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Hi Melissa,First of all, Remind the doc that "Hispanic" names originated in SPAIN, a country in NORTHERN EUROPE!!!!!!!!!!!!!!!!!!!!!!!!! Just because your last name is not McSomething or MacSomething doesn't mean that you are not of European descent!!!!!!!!!!!!!!!! People in Spain DO get CF...

I would go over the dosing with the people at day care. Also mention it to the docs. it seems odd that it is only happening at daycare. Could she be having more fatty foods than you realize at daycare?Could there be a potty training issue happening too? (as in we are trying to do it at home...

The vests are both done by chest circumfrence not age. I think tha the chest has to be at least 16 or 18 inches to get a vest. My daughter got her Med Pulse vest last year, she was 4+. There are 2 vests, the Hll-Rom (used to be ABI) and the MedPulse, they both use the same base measurement...

Tammy,I hope that your baby doesn't have CF. My daughter didn't really show symptoms until she was about 6 months old, but some babies are born with cf related health problems. It just depends on the child. If the baby has CF than both you AND your hubby would have to be carriers. (except...

I think how effective the vest is, is a very subjective thing. A lot is dependant on how compliant you are. My daughter is 5 & 1/2 and when she got her vest a bit more than a year ago it was like heaven!!!! she would sit and watch her shows or a video and it was fine (as long as we padded the...

Hi,I learned this tip from someone on this site! It worked for us, I just had to make an adjustment. I gave my daughter tic tacs and told her to swallow them without chewing them. This didn't work until I figured out that I bought a flavor that she really liked and that was why she was...

Carrrie, I am no doctor but if your child has nothing but constipation type poops and bleeds with most of them, there HAS to be a problem. Most kids with CF do have very loose stools, but constipation is often a problem too. My daughter actually went back and forth between the 2 problems for a...

Hi I wanted to reply to a few things here. Carrieinbc,It is not all that uncommon for kids with CF to be very constipated with really hard stools. Also the rectal prolapse is common in kids with undiagnosed CF. Chronic nasal infections are extremely common in CF kids. Has he been checked for...

The vest has a range of prices, depending on what one you get. The price is more like $16 thousand though. Rachel's insurance covered it, so we were very lucky. You can go to www.thevest.com or to look at that brand or the one that we have is by a company called Electromed. I think that site...

Oh Yeah!Rachel has one of those balls too. In some stores they are called "hop balls" or hoppers" Rachel doesn't use hers as much now that she has her mini trampoline, but she started on the hop ball at about 2 yrs old. The respiratory therapist actually recomended the hop ball to us the last...

Carrie,forgive me for butting in here but I would insist on a genetic test. Skip the sweat test altogether (or at least make sure that it is being doen in a reputable CF center and not a local hospital). Ask for the AMBRY genetic test. They test for the most mutations. Some of the less...

The bleach water combo is great for cleaning but remember to rinse well with plain water and dry the surfaces afterwards. If you don't rinse the bleach well, it is poisonous. Bleach on hand, hand in mouth.......one very sick baby! I am glad that the gate idea helped!Andrea

Hi,My daughter is now 5 & 1/2 and has a vest (we only have to struggle about half of the time to get her in it) but i remember so well the days of needing my hubby to help me do PT because I needed someone to hold her down while I did the percussion. Rachel was dx'd at 9 months so, it was hard...

You could join the National Cystic Fibrosis Awareness Committee. Since the CFF is not really into raising awareness the NCFAC was formed to fill the void. I went on a local cable news show to raise awarenss in my area as a member of the NCFAC. I also send all press releases to my local TV...

Hey Rebekah,don't flip out if your son still cultures psuedomonas or gets it back. My daughter cultured it from the time she was diagnosed at 9 months until this past October when she turned 5. She hasn't had it since, but if she gets it back, there are a lot of good meds out there for it...

Hi all, I was just wondering if any of the kids who have been coughing or coughing when crawling have reflux? When My daughter was at the crawling age she HATED to be on her tummy or all fours because she would cough form her reflux! She ended up skipping the crawling thing entirely because...

Hi My daughter Rachel is 5 she has G551D and 1898+1G->AAndrea

Hi,I am Andrea. My daughter Rachel is 5 with CF (G551D and 1898+1G->A)We are from Upland PA (near Philadelphia) USAWe are also expecting a baby in July who is just a carrier (G551D)Andrea

WOOOOHOOOO!Rachel finally has started swallowing her Creon 5 pills instead fo having them in babyfood peaches! This is a big step forward for her. She had agreed to try it with the tic tacs, but after a few times gagging on them she didn't want to do it anymore. Then, I bought a flavor of tic...

Hi,When my daughter was first diagnosed I became a freak about doing CPT on schedule, everyday. It was a lot of work because she was getting it 3-4 times a day. Now she is down to 2 times a day and is very healthy. I was told by a friend who has an older child with CF that it is not the end...