Madelyn's tests came back negative.

[LuvMy2Girls]

Well, I finally got a hold of someone at the drs. office and the nurse said her sweat test and Ambry test came back negative for any mutations. I don't know if I'm happy or not b/c now I don't know where to start over. I feel like a fool b/c I was so determined that it was cf and wouldn't let anyone tell me different. So, what do I do? She gets frequent lung infections, has slimy, green poop, or she is constipated( like today) and is behind in milestones. My 2 yr. old, Alana, hasn't had a solid B.M. in at least two months and is always tired and gets colds alot. I was thinking about it last night and this is kind of embarrassing, but I need to know. Ever since I was little, I have had bowel problems. It is something I'm used to and didn't think of telling the drs. I was told I have irritable bowel syndrome. I've always had a low immune system( unless I'm pregnant, for some reason) and have always been tired. Ironically enough, when I looked up celiac disease, that was listed as a side effect. But, also, celiac disease gives rashes and has an intolerance to certain foods...I do not and neither does Alana. She's allergic to pickles...that's it. So, do I need to be concerned with some pancreatic disorder that could be hereditary? Where do I start again? I have to know b/c the drs are obviously taking their time. I just hate seeing my baby cry when she poops. I hate seeing her hiny bleed b/c of how much she poops. Today she just sobbed and pooped 2 hard balls, the size of an Easter egg while clenching her fists around my arm and burying her head in my chest. When I changed her diaper there was blood of course. I deal with B.M.s like that all the time, but I'm an adult. She is 8 mths old and There isn't a thing I can do for her. Juice doesn't work. It makes her yeast infections develop faster. I don't know what to do. If anyone has any advice please tell me. I'm lost. If anyone prays, please pray for both my angels and the one I'm carrying now b/c I don't want another child who will have to go through this.

-Paige

 

[anonymous]

My heart goes out to you. I can only imagen your frustation. In regards to the B.M. have you tried Miralax..it requires a prescription but it is really benificial. It just helps regulate the digestive track by brining water into the intestines. This is something that gets prescribed for those with constipation and diahreah. Also another thing to consider would be having the stool tested for C.diff (this can develop if they have been on antibiotics) or introduce a probionic AKA: acidopholous (you can get it at the health food store or some grocery stores) and mix it in with applesauce to help balance the digestive system. Both my daughter with CF and myself (no CF) take it daily. If you haven't done so already you might want to get your children established with a G.I. doctor...sometimes working directly with the specalists is more effective then dealing with a primary care doctor (just depends on the doctor).

Good luck, just be dilagent and stay on top of things. I know the worrying and doctor visits are exahusting, I hope they can get things squared away soon.

 

[anonymous]

My son has the whole problems with bowls even before CF diagnosis, He has been on the bacteria supplements from the health food stores for a while, also my son is on it which doesn't have CF, when hes not then he has constant diahreah. Course he has had a GI doctor since 1 month old.

Ask the doctor about the bacteria, it works wonders.

 

[JennifersHope]

Constipation in a child can occur for so many different reasons.. I just had a patient with this disease recently. At first they thought it could have been CF, but it turned out to be Hirschsprungs Disease.

Here is a link for it.

<a target=_blank class=ftalternatingbarlinklarge href="http://digestive.niddk.nih.gov/ddiseases/pubs/hirschsprungs_ez/index.htm#1
">http://digestive.niddk.nih.gov...prungs_ez/index.htm#1
</a>
I hope you get some answers soon.

Jennifer

 

[anonymous]

If heard of using Karo syrup to ease constipation. I've also heard of using mineral oil, but be careful with mineral oil because you don't want the child to aspirate it into their lungs.

 

[anonymous]

My Avery was tested for Hirshprungs diesease as well as Celiac disease before her CF diagnosis. THey have similar GI symptoms. I would push to have tests for both of these diseases whether or not she presents all the symptoms. Good luck, you are in my thoughts. Even though CF is not a good thing I was relieved when she was diagnosed because I had an answer and ways to treat the problems. I can only imagine your frustration.

Lynsey
Mom to Avery 2 yrs. w/CF and Rhett 1 yr. no CF