susancollins Posted December 16, 2012 Share Posted December 16, 2012 My son was born at a free standing birth center and he never recieved the newborn screening for cystic fibrosis. He was pretty healthy child while I was breastfeeding but he did get several colds last year. I have taken him to the doctor for a cold and they say their is nothing they can do he is to young for cough syrup. He has been put on albuetrol for weezing. He constantly sweats especially at night and his clothes will be really damp like they were taken out of the dryer to soon. My husband suggest that we just let him sleep in a diaper but it is to cold. He has the worst pea green thick thick diahera it has the worst smell. He was born at 9.7 ounces and by at 18 months he is only around 22 pounds. He will sleep all day if we let him once he is layed down for a nap from 2-7. He will sleep till 10 everyday if I let him. I sometimes let him and check on him because it is easier to do school with the other kids. He has been so sick since he was a year old that he hasn't even had his 12 months shots because he is always sick. I have only taken him to the doctor twice because they alwasy say he has a cold just let it run its course. He coughs so much he acutally chokes on mucus and will cough mucus up. I have three other children he is my four this is not normally. Should I take him to his ped or to the childrens hospital? We have been keeping him home. My husband has stayed home from church the last three weeks to stay with him on Sunday and Wednesday thinking he would get better but he has not. What should I do? Quote Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted December 16, 2012 Share Posted December 16, 2012 In my opinion, you need to type this out and pursue this. Don't let them focus just on this one "cold". Ask them to focus on the patterns of illness. I'm not sure where you should take him. Quote Link to comment Share on other sites More sharing options...
Harriet Vane Posted December 16, 2012 Share Posted December 16, 2012 In my opinion, you need to type this out and pursue this. Don't let them focus just on this one "cold". Ask them to focus on the patterns of illness. I'm not sure where you should take him. :iagree: Quote Link to comment Share on other sites More sharing options...
susancollins Posted December 16, 2012 Author Share Posted December 16, 2012 Thank you both, I just wish I knew what avenue to take on taking him somewhere. My other children are so healthy. Grayson is constantly sick and he is just not getting better he will have a couple of days where he is coughing as much but he still has the other symptoms. I don't like taking him to the doctor because I am scared he is going to get something worse. The two time I have taken him they said cold and one time they gave us a neublizer to borrow with steriod albuterol. Quote Link to comment Share on other sites More sharing options...
Pod's mum Posted December 16, 2012 Share Posted December 16, 2012 Susan please, please get this checked ASAP. My eldest had Cystic Fibrosis. The tests are fairly easy and not too invasive. They will do a quick blood test, which will take a week or so to return and should do a sweat test too, because yes, they are salty. Please insist on the sweat test, it's non-invasive, but needed as not all CF genes have yet been mapped, so not all show up on the DNA blood test. In Australia all large hospitals, particularly Children's Hospitals have a Cystic Fibrosis clinic. Usually run by Pulmonary Specialists. On a positive note, your little lad would probably not have lasted this long without treatment, if he had the most common gene type. I do not mean this to be flippant. If he does have the common genes for it, then you are managing very well. Treatment options get better each year, as does expected longevity. If it is CF and they start him on enzyme replacement, he will rapidly start to gain weight and your eyes and nose won't melt each time you change his nappy. If the tests can cancel the chance of CF, Dr's can look elsewhere for what is going on. Quote Link to comment Share on other sites More sharing options...
susancollins Posted December 16, 2012 Author Share Posted December 16, 2012 Did your child have the really greasy thick mucous stools? He hardly eats anything green and his stools are always green. He will also have coughing fits and want eat much. Should I take him back to the ped or to the childrens hospital to the ER and explain his symptoms. Quote Link to comment Share on other sites More sharing options...
Pod's mum Posted December 16, 2012 Share Posted December 16, 2012 By the way, when you go to a waiting room, you can insist on waiting away from others, we did this all the time in the casualty dept of the Children's Hospital. They didn't like it but got to know us. Move a seat or wait in the hall. It does matter. Quote Link to comment Share on other sites More sharing options...
Pod's mum Posted December 16, 2012 Share Posted December 16, 2012 "Did your child have the really greasy thick mucous stools? He hardly eats anything green and his stools are always green. He will also have coughing fits and want eat much." Yes and cough till she thew up, and that was full of mucus too. It all sounds heartbreakingly familiar. I would just get in the car and turn up at a large hospital if your local options are not good. If so pack for an expected stay. If this is CF, your lad needs a diagnosis fast. ETA If you want to PM me I'll give you my email address. Quote Link to comment Share on other sites More sharing options...
susancollins Posted December 16, 2012 Author Share Posted December 16, 2012 Should I take him back to the ped or the childrens hospital. Can the peds do the sweat and blood test? He is having coughing fits right now and it just breaks my heart. Quote Link to comment Share on other sites More sharing options...
