Guest guest Posted November 21, 2001 Report Share Posted November 21, 2001 In a message dated 11/20/01 12:05:17 PM Pacific Standard Time, kath1@... writes: << Does anyone else have throat pain? >> Kathleen, Yes I have throat pain and it has just started the past few months. I am waiting for an appt with the pulmonologist too. hugs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2001 Report Share Posted November 21, 2001 In a message dated 11/20/01 12:05:17 PM Pacific Standard Time, kath1@... writes: << Does anyone else have throat pain? >> Kathleen, Yes I have throat pain and it has just started the past few months. I am waiting for an appt with the pulmonologist too. hugs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2001 Report Share Posted December 10, 2001 Hi Carol, It could be your thyroid? Have them do some blood work. Could also be anxiety. Did they do any blood work at the hospital when you went? Please let us know what you find out. Take care, Lu My heart keeps pulsating off and on. It was so bad last night I almost went to hosp. It went away. I have no sharp pains with it. Im wondering if it is jus anxiety attacks or if it has something to do with the RP. Besides being on 10m of predizone I am also on Nexium for heartburn. Any ideas???? Thanks Carol Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2001 Report Share Posted December 10, 2001 Hi Carol, It could be your thyroid? Have them do some blood work. Could also be anxiety. Did they do any blood work at the hospital when you went? Please let us know what you find out. Take care, Lu My heart keeps pulsating off and on. It was so bad last night I almost went to hosp. It went away. I have no sharp pains with it. Im wondering if it is jus anxiety attacks or if it has something to do with the RP. Besides being on 10m of predizone I am also on Nexium for heartburn. Any ideas???? Thanks Carol Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 18, 2001 Report Share Posted December 18, 2001 Susiecue, I have a balance problem, but no dizziness. It sounds like you need to call the dr... I'm so sorry that you are feeling so bad. I think we have all been there and can sympathize. There have been days when I don't even get dressed or out of bed (and that is a real rare thing for me.) It was real hard for me to learn to slow down. Mine started with fibro though...I still think that my fibro is what gets me down. I raised my pred to 10mg and am feeling better though. Hope the Plaquenil kicks in soon so I can get back down. Maybe after the holidays when all the stress is gone. LOL Our chats are at 11:30am central time on Wed. I hope that's right. LOL I have a hard time too. Gosh...I hope I gave you the right answer...if not I'm sure someone will correct me.. I'm on Pacific time. I sure hope you get to feeling better soon.. I'd sure call the dr about your dizziness and your eyes. Don't wait... Please!!! Take care of YOU!! You make us worry... yes.. there are a few of us worry warts out here .....so don't help us get ulcers. Hope you have some better news when I get back. hugs claudia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 18, 2001 Report Share Posted December 18, 2001 Susiecue, I have a balance problem, but no dizziness. It sounds like you need to call the dr... I'm so sorry that you are feeling so bad. I think we have all been there and can sympathize. There have been days when I don't even get dressed or out of bed (and that is a real rare thing for me.) It was real hard for me to learn to slow down. Mine started with fibro though...I still think that my fibro is what gets me down. I raised my pred to 10mg and am feeling better though. Hope the Plaquenil kicks in soon so I can get back down. Maybe after the holidays when all the stress is gone. LOL Our chats are at 11:30am central time on Wed. I hope that's right. LOL I have a hard time too. Gosh...I hope I gave you the right answer...if not I'm sure someone will correct me.. I'm on Pacific time. I sure hope you get to feeling better soon.. I'd sure call the dr about your dizziness and your eyes. Don't wait... Please!!! Take care of YOU!! You make us worry... yes.. there are a few of us worry warts out here .....so don't help us get ulcers. Hope you have some better news when I get back. hugs claudia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2001 Report Share Posted December 19, 2001 --- Ted Staniec wrote: > Does anyone have problems with dizzy spells. I have > been having them a lot. > Susiecue > I don't have an answer for you, but I had terrible dizziness and vertigo when this all started. When I got on medications it went away and the only time I have it now is if my med's aren't just right. Hope you contact your doctor. Good luck, Sharon ===== __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2001 Report Share Posted December 19, 2001 --- Ted Staniec wrote: > Does anyone have problems with dizzy spells. I have > been having them a lot. > Susiecue > I don't have an answer for you, but I had terrible dizziness and vertigo when this all started. When