AbsintheSorrow
New member
Get sweat tests done at a CF center. A lot of people who think they know what they're doing... are imbeciles.
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Doea any of this sound familiar?
- Thread starter anonymous
- Start date
Hi there,Thanks for writing me and informing me more. I am very fortunate because my son has been going to a cf center and is being tested through them the specialist. It was his pulmonologist that wanted all the test. He was very swollen in his nose and after we left the hospital from having pneumonia he got a sinus infection. They have followed him very well. My son is 5 and yes I agree that the younger years are probably the basis as to how well he'll do. He had a severe necrotizing pneumonia that consolidated in his lung. They said that a normal child doesn't usually get so ill unless something is underlying so thats why they tested him. He scored 60 on his sweat and then 31 and now they did DNA still waiting on results. He has been sickly all his life with high 105 fevers when he catches colds and severe gagging and couching at times during sleeping. Tummy problems chronic diarrhea and bloated and gassiness. Sweats profusely when he sleeps. But he is of normal weight and height. He is on so many meds right now to keep him from getting ill again. Lets see prevacid, reglan, Flovent steroid inhaler, atrovent steroid nasal spray, singulair, zyrtec oral liquid,nebulizer as needed with zopenex, flonase nasal spray. Treating all his symptoms. I'm fortunate that they had him transferred to this cf childrens hospital from the other hospital that wasn't a cf clinic. The doctors are excellent. I am very glad you wrote me and you take care of yourself too. Amber
Hi Debbie,I'm so glad your daughter is doing so well. My sons sweat is also a 60. Then they tested him again two days later and he was a 31. Very odd how it changed. Thats why they are doing the DNA. Surgery is no fun so I'm really happy that its done and she is doing better. I did here about the ibuprofren it does help to keep the inflammation down also has she been put on a steroidal nasal spray? My son is on one and it has helped a lot. Amber
well, it sounds like some of us here are doing a little better. my prayers are with all you mothers. Amber, i definately feel for you..i've been on every med you listed there! if it was my baby, i'd be scrambling too. i'm so happy that you've found a good cf center. i know i emphasized it before, but it's the most important thing with cf.if you ever have any questions about symptoms or such.. just yell. -christian
<img src="i/expressions/face-icon-small-frown.gif" border="0"> Liza, I was glad to read your message. My name is carrie and my one year old son seems to have many symptoms of cf but his sweat test was normal? He has yellow, stinky poop and has done from birth. he did not have his first poop for 24 hours (or longer) He has had 3 very serious colds but no chest infection. He has chronic nasal grung that they have put him on antibiotics for 3 tims. He prolapsed the bowel at 5 months and he has horrible chronic constipation. He is more treated for that than anything. He currently weighs 26 lbs so you can see he is not starving but they suspect he is not getting any protein from his diet. he is anemic (although just slightly) and has a puffy belly. Do you think I should demand they re-do the sweat test???carrie in bc.
Carrie,forgive me for butting in here but I would insist on a genetic test. Skip the sweat test altogether (or at least make sure that it is being doen in a reputable CF center and not a local hospital). Ask for the AMBRY genetic test. They test for the most mutations. Some of the less common mutations are found to have normal or near normal sweat tests. Other than the low sweat test and not really hving chest infections, all the symptoms you named are HUGE red flags for CF. Many with CF have more SINUS problems than lung problems and many are pancreatic sufficient or partially pancreatic sufficient enopugh to gain weight, if the consume a lot of food. Does your child have a large appetite? He might be gaining only because her consumes more food than most kids his age............. You mentioned that he did not have his first poop for more than 24 hrs, was it harder than a newborn's poop should be? My daughter was slightly blocked with her meconium poop but managed to pass it on her own (we had no idea that she had CF) but it was very hard and she opened up a fissure in her rectum and actually bled a bit with the stool.Sorry for all the questions and for butting in..........Andrea
We've been part of a study for Children with CF who have light to moderate symptoms. It is an anti-inflammatory that seems to clear up polyps and helps keeps the lungs from getting inflammed when they catch a cold. They both take high doses. Currently 1000 MG in the a.m. and again in the p.m., FYI-these girls both weigh around 100 pounds. That sounds shockingly high I'm sure, but they are thoroughly tested to ensure their liver is able to clear that dosage. We watch them for stomach problems and so far they have been completely normal. As I said earlier, it's been 5 years or so since they started. This spring our youngest had her sinuses "cleaned out" at Children's Hospital and she had to be off Ibuprophen for 3 weeks prior to the study and 2 weeks after. She was getting a bit of a cough and once she went back on, it cleared up. She hasn't had a problem since. We'll see what the future brings.Deb
Hi Andrea, thanks so much for answering my posting so soon. I am just beside myself with fear. Yes my sons first poop 24 hours after birth was very hard, black stool...he screamed so badly. He has been constipated since birth, horribly so and has alot of blood, bright red fisher blood....doctors say it is normal with constipation and I should not consern myself with it!!! We give him lactulose, mineral oil, colase and senicot. He still never poops on his own or with anything but constipation. His poop is pasty yellow, mixed with blood. He does not eat much at all but drinks many bottles. Bottles are all he will take and I think he has a very strong milk appetite, about 7- 8 , 80z bottles in a day.Doctors think I need to deny the milk and see if he will eat solid food and I have done this for about 10 hours but I can't stand to do it any longer...he screams so badly...he will take water in stead but will not eat solid food.My doctor now says that CF babies are diarrea predomonant...???help.
Carrrie, I am no doctor but if your child has nothing but constipation type poops and bleeds with most of them, there HAS to be a problem. Most kids with CF do have very loose stools, but constipation is often a problem too. My daughter actually went back and forth between the 2 problems for a long time. If it is not CF there is definately SOME sort of Gastro problem going on. I would insist on a referral to a Peds Gastro doc. That kind of pooping is not normal. Especially if he is getting all those meds to make the stool soft!!!!!!!When you see the gastro doc, tell them of your suspicions, they can order fecal fat tests to see if the fat is being absorbed and they can order sweat tests and genetic tests too! Andrea
Hi Carrie, I'm sorry for not responding quicker. I haven't had the chance to get on this computer all week. Drea has done a great job of answering your concerns about your son. I agree, if it isn't CF there is something gastrointestinal going on and you should try to see a peds gi doc. My daughters never really had any problems pooping. I also agree with the DNA testing. This type of testing wasn't available when my girls were little so I'm not too familiar with the names but I do know there is one that only tests for some mutations and one that tests for all. You want the one that tests for all. It is probably the one that Drea recommended. I know it is frustrating not knowing what is going on with your son but with everyone here you will certainly get lots of ideas on what might be going on. Someones bound to have a child that's gone through something similar. Everyone here is wonderful at helping out. Keep us posted on how he's doing. Liza