it would help me. We said we'd see how I did through this winter. I'm also starting a new business - a clothing boutique opening in January, and I am afraid as to how this will limit my activities. Of course I can regulate the temperature in the store and I will keep it at a constant 79 degrees. Hopefully I won't scare too many customers away. I'm interested to hear more about your experiences with cold urticaria. Be well. -Sheryl __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2001 Report Share Posted October 24, 2001 Hi Sheryl, Sorry you are feeling overwhelmed with everything. You are at the right place! The people on this list are wonderful and you will learn so many things. Good luck with your shop. I think it will be the best thing for you! Keep us posted on how you are doing. Ann > >Reply-To: urticaria >To: urticaria >Subject: Re: Newbie >Date: Tue, 23 Oct 2001 19:14:04 -0700 (PDT) > >Hi - > >My name is Sheryl and I have cold urticaria too. I >receive and read all of this group's messages but I >don't speak up too often. I was just diagnosed this >past February. Actually I diagnosed myself and then >went to an allergist who confirmed it. As others are >telling you - they cannot figure out why it started, >why it happens or how to cure it. Right now I take >90mg of Allegra and that seems to help for the most >part. I absolutely hate taking any kind of medication >so I feel fortunate to be maintained on just that >small dose of medicine. I am very frustrated with the >medical community - they just shrug it off and give >you medication to contol the symptoms, after they rule >out certain things like cancer, lupus, and other blood >diseases (well thank goodness I don't have any of >those). I have tried many things to help myself - >special diets, holistic doctors, chiropractors, and >although I feel healthier for going through these >things, it hasn't helped my hives. > >Sometimes, not always, when my body experiences a >temperature drop, enough to give me goosebumps, I will >start to burn over patched of my skin. It sometimes, >but not always, is on skin that is exposed or cold. >For example, my legs may be cold but my arms will >start to burn. The burning is similar to having a bad >sunburn. I become red and blotchy and the blotchy >areas are hot to the touch. Then I start to itch. It >fades away in about 15-30 minutes. It is worse on >damp days. Sometimes the temperature change in going >from one room to another room in my house would set it >off. > >When I discovered what I had, I went into a very deep >depression and was afraid to leave the house. My >allergist gave me the epi-pen and I freaked and >started crying. The thought that temperature change >could ultimately make me go into anaphylactic shock >was too much. I always had a problem with anxiety and >now I had reason to be afraid of temperature! I >tried to explain to people how I was allergic to cold >and of course no one knew how to take it. >I was absulutely loving the summer because I was free >to come and go outside as I pleased. I almost never >used the air conditioner. We kept the bedroom at 79 >degrees. I am getting very depressed again becuase it >is turning dark and cold here (I live in New Jersey) >and I am afraid for when it gets very cold and snowy. >I don't know how I will be able to live a normal life. > Will I just itch and be uncomforatble for a few >minutes or will it progress and put me into an >emergency situation. For someone who already has an >anxiety problem, this has been a cruel joke to me. > >My husband has been extremely supportive though this. >I even brought up the fact of moving to a more >temperate climate like San Diego, and he would go for >it if it would help me. We said we'd see how I did >through this winter. I'm also starting a new business >- a clothing boutique opening in January, and I am >afraid as to how this will limit my activities. Of >course I can regulate the temperature in the store and >I will keep it at a constant 79 degrees. Hopefully I >won't scare too many customers away. > >I'm interested to hear more about your experiences >with cold urticaria. Be well. > >-Sheryl > > > > >__________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2001 Report Share Posted October 24, 2001 Sheryl, I have dermographism and it seems to be worse in the winter. I do not have cold urt. I have been tested for everything and I am questioning the results of some of the tests at this point. One test that comes up positive every time is the thyroid antibody test, so I definately have Hashimotos Thyroiditis, however my thyroid hormone levels are normal!! I also had a root canal that just never settled down about 3 years ago. I eventually had a apicoectomy to remove the infection from the roots this year. This did not cure it, nor did I experience relief while on the antibiotic. Have you had any dental work lately? Make sure your teeth don't harbor any hidden infections. I take 180 mg of allegra twice a day and try to hold off on the night dose. I will still flare occasionally. The specialist (soon to be my x-specialist) had me try doxipin. It was great but left me in a fog during the day and I could develop a tolerance to it. The greatest problem I have found is trying to find a doctor who will stick with it and take more tests and retest. They think I am chasing ghosts! I have an allergist, a specialist (who thinks I am a nut), an endocrinoligist, the OBGYN and 2 GP's (when I wear one out, I go to the other). I have not done anything significant since last July. My next tactic, is to find a good internest who will coordinate all these doctors and make them " play nice " together. Don't give up, get more advice, keep a copy of all your test results, try