I got on medications it went away and the only time I have it now is if my med's aren't just right. Hope you contact your doctor. Good luck, Sharon ===== __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2001 Report Share Posted December 19, 2001 Susiecue, Yes I get dizzy spells too. I also noticed this summer when I was swimming if I did a flip in the pool (showing off my swimming prowess for my 6 yr. old son) it felt like I was going to pass right out from the dizziness -- won't be doing that again. It had never happened before! I never really thought about it being related to the RP but sounds like it is. Hope you get to feeling better soon. -----Original Message-----From: Ted Staniec Sent: Wednesday, December 19, 2001 12:34 AMTo: rpolychondritis Subject: question Does anyone have problems with dizzy spells. I have been having them a lot. It doesn't matter if I get up from sitting slowly, normally or fast. Does anyone have problems with falling. I have lost my balance when I reached for wrapping paper on the chair next to me & fell off the chair, or when I've knelt down I lost my balance & fell. I'm still flaring and am still on 60 mg pred. My hubby has cleaned up from dinner last night & tonight because I just can't do it. My face is real bad. I plan to rest tomorrow, I only did lunch out today & then slept in the chair for an hour this afternoon. I got my hair cut yesterday but that was a morale boost that I needed. Thursday my youngest daughter is having carpal tunnel surgery but that should only be a couple of hours in the morning. Friday is her party at work at lunch time so I will take her there. I'm hoping they will ask me to stay otherwise I will find something to do. What time is the chats on Weds. mornings central time. I'd like to get in on them but I don't how to figure the time zone, I feel like I'm brain dead. My eyes have been real bad again. They are blurry & yesterday there were two yellow lights & two green lights on top of each other so I don't know if it's double vision or not. This is really getting me down. I don't think I like this. Hope you all have a warm & merry holiday season. SusiecueDISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2001 Report Share Posted December 19, 2001 Susiecue, Yes I get dizzy spells too. I also noticed this summer when I was swimming if I did a flip in the pool (showing off my swimming prowess for my 6 yr. old son) it felt like I was going to pass right out from the dizziness -- won't be doing that again. It had never happened before! I never really thought about it being related to the RP but sounds like it is. Hope you get to feeling better soon. -----Original Message-----From: Ted Staniec Sent: Wednesday, December 19, 2001 12:34 AMTo: rpolychondritis Subject: question Does anyone have problems with dizzy spells. I have been having them a lot. It doesn't matter if I get up from sitting slowly, normally or fast. Does anyone have problems with falling. I have lost my balance when I reached for wrapping paper on the chair next to me & fell off the chair, or when I've knelt down I lost my balance & fell. I'm still flaring and am still on 60 mg pred. My hubby has cleaned up from dinner last night & tonight because I just can't do it. My face is real bad. I plan to rest tomorrow, I only did lunch out today & then slept in the chair for an hour this afternoon. I got my hair cut yesterday but that was a morale boost that I needed. Thursday my youngest daughter is having carpal tunnel surgery but that should only be a couple of hours in the morning. Friday is her party at work at lunch time so I will take her there. I'm hoping they will ask me to stay otherwise I will find something to do. What time is the chats on Weds. mornings central time. I'd like to get in on them but I don't how to figure the time zone, I feel like I'm brain dead. My eyes have been real bad again. They are blurry & yesterday there were two yellow lights & two green lights on top of each other so I don't know if it's double vision or not. This is really getting me down. I don't think I like this. Hope you all have a warm & merry holiday season. SusiecueDISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2001 Report Share Posted December 19, 2001 , A couple of months ago my equilibreum (sp) was so bad I was put on high doses of medication. I could not lie down on my back or right side without the entire room spinning and causing extreme nausea. I was told by my rhemy that this was present in 35% of RP patients. Just another strange thing that happens to us when we have this disease. Hope everyone on the site has a great Christmas and a Happy New Year. Rita Montgomery, AL --- wrote: > Susiecue, > > Yes I get dizzy spells too. I also noticed this > summer when I was swimming > if I did a flip in the pool (showing off my swimming > prowess for my 6 yr. > old son) it felt like I was going to pass right out > from the dizziness -- > won't be doing that again. It had never happened > before! I never really > thought about it being related to the RP but sounds > like it is. Hope you > get to feeling better soon. > > > question > > > Does anyone have problems with dizzy spells. I > have been having them a > lot. It doesn't matter if I get up from sitting > slowly, normally or fast. > Does anyone have problems with falling. I have lost > my balance when I > reached for wrapping paper on the chair next to me & > fell off the chair, or > when I've knelt down I lost my balance & fell. > > I'm still flaring and am still on 60 mg pred. My > hubby has cleaned up > from dinner last night & tonight because I just > can't do it. My face is > real bad. I plan to rest tomorrow, I only did lunch > out today & then slept > in the chair for an hour this afternoon. I got my > hair cut yesterday but > that was a morale boost that I needed. Thursday my > youngest daughter is > having carpal tunnel surgery but that should only be > a couple of hours in > the morning. Friday is her party at work at lunch > time so I will take her > there. I'm hoping they will ask me to stay > otherwise I will find something > to do. > > What time is the chats on Weds. mornings central > time. I'd like to get in > on them but I don't how to figure the time zone, I > feel like I'm brain dead. > > My eyes have been real bad again. They are blurry > & yesterday there were > two yellow lights & two green lights on top of each > other so I don't know if > it's double vision or not. This is really getting > me down. I don't think I > like this. > > Hope you all have a warm & merry holiday season. > > Susiecue > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2001 Report Share Posted December 19, 2001 , A couple of months ago my equilibreum (sp) was so bad I was put on high doses of medication. I could not lie down on my back or right side without the entire room spinning and causing extreme nausea. I was told by my rhemy that this was present in 35% of RP patients. Just another strange thing that happens to us when we have this disease. Hope everyone on the site has a great Christmas and a Happy New Year. Rita Montgomery, AL --- wrote: > Susiecue, > > Yes I get dizzy spells too. I also noticed this > summer when I was swimming > if I did a flip in the pool (showing off my swimming > prowess for my 6 yr. > old son) it felt like I was going to pass right out > from the dizziness -- > won't be doing that again. It had never happened > before! I never really > thought about it being related to the RP but sounds > like it is. Hope you > get to feeling better soon. > > > question > > > Does anyone have problems with dizzy spells. I > have been having them a > lot. It doesn't matter if I get up from sitting > slowly, normally or fast. > Does anyone have problems with falling. I have lost > my balance when I > reached for wrapping paper on the chair next to me & > fell off the chair, or > when I've knelt down I lost my balance & fell. > > I'm still flaring and am still on 60 mg pred. My > hubby has cleaned up > from dinner last night & tonight because I just > can't do it. My face is > real bad. I plan to rest tomorrow, I only did lunch > out today & then slept > in the chair for an hour this afternoon. I got my > hair cut yesterday but > that was a morale boost that I needed. Thursday my > youngest daughter is > having carpal tunnel surgery but that should only be > a couple of hours in > the morning. Friday is her party at work at lunch > time so I will take her > there. I'm hoping they will ask me to stay > otherwise I will find something > to do. > > What time is the chats on Weds. mornings central > time. I'd like to get in > on them but I don't how to figure the time zone, I > feel like I'm brain dead. > > My eyes have been real bad again. They are blurry > & yesterday there were > two yellow lights & two green lights on top of each > other so I don't know if > it's double vision or not. This is really getting > me down. I don't think I > like this. > > Hope you all have a warm & merry holiday season. > > Susiecue > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2001 Report Share Posted December 19, 2001 Susiecue, I have been suffering from dizziness for several years. I have to be very careful about looking up or bending over because I lose my balance and fall. I was treated several weeks ago for vertigo at the Cleveland Clinic and it worked but I still have the other dizziness. Sandy Does anyone have problems with dizzy spells. I have been having them a lot. It doesn't matter if I get up from sitting slowly, normally or fast. Does anyone have problems with falling. I have lost my balance when I reached for wrapping paper on the chair next to me & fell off the chair, or when I've knelt down I lost my balance & fell. I'm still flaring and am still on 60 mg pred. My hubby has cleaned up from dinner last night & tonight because I just can't do it. My face is real bad. I plan to rest tomorrow, I only did lunch out today & then slept in the chair for an hour this afternoon. I got my hair cut yesterday but that was a morale boost that I needed. Thursday my youngest daughter is having carpal