Lolly Posted December 16, 2012 Share Posted December 16, 2012 Did your child have the really greasy thick mucous stools? He hardly eats anything green and his stools are always green. He will also have coughing fits and want eat much. Should I take him back to the ped or to the childrens hospital to the ER and explain his symptoms. I would go to the pediatrician first. I would outline all of his symptoms emphasizing that this is not a short term thing. If the pediatrician did not listen, I would fire them and find a new one. Never mind. Coughing now...head to ER. Quote Link to comment Share on other sites More sharing options...
susancollins Posted December 16, 2012 Author Share Posted December 16, 2012 Ok, I just talk to one of my friends who is a nurse at the local hospital. She told me to go to the ped on Monday if he remains the same and if they want run the test take him to Duke or UNC, and that is what I am going to do. I will keep you all update. Please pray for my sweet Grayson. Quote Link to comment Share on other sites More sharing options...
Pod's mum Posted December 16, 2012 Share Posted December 16, 2012 I would pack for a few days, just in case, be very blunt and say you NEED a private waiting area as you believe your son may have Cysitic Fibrosis and require reverse Isolation and insist on it. If you have a Children's Hospital, phone ahead and say you are on your way so they can page the relevant Registra.They won't page til you get there but should be more prepared for your BOMBASTIC attitude. (Which will be wonderful Susan). Don't be put off by them, go anyway if then try to put you off. Take a good book for you and something to keep him amused. Take a pram to keep him locked in so he doesn't play in the waiting room. Lots of waiting ahead. Quote Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted December 16, 2012 Share Posted December 16, 2012 Praying for Grayson Quote Link to comment Share on other sites More sharing options...
Pod's mum Posted December 16, 2012 Share Posted December 16, 2012 It's Sunday here, if it's still Saturday there I wouldn't wait until Monday. His oxygen sats could be very low if he's been sick for a while. Of course here all of our health care is free. This may make a big difference with your choices. However, if it is CF and he is this sick and undiagnosed, I would not be waiting til Monday. ETA: If it is CF, they would want to be getting him on IV antibiotics PDQ. Quote Link to comment Share on other sites More sharing options...
susancollins Posted December 16, 2012 Author Share Posted December 16, 2012 Thank you all. I am praying he just has a cold that won't go away but I have never seen a child have a cold for months. He has a few days where he will have mild symptoms and 5 days where he is just miserable. My mom who lives with us says poor thing he never gets a break. He is always feeling bad. Quote Link to comment Share on other sites More sharing options...
susancollins Posted December 16, 2012 Author Share Posted December 16, 2012 I talk to my friend who is a nurse and she said the local hospital here wouldn't do anything unless he is critical they would tell me to go to his peds for testing and chest x-rays. Quote Link to comment Share on other sites More sharing options...
AimeeM Posted December 16, 2012 Share Posted December 16, 2012 Thank you both, I just wish I knew what avenue to take on taking him somewhere. My other children are so healthy. Grayson is constantly sick and he is just not getting better he will have a couple of days where he is coughing as much but he still has the other symptoms. I don't like taking him to the doctor because I am scared he is going to get something worse. The two time I have taken him they said cold and one time they gave us a neublizer to borrow with steriod albuterol. Is there a family history of it? When Nico was going through testing (he had a lung condition, but it wasn't cystic fibrosis) we were told that it only happens when the parents are carriers? Not entirely sure though. For what it's worth, the testing was very non-invasive. Go to your ped. He will refer you out (ours referred for a sweat test). Quote Link to comment Share on other sites More sharing options...
Pod's mum Posted December 16, 2012 Share Posted December 16, 2012 That's the trouble, really sick for CF, just looks like a bad/mild cold in another kid. Even WITH a diagnosis, sometimes we would go multiple times to ER attempting to get admitted, at her hospital, and be turned away. Then turn up, without an appointment, to the next week's clinic and be told she should have been admitted days ago. !!!?? Praying of course for your whole family. Quote Link to comment Share on other sites More sharing options...
wapiti Posted December 16, 2012 Share Posted December 16, 2012 I don't know anything about CF. In addition to checking out that possibility, I'd be thinking about the possibilities of asthma and/or pneumonia. If you can't get him looked at until Monday, I'd be watching for retractions, especially up around the collar bone area. Any struggling to breathe or grunting would send us to the Children's Hospital ER or urgent care if the ped isn't open. (FWIW, my 3 y.o. has pneumonia again, right now, and I didn't connect the green stools until I read this thread. At our ped visit the other day, she referred us to National Jewish; dd is following in her asthma brother's footsteps I guess.) Quote Link to comment Share on other sites More sharing options...
