Guest guest Posted January 29, 2002 Report Share Posted January 29, 2002 , The big give away for my youngest was the salty skin when I kissed her. She didn't have the amazingly smelly nappies until after she was diagnosed. The waiting is just about the hardest thing in the world to do - no parent I know is good at waiting around for doctors to tell us what is/isn't wrong with our children. Don't go too crazy, hang in there, we are all here with you. Mum to Cate 9yrs wocf and Sian 5yrs wcf Canberra Australia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2002 Report Share Posted January 29, 2002 Most babies don't taste like salt. Wait a couple of hours after your baby's bath and lick your lips, then kiss baby's forehead. If you taste salt, then that's salty. You might want to have someone else try this for you, though, because you might be tasting it because you *think* it will taste that way. Have an aunt or someone kiss baby's forehead (someone who doesn't know anything about cf.) Then say, " Does her skin taste salty to you? " That would probably be a better indication than you doing it. If you really want to be paranoid about it, put warm socks on the kid after bathtime and wait two or three hours, then pull off a sock and lick the bottom of a foot! My kid's feet are saltier than a can of Pringles! Also, I should mention, that the sweat test (and the forehead kiss test) aren't 100% accurate. Some people have cf and don't have salty sweat. If you do have the sweat test done and it comes back negative, but your child continues to display cf-like symptoms (and especially if more cf symptoms arise), insist on a genetic test for cf mutations. There is a new, more accurate genetic test available that will find most cf mutations (it's called the Ambry test.) Another note: doctors are trained to look for horses, not zebras. If your child has a rare disease, it will take longer to diagnose than something more common (in most instances.) Doctors test for the most common ailments first and narrow down the field as to what might be wrong. The sweat test is often ordered by doctors when ruling out cf, most are just being careful to check every possible cause of symptoms. Your baby may just have an oral aversion and need a little therapy to learn to like the feeling of food going into her mouth. If your child does have cf, then it's still not the end of the world, there are lots of treatments that help kids with cf grow up and thrive. Good luck, ~ mommy to 3, 1 with cf > How salty is salty? Doesn't everyone's skin taste a little like salt? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2002 Report Share Posted January 30, 2002 Jacquline - My daughter was 6 months old when she was finally diagnosed. She was also doing fine for the first couple of months, except for the MANY smelly bowel movements. Her doctor first thought that I was eating something she might have been allergic to (I too was nursing) so we switched over to formula. Nothing changed and she started to slow down in weight gain and eventually lost her appitite almost completely. She was first admitted into the hospital as " Failure to Thrive " , a term I think they use when they just don't know what the problem is. Anyway....it was explained to me later that when food is not being absorbed normally the body reacts as though it is being starved. The appitite will start to slow down and eventually stop completely. A person going through this will also become less active and less alert. With some CF kids the first symptom they will display is a failure to absorb food properly because the pancreas is not able to do it's job in the digestive process, this is also the reason for the foul smelling bowel movements. My daughter never did (nor does she today at 20 years old) have the salty taste to her skin. She didn't develope lung problems or infections until she was about 7 years old. The symptoms very in degree with each CFer as well as what symptoms are seen. My daughter was tested for almost every " might be " before she was tested for CF. It's not really a bad thing to do, but if you're really concerned about it being CF talk to your doctor and find out why he/she is not testing for CF now. I've found over the years that the more you talk with your doctor the better the care they are able to give and the better you feel about the care you get. If your doctor isn't answering your questions or taking time to address your concerns, that should be a red flag and you might want to consider finding a different doctor. Because if it is CF you want and need a doctor that will be able to work with you. Hang in there!!!! , Mom to 20wcf & Beth 18 wocf > Hi, I found your site while I was searching for information on cf. I > was hoping that maybe some of you could help me out. Here is my > situation: I have a seven month old daughter. She wa doing > beautifully, gaining weight and growing just like she should. untill > three months ago. She has only gained 8 oz in the last three months. > She has no appetite at all she only nurses. She does nurse alot. The > doctor said that it could be that she just needs more than the milk > gives her. She ran some preliminary blood tests and they came back > fine. She wants to send us to an occupational therapist to " teach " > her how to eat. If she does not gain weight she wants to test for > cf. here's my problem, obviously I'm going crazy. She springs this > on me and then tells me to just wait and see. I have checked all the > websites for information but it's all so clinical and really does > not help me much. I was hoping you could give me a little more > usable information. mainly about symptons ect. I am sorry for this > being so long. and thank you in advance for your help. > Jacquline Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2002 Report Share Posted February 2, 2002 Maureen once commented that she tasted like a Mcs french fry. This was 2 years before she was dx. Meg Mom of 3 cf & Crohn's, 6.5ywocf & 1yowcf & GERD Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2002 Report Share Posted March 12, 2002 Hi . Im glad you are here. Im pretty new to the club, and like tyou , Im one of the still up late ones. Mine is most times worse at night. So I dont go to bed very early. You will like it here.Everyone is so nice and supportive. Im sorry you feel so bad and are scared. You will learn a lot here that is helpfull. And the best part, there is always someone here for you. blessings. sheila Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2002 Report Share Posted March 12, 2002 Hi sheila It appears you are up late again. I hate when I cant sleep with pain. Now I take sleeping tablets taht helps and If pain is bad I take fast acting morphine I resist for awhile then I just do it better not to be miserable Cheers Debs- -- In pancreatitis@y..., " blackbird1721 " wrote: > Hi . Im glad you are here. Im pretty new to the club, and like > tyou , Im one of the still up late ones. Mine is most times worse at > night. So I dont go to bed very early. You will like it here.Everyone > is so nice and supportive. Im sorry you feel so bad and are scared. > You will learn a lot here that is helpfull. And the best part, there > is always someone here for you. blessings. sheila Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2002 Report Share Posted March 13, 2002 , I am sorry that you have been diagnosed with pancreatitis. I had a few thoughts. You said that your mother has pancreatitis. Is hers due to her diabetes or perhaps you need to be checked (bllod test ) for genetic, hereditary pancreatitis. there are others on this board that have the heridetary type and they are much more knowledable about it than I. perhaps others will gove you some insight on it. Try to get some rest, drink clear liquids, stay on a LOW FAT diet whenever you are able to eat again and pace yourself. try to keep the pain level tolerable and get to a GOOD GI doctor !!!!!!!! Hope this helps, Wishing you the best, Lily Hello > Hello, My name is . I was diagnosed with pancreatitis two days ago. I > went to the ER for what I thought was back pain or possible strain on my side > and back. I started hurting a few months ago on my left side. This past > week it got worse. I have been putting it off because I have two small > children and a husband to take care of. But, it got to the point on Monday > that I had to go to the ER. Well, when I got there, they ran tests and said > my pancreas was swollen. That scared me. Still does. I didn't know what > they meant by that at all. Well, they finally got my blood tests back Monday > night and said that I needed to be admitted because my lipase levels were > high. So, I was admitted and they gave me morphine and phenergan for the > pain and nausia. Mind you I am still queazy but, hated the morphine. So, > they put me on vicadin and let me go home yesterday afernoon. The pain is > still there of course but, I am taking my vicadins. I belong to other groups > at yahoo and figured that there may be a support group for this new illness I > know I must deal with to survive the pain. (My word is this pain awful!) It > is in my back and my left side and won't stop sometimes. I can't sleep, > thus, the late email to everyone. But, I am sooo glad that I found you. I > am new to this illness. Oh! I forgot to give you my age. I am 23. I have > two small children and a loving husband. I appreciate being a part of this > group and if this pain persists I may seek help from another doctor and > hospital. I knew something was wrong. My mother is also diabetic and she > has suffered from Pancreatitis but, I never thought I would have it! At > first I thought I had cancer when they said my pancreas was swollen. Can you > get cancer from this? Well, I hope I can get my answers here. I am sure I > will. Thankyou. Sincrerely, > > > PANCREATITIS Association, Intl. > Online e-mail group > > To reply to this message hit " reply " or send an e-mail to: Pancreatitis (AT) Yahoo > > To subscribe to this e-mail group, simply send an e-mail to: Pancreatitis-subscribe (AT) Yahoo > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2003 Report Share Posted August 19, 2003 Oh no, The devil would just love to fill your head with lies if you let him. Tell him to flee in a voice of authority!!! I too have felt like this a few times. Just spend a few nights a week on your knees praying and don't look at the clock! I say this because I have seen, heard and felt his presence. It is awesome and I would always seek him no matter what!!! Just keep your eyes on him!! Love you sis, Hello Hi Ladies. My car hasn't sold yet and I am getting a little frustrated. So I guess i am going to keep the car and think of another way to come up with the money for this tr. I am really feeling like God is so far from me. I don't feel his presence anymore like I used to and I am trying to pray and seek God for an answer. Someone please help before I give up completely. Kia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2003 Report Share Posted August 19, 2003 Kia: You just remember that God is never early, but He is always right on time. Just keep seeking him and don't give up. You must be patient and also persistent. When you have done all to stand - keep standing!! Remember, God is in control. Just wait on His timing - He won't let you down!!!! -- > Hi Ladies. > My car hasn't sold yet and I am getting a little frustrated. So I guess i am > going to keep the car and think of another way to come up with the money for > this tr. I am really feeling like God is so far from me. I don't feel his > presence anymore like I used to and I am trying to pray and seek God for an > answer. Someone please help before I give up completely. Kia > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2003 Report Share Posted August 28, 2003 Where is everybody? Must be Yahoo slow or something.. Nel Quote Link to comment Share on other sites More sharing options...
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