tunnel surgery but that should only be a couple of hours in the morning. Friday is her party at work at lunch time so I will take her there. I'm hoping they will ask me to stay otherwise I will find something to do. What time is the chats on Weds. mornings central time. I'd like to get in on them but I don't how to figure the time zone, I feel like I'm brain dead. My eyes have been real bad again. They are blurry & yesterday there were two yellow lights & two green lights on top of each other so I don't know if it's double vision or not. This is really getting me down. I don't think I like this. Hope you all have a warm & merry holiday season. SusiecueDISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2001 Report Share Posted December 19, 2001 Susiecue, I have been suffering from dizziness for several years. I have to be very careful about looking up or bending over because I lose my balance and fall. I was treated several weeks ago for vertigo at the Cleveland Clinic and it worked but I still have the other dizziness. Sandy Does anyone have problems with dizzy spells. I have been having them a lot. It doesn't matter if I get up from sitting slowly, normally or fast. Does anyone have problems with falling. I have lost my balance when I reached for wrapping paper on the chair next to me & fell off the chair, or when I've knelt down I lost my balance & fell. I'm still flaring and am still on 60 mg pred. My hubby has cleaned up from dinner last night & tonight because I just can't do it. My face is real bad. I plan to rest tomorrow, I only did lunch out today & then slept in the chair for an hour this afternoon. I got my hair cut yesterday but that was a morale boost that I needed. Thursday my youngest daughter is having carpal tunnel surgery but that should only be a couple of hours in the morning. Friday is her party at work at lunch time so I will take her there. I'm hoping they will ask me to stay otherwise I will find something to do. What time is the chats on Weds. mornings central time. I'd like to get in on them but I don't how to figure the time zone, I feel like I'm brain dead. My eyes have been real bad again. They are blurry & yesterday there were two yellow lights & two green lights on top of each other so I don't know if it's double vision or not. This is really getting me down. I don't think I like this. Hope you all have a warm & merry holiday season. SusiecueDISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2003 Report Share Posted January 27, 2003 Margo, my son has been on Flovent for 8 years no problems here. > " >Reply-To: cfparents >To: cfparents >Subject: Question >Date: Mon, 27 Jan 2003 06:31:00 -0000 > >my daughter uses Flovent once in the morning and again at night. >Does any one else have problems with swollen glands with the use of >this? >Margo, mother of Amber 14 w/cf > > >------------------------------------------- >The opinions and information exchanged on this list should IN NO WAY >be construed as medical advice. > >PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR >TREATMENTS. > >------------------------------------ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2003 Report Share Posted February 28, 2003 Hi , I had cvs testing when I was pregnant with my second son. It was done at 12 weeks. Thankfully he is only a carrier. What a joy that was to hear. My older son now 9 wcf was 4 at the time. If you have any questions you can email me privately Mom to Josh 9 wcf and 4 nocf but wants to do therapy for his brother. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2003 Report Share Posted February 28, 2003 Hi , Today's post is a rare thing. It hit a sore nerve in those who cherish their children. CF and all. My son is 14 and a middle child. We had his sister a year after he was born. He was not diagnosed at that time so no CF test done. My second daughter was from a different marriage. She was tested as an infant at the suggestion of our CF team. No CF. Almost 2 years ago I got pregnant with twins. Because I was almost 35 at the time and there were concerns about one of the babies, ton's of tests were done. They were tested for CF at this time, somewhere around my 5th month. I think that the only reason that they tested for Cf is that I already had a child with it. Question > Hello all. I'm almost somewhat hesitant to bring up my question after > reading today's post but here goes anyway. I'm already a mom to 4, > our last child was born with CF who will be 5 next month. We > have recently just found out that we are expecting again. My question > is whether anyone out there has been in this situation and did you > have any testing during prenancy for CF or did you wait until after > they were born to have test done. Just curious. Thanks. > > , > Mom to 11wocf, Nikki 9wocf, Luke 6wocf and 4 wcf > > > > ------------------------------------------- > The opinions and information exchanged on this list should IN NO WAY > be construed as medical advice. > > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. > > ------------------------------------ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2003 