Question:
I need your help! I am new to this site, as we have just recently discovered what CF is. I need to either be validated in my concerns for my daughter, or be reassured that everything should be okay. I am getting no feedback at all from our doctor and I feel like I am going crazy!!
My daughter is 6 months old and has been sick from nearly the beginning. At two weeks, I called her doctor to say that she was sick. She kept crying, coughing, and had green mucous coming out of her nose and eyes. I was told that she had colic and that I would have to learn to deal with it. I didn't feel right about that, since Faith is my 3rd child and neither of my others were ever sick at least until they were 6 months old. Anyway, I thought I was being paranoid, but took her to the doctor two weeks later when she kept getting worse. She was diagnosed with a sinus infection and was given antibiotics. She was still getting worse, so I took her back about a week later and was told that she had an ear infection and pink eye. She was given another antibiotic. She seemed to get a little better for about a week and then started coughing even harder than she had been before. I took her back and was sent home since she just had a cold. She kept getting worse where you could hear her breath from the other side of the house and she would cough so hard she would throw up. I took her back again and was told that she had bronchitis...she was given another antibiotic. She kept getting worse and was coughing so hard she couldn't breathe at the end of her fits of coughing...also she would grunt at the end of her spell. I again took her back and had to fight for a chest x-ray where she was finally diagnosed with pneumonia and given another antibiotic. Since then she has been diagnosed with 3 more URI's and given 3 more rounds of antibiotics. She still has a very wet sounding cough daily and a runny nose - clear and/or green or yellow. She will sometimes spit up some clearish slimy mucous with green chunks in it after a particularly hard coughing fit. She has had a low-grade fever off and on since birth. Her bowel movements used to be very loose and she would mess through sometimes 5 outfits in one day, but are now a funky "Hulk" green color, and thick - but not hard and smell horrible! (Way worse than my boys did as babies). She weighed 10.6 at birth, 10.8 at 2 wks, 11.4 at 2mos, 12.6 at 4mos, and is 17.4 now at just over 6 months. (My boys were 9lbs at birth and grew steadily and were 25lbs at 6mos.) She is a wonderful baby and has a very sweet disposition...Please let me know if this sounds like CF or not. I have an appointment at a Pediatric Pulmonologist on July 20...but I am going crazy waiting...two more months!
Please respond ASAP!!
Thank you all so much - sorry this is so long!
Answer:
first off i want to say i know how stressfull this can be. i found out 5 months in that i was/am a cf carrier. my husband went in and got tested right away because both parents have to be cf carriers to give it to the baby and then there is only a 25% chance for full blown cf. my husband is not a carrier so we are all good. however, my son has had 2 pretty good colds and some mucus in hus stools (he is now 11 months) durring the times that he is sick and i see the mucus i get so worried that maybe they screwed up my husbands test and my son does have it. he has even dropped to the 5th % for weight, bordering on failure to thrive. however, on the side of reality....he has had 2 colds, thats it. the mucus is from a food sensitivity and the weight loss is because right around that time he learned how to crawl and he has not stopped moving. he has been walking for 5 weeks now and i feed him non stop.
as far as your daughter goes, you can do several things. take her to the er when she is sick and they will test her right away for cf if you express your concerns, you or your husband could be tested, or call the doc office and see if they screen for cf at the newborn screening. my state does, i found out after worring even more. there is no point in playing the what if game without the information. i personally think you should, and i am sure you will, get to the reason that your baby falls ill often. i doubt if it is cf, but you need to get some answers before you know what you are up against. good luck.
Answer:
First off let me say- I pray your child does not have CF. The symptoms you described could be many different things, but for your piece of mind, CF needs to be ruled out. Definately call your OB and see if CF screening is part of the regular newborn screening- that is of utmost importance. Please do that ASAP, then you can disregard the rest of this-
I lived through the same situation - same age, pnuemonia, weight loss, salty tasting skin- I read about CF, got a bad feeling. I had to insist to my pediatrician on SEVERAL occasions that my son needed a sweat test. I kept getting put off, told by a nurse to "Get off the internet, you don't know what you're talking about - you can't diagnose CF that way". Finally he scheduled a sweat test (which does not hurt- its non invasive) for a month later- that was just too long for me to wait, I was going absolutely mad at that point, so I called the lab myself and was in by 9 the next day. We had our positive result by noon.
I don't want to scare you, which I know I've already done. But if the waiting is killing you, which I know it is, you need to tell them that 7/20 is TOO FAR AWAY. A sweat test can easily be done to put your mind at rest. 2 months of wondering and worrying is not fair to you & your family. Please be persistent, you have more control of the situation that you think.
My son is 20 months and doing very well. He's my little sweetheart & is just as cute as can be.
Answer:
I agree with Sherry don't wait that long. Even if it means changing Peds. its for the best. Give them no other choices than to do the test right away.
I was one of the lucky ones I knew that my daughter's father as carrier because he had a child already with CF. I never dreamed that I would be a carrier but when I found that I was pregnate I asked my ob/gyn for a DNA test to check and bam, I was a carrier and at 14weeks in to my pregnacy I had an amio and my daughter was positive for CF. I gave birth at the Univercity of Kentucky and our CF doctor was there in the delivery room with us and her treatment got started right away. She is now 7 years old and has had a problems but we was able to get a head start on it and she hasn't been in the hospital in 3 years.
I wish you the best of luck and will keep you in my prayers if your child does have CF you just have to keep on top of the treatments. Just because they seem well you can't get relax because often thier lung functions can drop with no signs , it seems that the children adapt to the changes my daughter has a low lung function but still runs and plays; matter fact she sometimes goes to much for me to handle.
Good Luck and please keep us posted.
Carol
Answer:
Ditto on waiting on the test! Time is off the essence if your child does have CF, you could begin working on treatments to keep the lungs healthy and clear, making sure your child gets proper nutrition, digestive enzymes.. If your child has CF, you don't want to risk getting an infection and possible lung damage.
We were "lucky" because our child had a bowel obstruction at birth and required surgery immediately. So we knew right away and while we were waiting for him to recover, we spent that time learning how to do the daily b-d's (bronchial drainage) treatments, adminster medications, feed him enzymes...