several elimination diets, check the dental connection, check for hidden sinus infections, check for hidden problems in the thyroid and kidneys. Don't stop trying. I hope this helps. in Pa. > >Reply-To: urticaria >To: urticaria >Subject: Re: Newbie >Date: Tue, 23 Oct 2001 19:14:04 -0700 (PDT) > >Hi - > >My name is Sheryl and I have cold urticaria too. I >receive and read all of this group's messages but I >don't speak up too often. I was just diagnosed this >past February. Actually I diagnosed myself and then >went to an allergist who confirmed it. As others are >telling you - they cannot figure out why it started, >why it happens or how to cure it. Right now I take >90mg of Allegra and that seems to help for the most >part. I absolutely hate taking any kind of medication >so I feel fortunate to be maintained on just that >small dose of medicine. I am very frustrated with the >medical community - they just shrug it off and give >you medication to contol the symptoms, after they rule >out certain things like cancer, lupus, and other blood >diseases (well thank goodness I don't have any of >those). I have tried many things to help myself - >special diets, holistic doctors, chiropractors, and >although I feel healthier for going through these >things, it hasn't helped my hives. > >Sometimes, not always, when my body experiences a >temperature drop, enough to give me goosebumps, I will >start to burn over patched of my skin. It sometimes, >but not always, is on skin that is exposed or cold. >For example, my legs may be cold but my arms will >start to burn. The burning is similar to having a bad >sunburn. I become red and blotchy and the blotchy >areas are hot to the touch. Then I start to itch. It >fades away in about 15-30 minutes. It is worse on >damp days. Sometimes the temperature change in going >from one room to another room in my house would set it >off. > >When I discovered what I had, I went into a very deep >depression and was afraid to leave the house. My >allergist gave me the epi-pen and I freaked and >started crying. The thought that temperature change >could ultimately make me go into anaphylactic shock >was too much. I always had a problem with anxiety and >now I had reason to be afraid of temperature! I >tried to explain to people how I was allergic to cold >and of course no one knew how to take it. >I was absulutely loving the summer because I was free >to come and go outside as I pleased. I almost never >used the air conditioner. We kept the bedroom at 79 >degrees. I am getting very depressed again becuase it >is turning dark and cold here (I live in New Jersey) >and I am afraid for when it gets very cold and snowy. >I don't know how I will be able to live a normal life. > Will I just itch and be uncomforatble for a few >minutes or will it progress and put me into an >emergency situation. For someone who already has an >anxiety problem, this has been a cruel joke to me. > >My husband has been extremely supportive though this. >I even brought up the fact of moving to a more >temperate climate like San Diego, and he would go for >it if it would help me. We said we'd see how I did >through this winter. I'm also starting a new business >- a clothing boutique opening in January, and I am >afraid as to how this will limit my activities. Of >course I can regulate the temperature in the store and >I will keep it at a constant 79 degrees. Hopefully I >won't scare too many customers away. > >I'm interested to hear more about your experiences >with cold urticaria. Be well. > >-Sheryl > > > > >__________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2001 Report Share Posted October 24, 2001 Thanks for your advice - I have pretty much given up on doctors in trying to figure out this thing. I get so much more information from this group and from my own research on the internet. I end up teaching the doctors about it. I have been to 2 allergists, 2 dermatologists, 2 GPs, and also discussed it with my gyno. One allergist wanted to immediately start me on Prednisone + about 4 other medications - all this while not have any symptoms. Unless I am in a life-threatening situation, I will absolutely not take Prednisone. I have learned so much from the group regarding its " real-life " side effects (as opposed to the info that the doctor makes sound minimal). I have had a lot of dental work done. I am 38 years old and I wear braces! I also have had numerous root canals and crowns. I have had dental infections before as well. I have asked to have all of my teeth just pulled already and they tell me that my gums and bone are strong - I just have weak teeth. They won't pull them. One of the first things I checked on when I joined this group was my teeth. Went to my dentist and oral surgeon, had regular and digital X-rays and all was amazingly OK. Tommorrow I go to the orthodontist to have my wires tightened but that's another painful story. I had a physical in June - OK, a gyno checkup 2 weeks ago - OK, bloodwork drawn by my allergist 6 months ago including a CBC, TSH, ANA, and CA-125 - all OK. The one thing that they did find is that I tested positive for H-Pylori. I followed up with a gastroenterologist and he said if I don't have any digestive difficulties then he suggests to just not treat it. Although there might be a link to my hives, I am very wary of the medications to treat it and will hold off on it for now. Also - just because the blood test shows I have antibodies built up for it doesn't mean I actually have the bacteria. Did you know that overall 20% of the people in the US would test positive for it and almost half of people over 50 would test positive for it? So something is going on in my body that wasn't going on last year and I guess like the rest