Report Share Posted February 28, 2003 Bless your heart. What a *@%!!! day for you to have to come aboard and ask this question. I have not been in your situation...yet. This is a very personal thing that you and your partner have to decide. We will love and help you what ever happens. We thought I was pregnant last month. Oh, well. Personally, we were going to do an amnio because we know the mutations. That way we could know wether to have the baby at a bigger hospital than ours. You, know, just in case... I am sorry for the flames. We usually don't behave in such a way. Dawn mom of 4, 7 and under, the youngest wcf Question Hello all. I'm almost somewhat hesitant to bring up my question after reading today's post but here goes anyway. I'm already a mom to 4, our last child was born with CF who will be 5 next month. We have recently just found out that we are expecting again. My question is whether anyone out there has been in this situation and did you have any testing during prenancy for CF or did you wait until after they were born to have test done. Just curious. Thanks. , Mom to 11wocf, Nikki 9wocf, Luke 6wocf and 4 wcf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2003 Report Share Posted March 1, 2003 Hi , we had a CVS done at 14 weeks (we're always a little bit late here in Germany, smile!) to find out that our son won't have CF. Of course that was a great relief. Since the CVS implies a higher risk for a miscarriage it's only recommendable if you consider an abortion. If you just want to know what to expect, than I would opt for an amniocentesis. Family planning always is a hot and very personal topic. Amber asked a very good question and got some very good answers. And I would compare Becky A's message with a flagrant foul in a basketball match. She obviously needs a time-out, but I think we should allow her to return and " play " with us after she has cooled down. I have to admit that I couldn't understand why people want to have more kids after the dx for several years. And I am glad now that I kept my intolerance to myself then. I think I know where Becky comes from, but today I don't think it's selfish anymore to have more kids. Adoption can be an alternative and I admire those who feel strong enough to go that way. We did not and chose to have a sibling for Fiona. Time will tell whether we made the right decision. Becky made all of us feel quite uncomfortable and I really hope she comes back and clarifies her outburst. I for one have two questions: >>no one would ever choose to have a Cystic as opposed to a healthy child.<< It's beyond me that this statement comes from a STEPMOM, who obviously had the choice to have a child with CF or not. >>when you are born with it you will more than likely die from it.<< Hmm, life is a death sentence in itself. So shall we stop to give birth to children, because they all will more than likely die? Peace Torsten, dad of Fiona 6wcf e-mail: torstenkrafft@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2003 Report Share Posted March 1, 2003 I am new to this list and have not written in before. Our daughter is 3 mo. old and has CF. We found out I was a carrier when I was 2 mo.pregnant. Then my husband was tested, we were shocked when it came back that he was also a carrier. We have a son who is 2 and we never went through any of the testing then. He has always been fairly healthy and we were 99% sure he did not have CF. Anyway, we decided to get the amnio. When we found out the results we were devastated. It made for a very long, emotional pregnancy. I do have to say that I would do it again if we were to get pregnant again. It gave us time to grieve and to prepare ourselves for this new challenge. For us, it was the right decision. We met everyone at the clinic, we had enzymes to give her as soon as she latched on, we were able to study up on CF etc... On the day she was born, I feel like we were able to focus on our new little girl and give her the best start possible. There are so many things to celebrate and stress over with a new baby...why add one more. Good luck with your decision. I'm sure you'll make the right one for your family. Mom to Jack 2 wocf and Ellie 3mo. wcf Question > Hello all. I'm almost somewhat hesitant to bring up my question after > reading today's post but here goes anyway. I'm already a mom to 4, > our last child was born with CF who will be 5 next month. We > have recently just found out that we are expecting again. My question > is whether anyone out there has been in this situation and did you > have any testing during prenancy for CF or did you wait until after > they were born to have test done. Just curious. Thanks. > > , > Mom to 11wocf, Nikki 9wocf, Luke 6wocf and 4 wcf > > > > ------------------------------------------- > The opinions and information exchanged on this list should IN NO WAY > be construed as medical advice. > > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. > > ------------------------------------ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2003 