Let me start from the beginning.Last December my daughter was diagnosed with malabsorpation. She was 10lbs at 7 months old. We seen a gastric specialist. Changed diet etc. She gained weight and doctors were happy. When she turned a year old in may we discovered she is lactose intolerant. It progressively got worse until 3 months ago. The middle of October my daughter formed a nasty cough and runny nose. Doctors told me it was viral.for a month my daughter would cough so bad at night it would make her sick, keep her awake. She would scream in her sleep. (Not night terrors) finally I got fed up. My daughter was suffering. I was suffering. There was no sleep. My precious daughter turned into a mean little girl ? on black Friday her Dr diagnosed her with asthma (her daddy's side has it bad and she was a premier) so the Dr gave us a nebulizer with pulmicort(sp??) And albuterol for emergencies. 2 weeks in she was the same. Coughing bad, snotty nose but sleeping was better. Dr refered us to a pediatric pulmonary. He did an auto immune (Aa) blood work. And ordered a cf sweat test. Started her on singular and upped the nebulizer to twice a day. We did the sweat test. I got the phone call her levels were elevated. Now we are scheduled to do another sweat test at a cystic fibrosis center. The center says this test is more in depth. Her pulmonary dr said that he doesn't think the new test is needed as he believes her results were not elevated enough. The CF center told me she has cf. So confused. Is there a chance her levels are elevated but she doesn't have CF? If that's possible what would cause her levels to be elevated. According to the stuff I've been reading she has it. Because of the elevated levels they want to take her adnoids out.
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new need opinions
- Thread starter jabug8
- Start date
I'm so sorry you're in this place of limbo and that your little girl is having such a hard time! It is defintely possible to have lower or even "normal" sweat test numbers and still have CF. With over 1800 gene mutations causing CF it can present very differently from person to person and doesn't always have classic symptoms. There are many people on this forum who were diagnosed later in life or have children that was because they had low to normal sweat test results or didn't have classic symptoms. It does sound like your daughter has symptoms that could indicate CF so it's very good that you're going to an accredited CF center to have the sweat test repeated as well as other testing. I would ask to persue genetic testing as well. This can confirm the presence of two mutations even if the sweat test numbers aren't elevated. While regular pediatric doctors are excellent they aren't always the most familiar with CF and can write it off as a possibility if it doesn't look textbook. The CF clinic is much more familiar with the multitude of ways CF can manifest itself and help you find out if your daughter dies indeed have CF.
Hang in there and keep fighting for answers! You're doing a great job.
Hang in there and keep fighting for answers! You're doing a great job.
Thank you. It has been a major roller coaster. The information i was given was
For people older than 6 months of age, a chloride level of:
Equal to or less than 39 mmol/L = CF is very unlikely
40 - 59 mmol/L = intermediate means that CF is possible
Greater than or equal to 60 mmol/L = CF is likely to be diagnosed
My daughters levels was at a 67 mmol/L. Her pulmonary dr keeps telling me to stop worrying that its not high enough to diagnose her! But the CF center rushed her for a different n more in depth sweat test to start treatment. That's what had me confused...I keep reading so much on CF but nothing is really answering my questions and to get into the center will be another 2. Weeks ? thanks for your reply. Really helped a lot in easing a racing mind
For people older than 6 months of age, a chloride level of:
Equal to or less than 39 mmol/L = CF is very unlikely
40 - 59 mmol/L = intermediate means that CF is possible
Greater than or equal to 60 mmol/L = CF is likely to be diagnosed
My daughters levels was at a 67 mmol/L. Her pulmonary dr keeps telling me to stop worrying that its not high enough to diagnose her! But the CF center rushed her for a different n more in depth sweat test to start treatment. That's what had me confused...I keep reading so much on CF but nothing is really answering my questions and to get into the center will be another 2. Weeks ? thanks for your reply. Really helped a lot in easing a racing mind
Aboveallislove
Super Moderator
Oh, mom. You must be so worried, but if it is CF you're daughter will start doing so much better with proper treatments. This might explain the difference: The "local" sweat test isn't as accurate as one done by a CF Center, so the CF Center see a definite concern and it is good they are taking seriously. The local doctor might not know enough or the local test my have different "cut off levels." One thing to consider: Get a copy of the newborn screen results in detail.
Aboveallislove
Super Moderator
Sorry I got called away and couldn't finish my thought. The newborn screen checks for high IRT level and some states test twice and others test once and then run a genetic test. If your baby was born in Maryland, it looks like they only test for a high IRT level and if high need a repeat at the doctor's office. I'd want to see the actual results for that to see if it was close to high? It doesn't look like Maryland looks at any gene mutations. If born in another state, the cff.org webpage has a map that shows what they test for. I do not know those with CF always have elevated IRT levels or not; but knowing what the newborn screen said might be helpful while you wait the 2 weeks.
