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Hugs and prayers for your little girl from friends in PA.

Hi, Justin passed the sweat test with flying colors. His numbers I think were around 19. I was told that this mutation gives a false negative. We were told that we could do nasal testing at Hopkins (where he is a patient) but that they were convinced that he has CF so it would only be to...

Kyeev, Thank you so much!! If his mutation is so mild, why is he completely pancreatic insufficient and showing small airway issues at 8 years old? Does this mean that the second mutation may be more severe or that together they are more strong? If so, would fixing the F1052V with Kalydeco...

My son is on Singular and Flonase. We were told not to use Claratin or anthing that is an antihistimine because it dries out the mucus. We were told if really needed, he can do a day or two but no more. Maybe your CF doc could work with the allergy department. Justin has more food than...

Does/can staph turn to MRSA?

Hi, My son has F1052V and (the doctors agree) a duplication/deleation mutation that he has not been tested for yet (they did not test for these in his sequencing). My question is, does anyone know which group of mutations (F1052V) would fall under for the new drugs coming on the pipeline? I...

Hi, My son has F1052V and (the doctors agree) a duplication/deleation mutation that he has not been tested for yet (they did not test for these in his sequencing). My question is, does anyone know which group of mutations (F1052V) would fall under for the new drugs coming on the pipeline? I...

Jenny, Is your son on the saline neb? We were only put on about a month or so ago and I really notice a difference. He was having "bronchospasms" for up to 17 minutes. We also did a week of oral steroid because he was having the spasms just sitting down. Now he still has a cough on exertion...

Is it the turtle mask? It just came yesterday but it looks so small.

What are his 25/75 numbers like? Justin has the same thing but we just found out he has issues with his small airways.

Thank you all for your kindness and support. I am not sure we would get through this journey without you all!!! We do what we have to do, but it is a lot easier if there is a village of supporters along your journey!!

Hi, we have the side neb cup for hyper sal and I have a question about the masks. Justin is 8 years old. I ordered the adult mask and it is way too big. I just ordered the kids (I think it is a turtle) but it says for 5 and under. He still uses the fish mask for xopenex. What mask does your...

I wanted to post some good news. I usually only post with concerns, but today I want to share pride and good news. My 8 year old Super Hero will be throwing out the first ball of the season for one of our local colleges on behalf of CF. Also, he has rasied $11,000 for Great Strides so far...

We are in your boat too. We had a lot of nausea in the beginning of the year. Our 504 addresses (inadequately) the absence issues. Justin a sugession, have they considered bacterial overgrowth? Justin had that until a month or so ago from all of the antibiotics and had nausea every day. We...

I agree!! Difficult to read posts:) Thank you for your time and input!

Dear NMW, Either you totally misread my post or I completely misspoke. I do not "want [my] son to get two recesses" when he "is not completing the work and was thinking of using CF as an excuss". As someone who has had to endure CF and everything that goes along with it, I am shocked that you...

Hi, I would like any input on how reasonable this situation is. My 8 year old Cf'er (2nd grade) has been kept in from recess all week and several days last week because of falling behind in writing assignments. This is our first year of public school. While I understand the importance of...

Thanks, it sounds like this is just what happens with kids. Justin was on Flovent but was changed to Symbicort. it is both a steroid and long acting bronco. He is on it all the time to help with small airways. We do xopanex then saline then vest. He also uses albuterol 1-2 times a day...

Hi, I have a question about normal frequency of colds/virus thoughout the winter. My son, 8 years old, had a rough year last year when he was diagnosed. He had 4 bacterial infections back to back. He had either a bacterial or viral (put on antibiotic because of exerbation) in August and...

Hi, We were told that Justin can use clariton a day or two, but no more because of the drying. Our doc said that if the allergies are not bothering the child a lot, best not to use. We use Singulair 5mg and were told to use saline to rinse out the irritants. Hope this helps and thank youf or...