Report Share Posted March 1, 2003 Hi , Deciding whether or not to test in utero is entirely a personal choice. There is no wrong answer. I know that if I were in your shoes I would wait until my baby was born to test. BUT, that is only because I have a history of miscarriage and CVS and amnio both carry a slightly increased chance of miscarriage. I would be just totally paranoid about having yet another miscarriage. If I wasn't prone to miscarriages, however, I would definitely test before birth. It's best to know as soon as possible so you can be prepared in the event your child is positive, and you can start treatments immediately. This can make all the difference in a cf child's health. Also, if the baby tests negative, it would be a big relief for you. Best of luck to you and congratulations! hugs, C Mommy to Mick and Alli, 3 yo twins wcf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2003 Report Share Posted March 2, 2003 , As far as how my kids were born I have not been in the same situation as you. We had Wyatt, our first, and w/ a meconium illeus surgery at 3days old found out about CF. His first 2 years were rough with Steve being deployed a lot and Wy's failure to thrive. So we waited till he was doing good w/ his health and till STeve was ready to go on three years of shore duty before getting pregnant w/ Hunter. I had an amnio w/ Hunter. I had NO problems w/ it what so ever. I just went home and slept all day and hubby took off of work to care for Wyatt so I didn't have to move. ( I was worried about the cramping but had none) Next day I was back to normal. Hunter has no cf, not even a carrier. I didn't find out bc I would have an abortion. That's not an option for me personally. I just wanted to know so we could immmediately take care of him if he needed anything! Christy Mom of Wyatt 7wcf and Hunter 3wocf -- In cfparents , " greyhoundgrin <jim3@a...> " <jim3@a...> wrote: > Hello all. I'm almost somewhat hesitant to bring up my question after > reading today's post but here goes anyway. I'm already a mom to 4, > our last child was born with CF who will be 5 next month. We > have recently just found out that we are expecting again. My question > is whether anyone out there has been in this situation and did you > have any testing during prenancy for CF or did you wait until after > they were born to have test done. Just curious. Thanks. > > , > Mom to 11wocf, Nikki 9wocf, Luke 6wocf and 4 wcf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2003 Report Share Posted March 2, 2003 Hi , It's me, Hopf from The Little Acorn....I just saw your email and wanted to say Hi!!! Off to continue CF Chat group..NITE Hope you love the journals!! Question > Hello all. I'm almost somewhat hesitant to bring up my question after > reading today's post but here goes anyway. I'm already a mom to 4, > our last child was born with CF who will be 5 next month. We > have recently just found out that we are expecting again. My question > is whether anyone out there has been in this situation and did you > have any testing during prenancy for CF or did you wait until after > they were born to have test done. Just curious. Thanks. > > , > Mom to 11wocf, Nikki 9wocf, Luke 6wocf and 4 wcf > > > > ------------------------------------------- > The opinions and information exchanged on this list should IN NO WAY > be construed as medical advice. > > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. > > ------------------------------------ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2003 Report Share Posted April 22, 2003 <<i get a really gassy heavy feeling almost crampy type feeling and i get bloaty, i dont think i gulp when i drink, the feeling is right around my waist anyone have a clue to this...Am i drinking my water wrong :-) >> Bearing in mind that I am a DS patient, with a larger stomach than an RNY, I get exactly that feeling if I drink too much, too fast. My goal is to drink a 32 oz. bottle between 8 - 12, and another between 1 - 4. Sometimes I'm running late and will drink a good 8 oz. at a clip and feel dreadful for a few minutes. Hmmmm - big dilemna: drink my water (I'm down for the day), or eat the jelly beans.... Kate Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2003 Report Share Posted April 22, 2003 <<i get a really gassy heavy feeling almost crampy type feeling and i get bloaty, i dont think i gulp when i drink, the feeling is right around my waist anyone have a clue to this...Am i drinking my water wrong :-) >> Bearing in mind that I am a DS patient, with a larger stomach than an RNY, I get exactly that feeling if I drink too much, too fast. My goal is to drink a 32 oz. bottle between 8 - 12, and another between 1 - 4. Sometimes I'm running late and will drink a good 8 oz. at a clip and feel dreadful for a few minutes. Hmmmm - big dilemna: drink my water (I'm down for the day), or eat the jelly beans.... Kate Quote Link to comment Share on other sites More sharing options...
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