AimeeM Posted December 16, 2012 Share Posted December 16, 2012 Should I take him back to the ped or the childrens hospital. Can the peds do the sweat and blood test? He is having coughing fits right now and it just breaks my heart. Our sweat tests are done at the hospital, not the peds office. I just read further in the thread; take him in now. Praying. Quote Link to comment Share on other sites More sharing options...
Renee in NC Posted December 16, 2012 Share Posted December 16, 2012 Ok, I just talk to one of my friends who is a nurse at the local hospital. She told me to go to the ped on Monday if he remains the same and if they want run the test take him to Duke or UNC, and that is what I am going to do. I will keep you all update. Please pray for my sweet Grayson. UNC has a GREAT cystic fibrosis department. My now 11yo had his CF testing done there, and during his stays as a baby we were on that ward. (He doesn't have it, but he had the same digestive symptoms as CF.) I hope you get answers soon. I know how it feels to know SOMETHING is wrong, but not be able to figure out what. Quote Link to comment Share on other sites More sharing options...
mom31257 Posted December 16, 2012 Share Posted December 16, 2012 Praying for him and you all! I personally probably wouldn't wait until Monday. I'd go to a good ER and make sure there isn't something that can be done to help him now. Quote Link to comment Share on other sites More sharing options...
speedmom4 Posted December 16, 2012 Share Posted December 16, 2012 Praying for you. My ds had a sweat test done and it was completely non-invasive. Turned out my son was having GI issues and not CF. Please keep us updated! God Bless, Elise in NC Quote Link to comment Share on other sites More sharing options...
Pod's mum Posted December 16, 2012 Share Posted December 16, 2012 Susan I've PMed you. Quote Link to comment Share on other sites More sharing options...
teeniebeenie6 Posted December 16, 2012 Share Posted December 16, 2012 Praying for your little guy! If it turns out not to be CF I suggest looking into allergies. My son was having green stools and sometimes blood tinged stools, he was congested a lot and had a runny nose and he was getting sick quite a lot. It was really freaky. We ending up discovering with an elimination diet that he was allergic to milk, soy and egg. His green stool stopped very quickly after I cut the milk. He also has and was and is failure to thrive. We had him weighed at the specialist and he weighed 14.9lbs at 8 months. Hugs to you!! Quote Link to comment Share on other sites More sharing options...
sbgrace Posted December 16, 2012 Share Posted December 16, 2012 Can you go to a Children's hospital ER? That's what we were told to do when my son had serious issues (not CF; though among other tests they did a sweat test; he was eventually dx'd with a metabolic condition). Quote Link to comment Share on other sites More sharing options...
susancollins Posted December 16, 2012 Author Share Posted December 16, 2012 We are all going to stay home from church tomorrow and we are going to go in first thing monday morning to the peds and hopefully they can do the test their or refer us out to get the test done the sameday. If he gets worse we are going to go to UNC right away. I was told by to different nurses unless his oxgen stats are low and he is struggline to breathe they are going to tell me to go to the peds office. Thank you all for your prayers. I am hoping it is a cold, allergies, or something simple. Quote Link to comment Share on other sites More sharing options...
Harriet Vane Posted December 16, 2012 Share Posted December 16, 2012 Be prepared to be insistent, persistent, and forceful. Your concerns are valid, and you may need to repeat and insist and repeat and insist some more on the appropriate testing, promptly. :grouphug: Quote Link to comment Share on other sites More sharing options...
Izzy Posted December 16, 2012 Share Posted December 16, 2012 I have a friend that has 2 CF children and a couple of friends that had CF scares. This might sound weird but she always said to lick their skin to see if it tastes salty. CF kids will taste salty. (((Hugs))) and my thoughts and prayers are with you. I wish the ER would help more. :( Quote Link to comment Share on other sites More sharing options...
Chris in VA Posted December 16, 2012 Share Posted December 16, 2012 My brother has CF. He has been thru a lung transplant and is married with 2 adopted kids. He had his transplant nearly 12 years ago; it saved his life and allowed him to live one. He will be 56 in April. We have seen incredible progress in treatment, and they have made so many new discoveries. Not all CF is the same, but doctors have come a long way in understanding it. I sincerely hope your dear Grayson doesn't have it, but if he does, he'll need you to advocate for him and you will need someone to keep an eye on you, too. Many hugs, and many prayers for you and him. Quote Link to comment Share on other sites More sharing options...