Aboveallislove
Super Moderator
Just making sure: You do mean IRT levels and not sweat test levels, re having lower levels and then later in life CF diagnosis? You might want to check with your peds office where the newborn records would go or call the state newborn office. I think I saw that elevated IRT levels might be elevated for premies so maybe it was and they thought it was "normal" for a premie? Hang in there mom.
Aboveallislove
Super Moderator
The IRT level is from the blood and it is elevated in folks with CF. That's what Maryland does for its newborn screen test. What I am not sure of is, could it not be elevated for someone with CF? I know that sweat tests might not be elevated. But wasn't sure about IRT if it is possible to not be elevated for someone with CF (you said you read it could be later, that's why I asked if you really meant IRT). If you call the peds office or the newborn screen office they should be able to tell you the IRT level your little one had on the newborn screen and what percentage it was (i.e. top 5%)
Aboveallislove
Super Moderator
I know how overwhelming all this is. Hopefully this info will help you over the next two weeks until the appointment. Once you're to the CF Center, the main issue will be the sweat test. They know how to run it properly and once you know the results from that, you'll be able to move forward. At that point, the IRT and earlier (non CF Center sweat tests) really don't matter. I'll find the earlier thread on what to expect during sweat test and first appointment. Did they tell you that you would get results immediately and whether you would then have an appointment with the CF doctor or is it just the sweat test?
No didn't say anything. Just it's different then her. First test. Which scares me because I've never known my daughter to sweat and this sweat test I have to dress her in heavy clothes they will put a type of cloth all over body in different areasto collect the sweat. That's all the lab told me. But this is just the sweat test and then the CF center will call me to set up an appointment. there was something I was readying about CRMS. I'm trying to stay off Google I'm just over whelming myself. Just hard watching my daughter go threw this and I can't help ? nights are so restless she gags n coughs so much and idk how to get a 20 month old to spit it out to help. Very frustrating and with the very little support at home its getting stressful. Her pediatrician is going to get tired of me calling soon lol
First of all I am sorry you are going through this. However, keep in mind if your daughter does have CF the sooner she is diagnosed and treated at a CF center, the better. It is scary so I agree googling information about CF will just drive yourself crazy. Information can be outdated and plain wrong. The Cystic Fibrosis Foundation website has information that is up to date and credible. I will post a link for you about what to expect for a sweat test.http://www.cff.org/aboutcf/testing/sweattest/
My daughter is 12 years old with CF. I do have a son who does not have CF. If it makes you feel any better when my son was 4 he did have a sweat test and the test itself, really is no big deal. It is all the worry and implications that are the big deal.
When is the sweat test scheduled?
My daughter is 12 years old with CF. I do have a son who does not have CF. If it makes you feel any better when my son was 4 he did have a sweat test and the test itself, really is no big deal. It is all the worry and implications that are the big deal.
When is the sweat test scheduled?
CF mom of 2
New member
I can remember similar circumstances (although no preemie) in the early days of my son's life. He struggled, coughed and vomited. I was on the phone constantly with nursing mothers, docs etc. His pediatrician ordered a sweat test from the local hospital but results came back negative. While traveling, his sister (9 mos) had been sick and became dehydrated so she was hospitalized. In trying to find out what caused her dehydration the hospital did a sweat test and it was positive. My son who was 16 mos older was with us at the hospital visit and the doc recommended he be tested as well... also positive. While the diagnosis was shocking and hard to take, the treatments for CF helped immensely. Be encouraged that if your daughter's test is positive, treatment has come so far and research is on the verge of great things. I'll be thinking of you.
Aboveallislove
Super Moderator
Oh, CF mom of 2, my heart aches thinking how hard that must have been. The diagnosis is so hard no matter what, but just imagining traveling, heading to a strange hospital with a sick child, only to be told it is not just a "sick child" and not just your baby but your older son as well. But as you say, with the proper treatment it is so much better AND the research is so promising that we'll have something for all CFers so very soon.
Tnjackson2
New member
Just reading through these posts now jabug8, saw that y'all went for the sweat test yesterday, and wondering how it went. I'm praying for y'all, and whatever the outcome was, you have some more answers hopefully. Keep hangin in. <3
Thank you. I posted a thread earlier today under here. Explaining everything. She had 2 more test done yesterday and both came back positive.the CF center that did the tests wants me to talk to pulmonary to see where we go from here. Her pulmonary Dr is being very arrogrant and will not sign the medical referral to go to CF center. Getting very frustrating. Thank you ? I'm trying my best to keep it together