of us I have to play detective to figure it out. I'm curious about your thyroid - your hormone levels are normal but your antibodies test positive? I'm wondering how this could be? -Sheryl --- Parlatore wrote: > Sheryl, > > I have dermographism and it seems to be worse in the > winter. I do not have > cold urt. I have been tested for everything and I > am questioning the > results of some of the tests at this point. One > test that comes up positive > every time is the thyroid antibody test, so I > definately have Hashimotos > Thyroiditis, however my thyroid hormone levels are > normal!! I also had a > root canal that just never settled down about 3 > years ago. I eventually had > a apicoectomy to remove the infection from the roots > this year. This did > not cure it, nor did I experience relief while on > the antibiotic. Have you > had any dental work lately? Make sure your teeth > don't harbor any hidden > infections. I take 180 mg of allegra twice a day > and try to hold off on the > night dose. I will still flare occasionally. The > specialist (soon to be my > x-specialist) had me try doxipin. It was great but > left me in a fog during > the day and I could develop a tolerance to it. > > The greatest problem I have found is trying to find > a doctor who will stick > with it and take more tests and retest. They think > I am chasing ghosts! I > have an allergist, a specialist (who thinks I am a > nut), an endocrinoligist, > the OBGYN and 2 GP's (when I wear one out, I go to > the other). I have not > done anything significant since last July. My next > tactic, is to find a > good internest who will coordinate all these doctors > and make them " play > nice " together. > > Don't give up, get more advice, keep a copy of all > your test results, try > several elimination diets, check the dental > connection, check for hidden > sinus infections, check for hidden problems in the > thyroid and kidneys. > Don't stop trying. > > I hope this helps. > > in Pa. > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2001 Report Share Posted November 28, 2001 Hi Everyone I found this list last night and am so pleased to have other people to talk to over this urticaria problem, (Curse!) lol. I thought that I had sent an e-mail to the list from the web site, but seems not as it hasn't appeared so I will tell you a wee bit about myself. I have suffered with urticaria for about 12 years though I can't remember the right amount of years now. It started when I took some tablets from Dr. can't remember what these were either, and my wrists started to swell straight away. My Dr is only just up the road to me and I can walk in so told him and he just said stop the tablets. Then my troubles began. Any pressure can set lumps and bumps off which I have learnt to live with, even if it drives me mad. This past year or so though I have had more really bad attacks that have put me to bed for 3/4 days. Before I would have a really bad attack about 3 times a year. These are the worse times along with if the bottom of my feet, palms of hands and face swell. I literally can't walk and cry just trying to get to the loo. 10 yards from front room, ( I live in a small flat). If I out on a different pair of shoes they will set off lumps, I then leave them for a day and bingo I can wear them ok! I have just decorated my bedroom and my hands swell at first, leave it for a day and away I can go though I will still get a few lumps. I have to carry on though or my life would come to a stand still. I have said to my Mum when really ill, that the best thing for me would be to float on air! lol as any pressure then, like lying in bed causes lumps At the moment I am in the process of trying to get the council to change my fire from coal to electric. they have refused me once but I am determined to get this changed this time. Trying to explain this condition is really hard but I have photos and last night while surfing got loads of information and photos of people with urticaria. These will be flung on their desk if I am refused. lol I am a 46 year old woman with 2 grown up sons that live 500 miles away down in Cornwall, so they can't help. I am married to and he is in poor health and can't do housework of any kind so this is affecting both of us. Well, I hope this give a wee insight to me and I am looking forward to listening to people with their troubles and hope to help when I am well I do hope that everyone is well at this moment Take care all Berenice in Ayrshire, Scotland Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2001 Report Share Posted November 28, 2001 Hi -alena's Mom and all Thank you for your welcome. Sorry Mom. I have an English accent. Married a Scotsman and have lived here for over 20 years. haven't picked up accent, just local words. I take antihistimes. I have tried everyone in the book but nothing seems to work. I have taken them constantly and then only when I feel a bit of an attack coming on. Since last attack. 