Reya Posted December 16, 2012 Share Posted December 16, 2012 Whatever else happens, get a new ped. He doesn't need to suffer like that. Quote Link to comment Share on other sites More sharing options...
susancollins Posted December 16, 2012 Author Share Posted December 16, 2012 I am looking into a new ped now. We are going to the doctor first thing in the morning. Grayson is crawling up the steps as we speak, he has had a few coughing spells but seems to be breathing fine this morning. He has still had the same diarhea this morning. Thank you for all of your prayers. Quote Link to comment Share on other sites More sharing options...
unsinkable Posted December 16, 2012 Share Posted December 16, 2012 Good luck! You and your little guy will be in my thoughts! My youngest was constantly sick his 1st 2 years. It turned out he wasn't making antibodies to common causes of infections. They were just about to start IV IG therapy but they tested him again and BOOM! the antibodies were there. Quote Link to comment Share on other sites More sharing options...
Slartibartfast Posted December 16, 2012 Share Posted December 16, 2012 :grouphug: :grouphug: :grouphug: Ask your ped for a referral to a pediatric pulmonologist. If they hem and haw I would insist. There are many types of CF, there is a wide degree of severity. Quote Link to comment Share on other sites More sharing options...
Jennifer in MI Posted December 16, 2012 Share Posted December 16, 2012 Ok, I just talk to one of my friends who is a nurse at the local hospital. She told me to go to the ped on Monday if he remains the same and if they want run the test take him to Duke or UNC, and that is what I am going to do. I will keep you all update. Please pray for my sweet Grayson. ((hugs)) When I was pregnant with my fourth, it was included with the prenatal testing for ME. If I wasn't a carrier, then my kids could NOT have CF. And, we were at a birth center. Could you call the BC and see if they ran that test on you? It might ease your mind. I have a friend that has 2 CF children and a couple of friends that had CF scares. This might sound weird but she always said to lick their skin to see if it tastes salty. CF kids will taste salty. (((Hugs))) and my thoughts and prayers are with you. I wish the ER would help more. :( When my third had his CF scare, he DID taste salty. But, he didn't have CF. So, if you do lick your son, know that if he's salty, he still may be negative. We had him tested at the allergist/pulmonologist. With poor Grayson's ongoing symptoms, I'm really surprised that they haven't sent him to one. I'm so sorry. Quote Link to comment Share on other sites More sharing options...
Pod's mum Posted December 16, 2012 Share Posted December 16, 2012 ((hugs)) When I was pregnant with my fourth, it was included with the prenatal testing for ME. If I wasn't a carrier, then my kids could NOT have CF. And, we were at a birth center. Could you call the BC and see if they ran that test on you? It might ease your mind Again, they can only test for the most common genotypes for Cystic Fibrosis. So If the parent comes back clear, then it greatly reduces your chance of being a carrier (and of your off-spring inheriting the disease) but you may still have a more rare CF gene. Hence the need for the sweat test to make sure. Unfortunately CF testing has meant many doctors will not consider the possibility of CF as they falsly believe all cases get picked up with the screening proccess. And as other posters have said Susan, it could look like CF, but not be. Fingers crossed. Quote Link to comment Share on other sites More sharing options...
susancollins Posted December 16, 2012 Author Share Posted December 16, 2012 I finally wrote out all of Grayson information from birth till now to take to the doctor. I will update tomorrow when I know more. Please continue to pray for him. He is such a sweet little fellow. Quote Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted December 16, 2012 Share Posted December 16, 2012 I finally wrote out all of Grayson information from birth till now to take to the doctor. I will update tomorrow when I know more. Please continue to pray for him. He is such a sweet little fellow. Will do. :grouphug: :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
Ewe Mama Posted December 17, 2012 Share Posted December 17, 2012 Praying... Quote Link to comment Share on other sites More sharing options...
Running the race Posted December 17, 2012 Share Posted December 17, 2012 Praying you find an answer. As others said, the tests for CF are non-invasive. My brother has CF. He had a double lung transplant 14 years ago. He is now 43 years old. I wish he'd lived his life as if he would have a future. I don't think he had any idea he would have such a good prognosis. Quote Link to comment Share on other sites More sharing options...
jar7709 Posted December 17, 2012 Share Posted December 17, 2012 My sister has CF. She is 33 and has *knock wood* not yet needed any transplants, and leads a normal life. People don't know she has CF unless she tells them. Keep after the diagnosis, but please be reassured and try to know that CF can often be managed. It is a hard road but so many live long and productive lives with modern medicine. *hugs* Quote Link to comment Share on other sites More sharing options...
newlifemom Posted December 17, 2012 Share Posted December 17, 2012 Just saw this, Susan. Praying for relief for Grayson and answers for you. ((((())))) Quote Link to comment Share on other sites More sharing options...
Luckymama Posted December 17, 2012 Share Posted December 17, 2012 I will be thinking of you today :grouphug: Quote Link to comment Share on other sites More sharing options...
unsinkable Posted December 17, 2012 Share Posted December 17, 2012 I'm praying for all of you who are affected by CF. (((Hugs))) Quote Link to comment Share on other sites More sharing options...
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