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Have they absolutely ruled out Crohn's through biopsy and blood test? I only ask because my son had horrible GI issues for years before he was finally diagnosed. Now that he has the meds he has made a complete turn around. Has he tried eliminating grains, corn, nuts, uncooked veggies and...

My oldest DD has CFRD. A fwe months ago we were looking at a possible insulin pump. Then she didn't need insulin at all. Now she is back on insulin. Her blood sugars go from 59 up to over 600 in the matter of 2 hours, once she gets Novalog her sugars will drop back down to 300's in an hr...

My oldest just went from 70% down to 40% and aside from an incredibly nasty wet cough and very slight weazing we had no idea it was THAT low. The only thing she cultured was moderate staph. We just got done with 3 weeks of IV's, a round of prednisone and increased vest times. Her PFT's went...

My oldest DD just got her new port a cath a few weeks ago. We are on week 3 of IV meds and her second needle failed. First time was when the home health nurse was here and she tried to flush her with heprin after her Tobi ran through. The saline went just fine but the heprin wouldn't go...

I do not know of it being in the arm. My DD (only 14) has hers under her arm basically where the base of the bra strap would be. She has more freedom to do stuff when she isn't accessed because it's in an area not as likely to get hit. Plus no where near as noticable even when accessed...

I would go to a special pharmacist. I can't remember the name but there are certain pharmacists that have the ability to mix compounds. Only thing is the mix is good for 10 days only. I'm not sure how liquid it is or how well it will work. A friend of the family tried making a liquid enzyme...

So my oldest DD was admitted Tuesday after her PFT's took a serious nose dive. She went from mid 70% down to 45% in a month. This was after she had been on an oral antibiotic. After about 3 days of Tobramycin and Fortaz her PFT's went back up to mid 70's. She is home now on IV's and goes back in...

I would be LIVID!! I have one more than one occasion gotten NURSES and "baby doctors" (residents) removed from my childs care. A hospital is a BUISNESS you have the right to amazing service since you are paying for it. IF a nurse is having a bad day they need to excuse themselves and take a...

I don't have CF but I had something simlar happen a yr ago. It ended up being a cholesteatoma which is basically a growth in the ear. It does require surgery to fix though. I always have ringing in my ears so that wasn't new to me just got a bit more intense. Usually if it is caught early...

Has anyone here gotten the skin it covers for their vest machines? My oldest just got her dino machine changed with the new smaller one and I saw the hand out for the skin it that was included in the cost of the machine. We got skin it's for the girls glucose monitors and they stick really well...

My oldest DD will complain of pain at times she has started using a cloth folded up under the vest where it hurts and that has helped alot.

Hi Janelle, Both my daughters have a g-tube. My oldest got hers through a complete surgery when they put in her port a cath and did a fundoplycation. She is a tough nut so for her pain management is really for our comfort because she hides it alot. I will say her nurses were quick with the...

My DD and DS have been having a dry cough lately. My DD's has lasted about 3 months. It is totally spiratic and just sounds painful. She is not coughing up anything. Last CF visit last month I addressed this with the doc. While in clinic she coughed a few times so he heard her coughing. Her...

The cf clinic called and said my oldest DD's vit D is low and she should now take two source CF's. She is already taking one source cf, 1 vit D3 2,000 IU's, faxseed, garlic, fish oil, and vit C. I told her she was supposed to take a second source CF and she groaned. So now I'm in search of...

My mom had copd and was on oxygen for 5 yrs before she passed. During the last year of her life she cultured PA. My family could not comprehend the danger her infection posed to my kids. It was heat breaking. The other thing to think about is your child carrying something that could hurt the...

My mom had copd and was on oxygen for 5 yrs before she passed. During the last year of her life she cultured PA. My family could not comprehend the danger her infection posed to my kids. It was heat breaking. The other thing to think about is your child carrying something that could hurt the...

Feeding pumps depend in the medical supplies provider you use. At least it has in my experience. We have had the super nice kangaroo pump that part was detachable to a really old dinosaur cruddy model. We move alot that's why ours has changed. Eznymes is really how it works for the kid...

Feeding pumps depend in the medical supplies provider you use. At least it has in my experience. We have had the super nice kangaroo pump that part was detachable to a really old dinosaur cruddy model. We move alot that's why ours has changed. Eznymes is really how it works for the kid...

Thank you! She was tested for RA and it came back negative. According to the rheumatologist that doesn't really matter? Now they think it might be immune complex arthritis. None of the OTC's work for her at all. Apparently this is a normal course of treatment. I worry though with all her...

Thank you! She was tested for RA and it came back negative. According to the rheumatologist that doesn't really matter? Now they think it might be immune complex arthritis. None of the OTC's work for her at all. Apparently this is a normal course of treatment. I worry though with all her...