My 19 month old & a stubborn doctor

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daniac3

Guest
My son is 19 months old. About 5 months ago, he developed a wheeze and very bad cough and was diagnosed with croup. After the typical treatment for croup, his condition was the same. He was treated with albuetrol daily with no change. About 2 months ago, I took him to the ER where he was treated with a steriod. A week later brought him back because his condition was the same. Treated with steriod again and told he has asthma and that he is wheezing. 2 weeks ago, he saw a doctor who said the noise I had been hearing for so long was in fact congestion. She put him on Pulmicort given morning and night on a daily basis. I have brought up getting him tested for CF, knowing breathing issues was a known symptom. After doing lots of research, I am noticing he has more then just one sign. He has had daily diarrhea since about 9 months old, which I was told was part of "toddler teething". After talking to my mother today, she said that anytime anyone of her 5 children was sick, we never should "typical" symptoms of whatever it was we ended up being sick with. I do not know my father's side, nor his medical history, and my son's father's side has been unhelpful in collecting information. They did not do a CF test on myself or my son's father while I was pregnant.

I'm wondering how parents knew there was something wrong and what they did to finally get their dr to listen to them. I am a young, single mom and I feel like my Dr thinks I am naive and not taking me seriously.
 
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ajlindsley

New member
Are you in the USA? If so, in your son's newborn screening he should have had a test looking for CF. Call his pediatrician and see what the results say. The screening can miss some with CF but it is at least a starting point. How is his weight and growth curve?
 
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JennyCoulon

New member
In our state CF testing is part of the newborn screening. There were signs like runny stools, stinky gas, and no weight gain. I would ask them to test him.
 
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daniac3

Guest
He used to be in the 70% to 90% for growth and is now in the 30-40%. His CF test as a baby was negative. His stools and breathing problems have been the two biggest issues. There's also the salty sweat, excessive drinking and eating.
 
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JennyCoulon

New member
Those symptoms sound just like it. I would maybe have them re-test and maybe even call a CF clinic and talk to one of the nurses. I cant think of anything else that would have those same "CF" symptoms. I would go for a second opinion.
 
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Printer

Active member
Newborn screenings tests for only 39 known mutations. There are almost 2000 known mutations any 2 of which will cause CF. Forget about that screening.

Tell your Doctor that you want a referral to an APPROVED CF CLINIC to see a CF SPECIALIST. If she does not agree, tell her that you will find a PCP who will give you the referral. Your child's health is the issue, not her ego.

Bill
 
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daniac3

Guest
Thank you all very much. I've been in need of lots of advice. For whatever reason, my Dr isn't linking the multiple symptoms together. They don't seem to be as extreme as other stories I have heard, but its enough to take some action. If anyone knows if CF specialists in the Philadelphia/South Jersey area, I would love to hear recommendations.
 
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Printer

Active member
Children's Hospital of Philadelphia is one of the best CF Clinics in the US. Just be sure to see a CF SPECIALIST. Ronald Rubenstine, MD is the Director of the CF Clinic. The phone is 215-590-3749.

Bill
 
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