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It may also be that the antibacterial "hanitizer" (as my daughter calls it) is used more often since it is easier to do than the soap and water thing. Andrea mom of Rachel 6 with CF and Jonathan 3 months carrier

Shelby and Maria (and anyone else who is interested) feel free to check out our site at http://groups.msn.com/TeamRachelJane Racehl is about to turn 6 and was diagnosed at 9 months. She was in and out of the hospital alot at first. it can change. Rachel hasn't been hospitalized since she...

I had originally planned to go back to work a year after I had Rachel and that would have put her in daycare. She was diagnosed at 9 months. The doc's at the time said that it was better for her not to go into daycare situations because a lot of the time other people send their children in...

There is definately the food=power issue going on with my daughter. with all the pleading that we have done over the years and all the bowing to what Rachel wants to eat, when she wants to eat it (Ranch dressing on a soft pretzel at 8 am? Sure, would you like some parmisian cheese with...

Nedda, hi, a g-tube goes into the stomach, a gj- or j- tube goes in through the stomach and then down into the upper intestines (jejunum) If you do not do the fundo and the reflux is not at least partly controled by the meds, a j-tube would be safer than a g-tube because the feed would not sit...

Don't be too offended by the person who is angry at being a carrier. Anger is a natural part of greif. maybe they are greiving the loss of the "normal" status that they believed all along that they had? Also lots of people get angry when the feel like something is out of thier control. And...

I just wanted to clarify things from my post too. We opted for the genetic testing through amnio so we could prepare for another child with CF if our 2nd child had it. (things like should we be watching-through ultrasound- for bowel blockage, should we choose to deliver this child at the...

Hi Nedda.I'm the mom of little girl with CF and reflux. My daughter was not diagnosed with either reflux or CF until she was 9 months old but she had the reflux from the begining. Rachel is on Reglan for her slow emptying and zantac for the reflux. she had to have a g-tube placed when she...

I know very well what you are going through. I try to sneak stuff in all the time. I do heavy whipping cream in whole milk with some powdered milk to boost the milk cals. My daughter loves ovaltine so I add that too. We also use a product caled duocal. we add it to milk, soup (once it has...

Oh My Gosh, I am so sorry for your loss. your post just about brought me to tears. My daughter is 5 and 1/2 and I will be delivering our son next week. I did not hav the CVS but had the amnio with no complications. Just a bit of cramping that day. We had to wait until I was about 18 weeks...

I have been thinking about you and your baby. I hope all is well and it is not CF. I agree with the others, get a new ped! this one needs to have her head examined. Most breast fed babies THRIVE unless there is a real problem with the mom's nutrition. Andrea

Doc's never want to give "bad news" over the phone. Spme people really hate to get bad news on the phone, some would rather have a bit of privacy from the doc after gettting this kind of news. If i had to guess, maybe they ran a basic CF screening test with the blood to see if they saw any...

Sweat is salty no matter what. People with CF have VERY salty sweat. try letting the child get sweaty and then let her cool off. if you kiss her then and taste a lot of salt (more than you would expect) that could tell you if her sweat is more salty than usual. Before my daughter was...

Hi,a CF center is the place to get the sweat test because they have more experience administering it than a local hospital would. The sweat test can be tricky to do and some places make a real mess of it. the mutations are found in the genes usually via a blood test or a cheek swab. There are...

When my daughter was first diagnosed with CF and pseudomonas almost 5 years ago we were told that once it is there, it doesn't leave. That said, she cultured it until her culture in october of this year and hasn't had it since. The new thinking seems to be that it CAN be eradicated through...

hi,Lose mucusy foul smelling stools are very common to those with CF. The very salty sweat is too. However, some people have the same stool problems with ciliac's diease and/or allergies to milk sugar (lactose), milk protein and soy. I don't want to be a downer but combined with the sweating...

hi,I am glad that the doc seems to be seeing reason, at least to some degree. There are other things that cause failure to thrive but combined with the other symptoms, there is at the very least something gsastro related going on. The yellow stool/stains are fat not being digested. Also the...

Dave,I am not sure where you are from, but that is not quite true where I am (U.S.) Ambry tests for all or almost all of the genes known thusfar. it is a pretty expensive test and not usually the one they do first, but with 3 positive sweat tests and no mutations in the basic screening, it...

I am so sorry that you are going through all this. I know first hand how hard it is to deal with this diagnosis, but I can't imagine having gone through so much misdiagnosis beforehand. It is unfathomable to me that the doc's did not diagnose CF with 2 positive sweat tests, let a lone 3. (if...

Melissa,with a maiden name like McDaniel, you must be at least part Irish, so yup, European! I hope no one took offense to the "McSomething or MacSomnething" comment. I was just meaning names that are typical of Europeans and being Irish and Scottish myself, I used my own heritage as an...