I am looking for a little advice or experience from others here because I have finally reached the point where I have no clue what is going on with my child. I thought I finally was about to get an answer in CF but the sweat test came back negative today and I have no other ideas on what to do. I'm sorry this is so long but I appreciate ANY replies. I'm so lost and over my head..
My son is 2, going to be 3 next month. For the past 2 years, we have had huge issues with his health. Last year he spent 6 months of the years on breathing treatments, asthma meds, antibiotics (for chest infections, ear infection after ear infection) he'd spike a 103+ fever daily for months. His ear infections never went away with the antibiotics. The breathing treatments were every 4 hours. He had to have been on 8 different meds for months. Finally it cleared up and the breathing treatments and meds stopped but he still always has a runny nose, always coughs. When he gets a chest infection, I have to stay up with him all night because he will choke and not be able to clear his airway several times a night. His breathing treatments are starting up again this year. Its just starting to warm up and I'm already having to do breathing treatments several times a day so he is comfortable. He'll cough until he pukes up mucus almost daily.
His breathing problems are usually pretty mild compared to his digestive issues. He has had a bloated stomach and low body fat for about 2 years. He's been failure to thrive and looks like one of those starving African kids on television all the time but he actually eats more food than most kids his age. He cries about his stomach hurting daily. He's had tons of ultrasounds and they just say its all gas. He's also had scopes that show nothing is wrong. He has diahrea all the time and I don't remember him ever having a diaper that wasn't horrible smelling and liquid. The doctors say its because his bms are extremely fatty. His gi specialist insists it is food allergies. I've done elimination diets and none of the meds they've suggested have helped with his digestive issues.
A couple days ago I rushed him to the ER AGAIN... because I went to change his diaper and it was full of blood. The ER doctor looked at his history and said that she believed it was CF. I've looked up everything on it and I honestly thought I had the answer. Not the one I wanted.. I wanted a healthy child. But an answer with treatment is better than no answer. I am still waiting on the pancreatic function test to come back from that trip to the hospital.
He had his sweat test today. They did it once on each arm twice because the first test he didn't sweat at all. The second time he sweat on one arm enough for the test. So out of 4 tests, he was able to get the test run once... and it came back normal. I'm at a complete lose. I honestly feel like I'm smacking my head into a brick wall. I've been fighting for 2 years now, telling everyone that something is wrong with my son and no one will come up with the answer. I'm not sure what to do anymore.
Every test comes back normal or just off enough to raise an eyebrow, but not enough to POINT towards SOMETHING. His hemagolbin (spelling?) test came back lower than normal but not TOO low. His white blood cell count comes up high but not TOO high. He has had one test come up with swelling in the colon.. but no CAUSE to it.
Has anyone had sweat tests come back negative even though the symptoms match on an acute, non life threatening way? Like could he has CF in a way that it affects him but wont trigger the sweat test? Has anyone here heard of any other disorders or illnesses that match the CF symptoms?
My son is 2, going to be 3 next month. For the past 2 years, we have had huge issues with his health. Last year he spent 6 months of the years on breathing treatments, asthma meds, antibiotics (for chest infections, ear infection after ear infection) he'd spike a 103+ fever daily for months. His ear infections never went away with the antibiotics. The breathing treatments were every 4 hours. He had to have been on 8 different meds for months. Finally it cleared up and the breathing treatments and meds stopped but he still always has a runny nose, always coughs. When he gets a chest infection, I have to stay up with him all night because he will choke and not be able to clear his airway several times a night. His breathing treatments are starting up again this year. Its just starting to warm up and I'm already having to do breathing treatments several times a day so he is comfortable. He'll cough until he pukes up mucus almost daily.
His breathing problems are usually pretty mild compared to his digestive issues. He has had a bloated stomach and low body fat for about 2 years. He's been failure to thrive and looks like one of those starving African kids on television all the time but he actually eats more food than most kids his age. He cries about his stomach hurting daily. He's had tons of ultrasounds and they just say its all gas. He's also had scopes that show nothing is wrong. He has diahrea all the time and I don't remember him ever having a diaper that wasn't horrible smelling and liquid. The doctors say its because his bms are extremely fatty. His gi specialist insists it is food allergies. I've done elimination diets and none of the meds they've suggested have helped with his digestive issues.
A couple days ago I rushed him to the ER AGAIN... because I went to change his diaper and it was full of blood. The ER doctor looked at his history and said that she believed it was CF. I've looked up everything on it and I honestly thought I had the answer. Not the one I wanted.. I wanted a healthy child. But an answer with treatment is better than no answer. I am still waiting on the pancreatic function test to come back from that trip to the hospital.
He had his sweat test today. They did it once on each arm twice because the first test he didn't sweat at all. The second time he sweat on one arm enough for the test. So out of 4 tests, he was able to get the test run once... and it came back normal. I'm at a complete lose. I honestly feel like I'm smacking my head into a brick wall. I've been fighting for 2 years now, telling everyone that something is wrong with my son and no one will come up with the answer. I'm not sure what to do anymore.
Every test comes back normal or just off enough to raise an eyebrow, but not enough to POINT towards SOMETHING. His hemagolbin (spelling?) test came back lower than normal but not TOO low. His white blood cell count comes up high but not TOO high. He has had one test come up with swelling in the colon.. but no CAUSE to it.
Has anyone had sweat tests come back negative even though the symptoms match on an acute, non life threatening way? Like could he has CF in a way that it affects him but wont trigger the sweat test? Has anyone here heard of any other disorders or illnesses that match the CF symptoms?