RE: Cystic Fibrosis

[startx]

 
Anybody here dealing with this, or have children dealing with it?
 
 Could just be a scare, but the baby has had quite a few respiratory problems, and now that they say it could be Cystic Fibrosis, some of her digestive problems could be related.  She is being tested on Wednesday [], hopefully she is just a baby with a little asthma that causes her trouble, but we should know for sure by the end of the week.

[Acts 2:38 girl]

 startx
Startx, I hope it s not.  I don t know much about it either, but we have a prayer group we go to every Tuesday night and we will definately pray for her.  Please keep us posted. []

[wiininkwe]

 startx
I ll be saying prayers too, and just for the record, we went thru the same scare with my oldest when she was just a tot.  It did turn out to be some real severe allergies, compounded by asthma, which is bad enough, but much better than the alternative.  Maybe that s what you have going?!  I hope.
 T
 

[maromeo]

 startx
Startx,
 I was in your boat 15 yrs ago. There is hope even if it is Cystic Fibrosis. There has been so much advancement with locating the gene, and new medications of how it is treated. My son was 3 when he was diagnosed with it. He had stomach problem his whole life starting at birth with projectile vomiting, so formula was changed, changed and changed again to a predigested formula it helped for awhile. I understand your frustration. We then got into asthma diagnosis, he then was put on a nebulizer was used 3 times a day for his breathing. I had to watch his activity day by day. It was hard to curtail a 4 or 5 yr old from playing. He learned to play or read quietly most of his young years. He had many breathing attacks during these years. I had a slant board and would have to pound on his back to break up the mucus and congestion in him. It is not a fun process but it can be dealt with. It just becomes part of your day to day functions. At the age of 10 he came home from school and announced he wanted to join the band at school and play the trumpet! I explained to him it may not be possible with his breathing problems but guess what. By the time he finished his 6 grade year and two years of band. His breathing problem was about 75% better. I couldn t believe it. He is now almost 19 and has no problem with the cysitic fibrosis what so ever. I have to admit the breathing excercises helped along with the developement of his body. So take care and there is hope and stay strong. I was a single parent going through this by myself with no family in the area to help out. If you have any questions you can email me. Take care.
 Mary Romeo

[tlhdoc]

 startx
Our school district has several children with CF.  One girl was in my DS s class for 4 years.  She had a lung transplant 2+ years ago and is doing wonderful now.  I pray that it will not be CF, but if it is there are many options available now that were not available just a few years ago.  Let us know what you find out.

[CampinCrazy]

 startx
Barb, Oh goodness!  
 I hope that sweet pumpkin is just fine.  Can t believe we were just hearing her good, CLEAR lungs just a week ago!  We will keep you both in our prayers and hope for the best.  Just remember that if it is CF - there are LOTS of success stories out there.  My good buddie is now 36, married and running marathons since his lung transplant.  He s in Arlington - so if you want/need more info I can put you in touch with him.
 Keep the faith, ~Kelly

[startx]

 startx
It was NOT Cystic Fibrosis, she tested negative for that.  So probably she just has allergies and asthma.  Nothing really to worry about, we just give her the inhaler, but the Dr wanted to be sure!!!

[Acts 2:38 girl]

 startx
ALL RIGHT!!!  [] [] [] [] []
 I m SO happy for you and your family!!  Hopefully her health will improve quickly, even asthma can be a scary thing.  
 BTW - we did pray for her Tues night, I m so happy things worked out for her!

[fivegonefishing]

 startx
Barbara, I am so glad it s not CF.
 
 As a parent of two children with life threatening food allergies and asthma and an asthma sufferer myself, do not think lightly of this desease.  Find the best respirologist you can.  My one son suffered from sever reflux and for 8 months kept loosing weight.  Luckily his esphagus and " floopy valve"  matured enough that he could keep food down and start to gain weight.  
 
 Wow, four kids, what a handful and delight.[]

[wiininkwe]

 startx
Glad to hear this good news.  But, as was said earlier, don t underestimate the asthma and allergies, they can be very debillitating as well.  Find a good allergist, make sure that you try to eliminate as many of the triggers to her problems as you can.  (I know that it s almost impossible, and sometimes you may have to make some concessions)  One thing is to gauge the emotional aspect of some things.  For instance, my DD was has since outgrown some of it, and built immunities with allergy shots to others) very allergic to pet dander, but we had an Irish Setter that she just adored.  Our allergist was of the opinion that the dog was an important part of her life, and we made some adjustments so that we didn t have to get rid of the dog.  
 T
 []

[maromeo]

 startx
Startx,
 Great News for you and your family. Find a good allergist to help narrow down her allergies, asthma and treatments.  Take care.
 Mary Romeo

[tlhdoc]

 startx
I am glad it isn t CF.