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We have had a gtube for about 6 months for my 7yo daughter. She has only gained 6 pounds. We do 2 cans of peptamin jr. continuous feed overnight - we run it for 70 for 550ml. She looks much healthier and eats better during the day but we are not so excited about the slow gain. Our CF clinic...

Hi- My 7 yo with CF has been fighting 2 kinds of aspergillus -- terreous and fumegous (sp). I am a beekeeper and have been giving her a bee propolis tincture from our hive. It seems to have kept it at bay? She hasn't cultured it and she only really cultured it with a broch in the hospital. So...

Hi- My 7 yo with CF has been fighting 2 kinds of aspergillus -- terreous and fumegous (sp). I am a beekeeper and have been giving her a bee propolis tincture from our hive. It seems to have kept it at bay? She hasn't cultured it and she only really cultured it with a broch in the hospital. So...

I have actually taken my 7 year old to this exact salt room in Plano tx. They are very pro CF and have the Great Strides walk info all over there office. They also have a few infant and adult CF patients that go there. They NEVER schedule a CF'r together. Jim the owner and his daughter are very...

I have actually taken my 7 year old to this exact salt room in Plano tx. They are very pro CF and have the Great Strides walk info all over there office. They also have a few infant and adult CF patients that go there. They NEVER schedule a CF'r together. Jim the owner and his daughter are very...

My daughter with cf also had sinus issues. We had sinus surgery and her adnoids taken out when she was 5. It did seem to help, but we also had her checked for food allergies and took away her most higher ones which were peanut, corn and wheat for a year and her whole sinus issues are totally...

My daughter with cf also had sinus issues. We had sinus surgery and her adnoids taken out when she was 5. It did seem to help, but we also had her checked for food allergies and took away her most higher ones which were peanut, corn and wheat for a year and her whole sinus issues are totally...

Thank you!! Harriet, I love it that you are such an advocate for emily!! I agree if I was not given the choices and had to have a long tube I would seek a surgeon too! It's a girl thing!! <img src="i/expressions/face-icon-small-wink.gif" border="0"> I keep asking the cf and gi docs if this...

Thank you!! Harriet, I love it that you are such an advocate for emily!! I agree if I was not given the choices and had to have a long tube I would seek a surgeon too! It's a girl thing!! <img src="i/expressions/face-icon-small-wink.gif" border="0"> I keep asking the cf and gi docs if this...

The gi doc has given us 3 options for placing. G. Tube. Does anyone have opinions on these??? Here they are: 1- just a surgeon places the tube by attaching it to the stomach lining with stiches and then a mini button is placed right away. More invasive option with possible stomach moving or...

The gi doc has given us 3 options for placing. G. Tube. Does anyone have opinions on these??? Here they are: 1- just a surgeon places the tube by attaching it to the stomach lining with stiches and then a mini button is placed right away. More invasive option with possible stomach moving or...

Wow- that is great that you noticed a difference immediatly! I will for sure talk with the cf docs in the morn, of course they already made their rounds <img src="i/expressions/face-icon-small-smile.gif" border="0"> I just could not understand her tummy aches- poor baby! I am hoping that will...

Wow- that is great that you noticed a difference immediatly! I will for sure talk with the cf docs in the morn, of course they already made their rounds <img src="i/expressions/face-icon-small-smile.gif" border="0"> I just could not understand her tummy aches- poor baby! I am hoping that will...

Can you use sodium bicarbonate with a g- tube?? She will only have night feedings but i am assuming she can take it with her enzymes during the day? She takes creon and her weight is not improving. She is in the hospital now waiting for her lung function to go up before the g tube is placed. She...

Can you use sodium bicarbonate with a g- tube?? She will only have night feedings but i am assuming she can take it with her enzymes during the day? She takes creon and her weight is not improving. She is in the hospital now waiting for her lung function to go up before the g tube is placed. She...

Hi Karenmichelle- I am so sorry to hear your battles regarding your son. I have a 7 yo with Cf and she has gone through the same trials and tribulations that your son has gone through at such a young age. It breaks my heart too because my beautiful cf girl is so full of life and yet she just...

Hi Karenmichelle- I am so sorry to hear your battles regarding your son. I have a 7 yo with Cf and she has gone through the same trials and tribulations that your son has gone through at such a young age. It breaks my heart too because my beautiful cf girl is so full of life and yet she just...

I have 3 in elementary school too- 1 with CF and we wake her up 15 minutes before the others. She does fall back to sleep until the others are up. Then her "pat pats" are done and the whole house is on the same routine. With TOBI we fudge it and wake her up 25 min so she can still wake up with...

I have 3 in elementary school too- 1 with CF and we wake her up 15 minutes before the others. She does fall back to sleep until the others are up. Then her "pat pats" are done and the whole house is on the same routine. With TOBI we fudge it and wake her up 25 min so she can still wake up with...

We took a Disney trip when my 7 year old was on Cayston and we did it right in the corner of a resting area! When we were done i put the head into a tub of rubbing alcohol and poured bottled water over the rest of the neb. I then wiped it down with rubbing achohol wipes until we got back to the...