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A side note: This thread inspired me to have my daughter reorder one of her medications from the pharmacy. I showed her how to get on the phone and ask the pharmacist for a refill. she was actually very anxious to do this; I guess kids text more now than talk on the phone. I told her we have...

Littlelab, You have some good insight. My daughter did take the day off from school. I let her make that decision. I did ask her if she thought she needed to call or go to the doctor and she said no. We both were comfortable seeing how she felt with rest, extra fluids, extra neb and chest...

She seems ok. She still said her chest hurts, she thinks she might feel "tight". So she's taking it easy,we'll do an extra albuterol and chest pt. She's tired too. She wants to rest up so she can go trick or treating tomorrow. So maybe just some inflammation and remnants from a cold she had...

Curious as to why the doctor wanted to take him off the enzymes if they were helping your son gain weight? Is this a CF doctor?

Yeah, I think I'll tell them no, I gave her some zantac and ibuprofen but my guess is she might be coming down with something? Lots of people in our town are coughing and complaining how bad they feel(these are adults at work etc, non CF folks) I kept thinking I hope my daughter doesn't get that.

So I picked up my daughter after school. She says oh I don't feel good today. Started after lunch but she said she didn't want to bother me or go to the nurse because I was at work. She said she was nauseous, had a headache and it hurt to take a deep breath. No fever. Min cough. question is...

Do you take? What brand do you take? I do give fish oil daily to my daughter. In the past I had bought Nordic Naturals. last time I just got what was at the drug store. Thinking of going back to Nordic Naturals...What types do you use?

Actually, genetic testing on CF patients absolutely does change treatment.. The insurance company is wrong. I would contact a lawyer if you want to pursue testing. Two drugs: Kalydeco and Orkambi target specific CF mutations and are only prescribed if the CF patient has that particular...

First of all, It's great your daughter is doing well! I breastfed my daughter with CF too, so if you have any questions I hope I could help. M daughter is now 12. About the sweat test, I don't know about the high sweat test and correlation with severity. There are so many factors that go...

Do you live in a very hot climate where your baby would be sweating and losing salt? When my daughter was born they also suggested the salt 1/8 tsp mixed in a bottle of expressed breastmilk. My daughter hated the bottle and would throw up the salted breastmilk. I tried a few times and stopped...

I am sure you know but iron supplements can be constipating. My daughter with CF loves fruits and veggies; in the past she has eaten dried fruit to get things moving, prunes and dried apricots. Now I buy dried mango and dried pineapple(which taste like candy:))..My daughter calls them poop fruit.

I went to the pharmacy to refill my daughter's Nasonex and it is on back order until December. Wondering what you all use besides Nasonex for nasal polyps? She does her Nasonex 2 squirts once a day.

I use Pari baby masks (which can be boiled), not the Bubbles the fish mask. you can get them here:http://www.vitalitymedical.com/pari-baby-conversion-kit.html They are more expensive, and my daughter is 12 years old and we use the Pari baby size 2 mask.

The no straws and no carbonated drinks are to prevent gas and bloating. I have heard this from GI docs as well as surgeons. The theory is when you suck from a straw you are bringing in more air into your belly. The carbonation in the bubbly water and soda can also get you bloated.

Also, have you had a belly X-ray?

oh, and other recommendations for gas, bloating were no gum, no sugar free substitutes, no straws, no carbonated drinks.

Do you see a GI doctor as well? I do agree that the IV's throw off the balance of bacteria in the gut(and else where) The probiotic that my daughter is on was recommended by her GI. It is called VSL#3. It supposedly is stronger than Culturelle.

Before the advent of genetic testing for CF, the sweat test was the"gold standard" for CF testing. Since CF is a genetic disease; the person with CF gets one mutation from the mom and one Cf mutation from the dad. When they do blood work for CF on your child they are looking for those 2...

also, is the doctor ordering all these tests a pediatric CF specialist? If not; that is who your daughter needs to see.

Pretty sure there are over 1000 different CF mutations. Did your daughter have her sweat test at an accredidated CF center? I would get the CF blood mutation analysis done to rule out CF if it was my daughter. With your daughter's history, sounds like insurance would/should cover it. When...