2 weeks ago I have taken nothing. My Dr hasn't given me anything els. I see that a fe w people recommened anti-depressants! Don't know what my Doc would say to that :0. I have asked him after all these year if i could see an Immunoligist. He did say yes but we both agreed that we don't hold out much hope and now that I have seen other people and thier situation I am going to have to come to terms with it for life. I have really deep down but thought that if I went to Immunoligist at least I have tried every path. I have had not tests as doc and I knew that it isn't anything I eat etc. I had another attack about 6 weeks ago and I actually went to the hospital as I felt so ill and was sick of being sick. I got a Dr that had a friend with this and he told me there wasn't anything he could do. This was the first person that I have found to know someone with urticaria. I know when I am in for a bad attack as I get a sore throat!! I get lumps and bumps EVERYDAY. I have had 1 remission for about 4 months a few years ago. I also am now getting sore knee joints. thought it was old age but then tied it in with attacks! I haven't taken ANY steriods so can't blame that. I don't think my Doc would give me them anyway because of side effects and the old bones later in life. Us women have enough worry with the change of life! lol I have Pressure Urticaria. I have only just found out the proper name as I didn't really look into it until now with the attacks happening so often. I called it an allergy for easyness. Lots of people don't know the word urticaria. I am only just learning to spell it. lol. Knew what it was though. Funny you say about dentists. I went to the other Dr at our surgery and told him I had to have a tooth out, (Had one out before but wasn't worried). He told me " NO need to concer yourself about it " !! Of course I was worried. About my throat closing!! Anyway I was fine. Now sitting here with no front teeth. lol. Falsers in bathroom. lol I hope your girls are fine at the moment Mom. I don't know anything about their illness but give them a hug from me. Bye for now Berenice in Ayrshire, Scotland where it is raining hard >>Hi Bernenice and welcome. Ohhh I would just love to really hear your accent ;o) I am so glad you found us and so sorry to hear you have been suffering for so long. What medications are you currently on? What have you been tested for? What other symptoms do you have if any? Have you had any dental work done that might be bad? Any root canals? There are a million causes for CU but sometimes it can be found and hopefully we can help you find yours. Ohhhh I hope they can give you proper heat soon. Coal heat is so awful. My inlaws in Turkey finally were able to switch and it was a blessing as my mother in law has some serious health problems one being asthama. Do you know what triggers your urticaria? Do you have one particular type that you know of? Hang in there. You are not alone ) Love, ~Alena's Mom<< Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2001 Report Share Posted November 28, 2001 Hi -alena's Mom and all Thank you for your welcome. Sorry Mom. I have an English accent. Married a Scotsman and have lived here for over 20 years. haven't picked up accent, just local words. I take antihistimes. I have tried everyone in the book but nothing seems to work. I have taken them constantly and then only when I feel a bit of an attack coming on. Since last attack. 2 weeks ago I have taken nothing. My Dr hasn't given me anything els. I see that a fe w people recommened anti-depressants! Don't know what my Doc would say to that :0. I have asked him after all these year if i could see an Immunoligist. He did say yes but we both agreed that we don't hold out much hope and now that I have seen other people and thier situation I am going to have to come to terms with it for life. I have really deep down but thought that if I went to Immunoligist at least I have tried every path. I have had not tests as doc and I knew that it isn't anything I eat etc. I had another attack about 6 weeks ago and I actually went to the hospital as I felt so ill and was sick of being sick. I got a Dr that had a friend with this and he told me there wasn't anything he could do. This was the first person that I have found to know someone with urticaria. I know when I am in for a bad attack as I get a sore throat!! I get lumps and bumps EVERYDAY. I have had 1 remission for about 4 months a few years ago. I also am now getting sore knee joints. thought it was old age but then tied it in with attacks! I haven't taken ANY steriods so can't blame that. I don't think my Doc would give me them anyway because of side effects and the old bones later in life. Us women have enough worry with the change of life! lol I have Pressure Urticaria. I have only just found out the proper name as I didn't really look into it until now with the attacks happening so often. I called it an allergy for easyness. Lots of people don't know the word urticaria. I am only just learning to spell it. lol. Knew what it was though. Funny you say about dentists. I went to the other Dr at our surgery and told him I had to have a tooth out, (Had one out before but wasn't worried). He told me " NO need to concer yourself about it " !! Of course I was worried. About my throat closing!! Anyway I was fine. Now sitting here with no front teeth. lol. Falsers in bathroom. lol I hope your girls are fine at the moment Mom. I don't know anything about their illness but give them a hug from me. Bye for now Berenice in Ayrshire, Scotland where it is raining hard >>Hi Bernenice and welcome. Ohhh I would just love to really hear your accent ;o) I am so glad you found us and so sorry to hear you have been suffering for so long. What medications are you currently on? What have you been tested for? What other symptoms do you have if any? Have you had any dental work done that might be bad? Any root canals? There are a million causes for CU but sometimes it can be found and hopefully we can help you find yours. Ohhhh I hope they can give you proper heat soon. Coal heat is so awful. My inlaws in Turkey finally were able to switch and it was a blessing as my mother in law has some serious health problems one being asthama. Do you know what triggers your urticaria? Do you have one particular type that you know of? Hang in there. You are not alone ) Love, ~Alena's Mom<< Quote Link to comment Share on other sites More sharing options...
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