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From what I have read this contains many of the CF characteristics. Including mucosa, lung infections, etc.. However, I am wondering since it is not very known and they haven't figured out the DNA of it yet do they know that it is not related to CF? I would think it premature to make that...

We just got told over the phone that the 36 panel DNA mutation test came back negetive. This is crazy but I am not as happy as I thought I would be. This puts us back at square one. I am not sure where to go from here. How much do you fight? Is it likely that not even 1 mutation would show up on...

I have to wear medical alert tags for all my medicine allergies. I was wondering how many people that have CF wear them to notify paremedics in the event of an accident or breathing problems. I think I may add this question as a poll if I can figure it out. Do you feel it is a good choice to...

I have been running into a lot of this c*@p lately. Most of our family members keep questioning why we are getting all these tests ran on our son. I have been getting comments like "well he doesn't seem sick right now", "he looks just fine", "all the sicknesses thus far are probably just a virus...

I was doing research on webmd about the current meds our Dr. has our son on yesterday. He was tested for allergies and had none yet the doctor gave him more perscription allergy meds. As I was looking it up (Nasonex) the dr. has perscribeb my son twice the normal/known safe dosage for a child...

My husband wrote this to Dear Prudence this morning. The nerve of some people. Why do people find it necessary to be so mean? Time heals all things, as the saying goes; it would seem I am not that fortunate. Over the course of the last two years, my wife and I have received several articles of...

Well, with Maxwell we still don't know about CF he is scheduled for a DNA test and Sinus CT on Thursday 22nd of June. However, our family battles with rare diseases has just begun. We started a curiosity in our family and many members are now going to the Dr.'s. My niece (17) just went in for...

attaching a photo let me go step by steps. I will have to attach a photo myself to explain it step by step. 1. click on attach file 2. click browse on the top of next screen 3. select the photo you want to attach 4. double click on the photo (it will now have it in the box to the left of the...

So I have heard reference to a "minor" mutation (I use the term loosely); is there such a thing? Do all mutations of CF end with the same result? Or do "minor" CFers live longer then other CFers? I don't understand this. The doctors say our son may have a "minor" mutation and that is why it has...

you can copy and paste this in your browser to view. I created this today so I can keep my family and friends up to date on my son. It is a great alternative to tons of emails. If you want to check it out please sign Maxwell's guest book. It makes him feel important! It is also a way for those...

Yet another appointment new Dr. different recommendations. Maxwell was seen by an ENT sleep therapist today. He has a sleep therapy evaluation on the 26th of June. This Dr. flat out said I do not know a lot about treating CF, but I have been trained to spot signs and the Allergist is on the...

I have been wondering... For the past month (since we 1st saw the allergy specialist) Maxwell has been doing "sinus flushes" 2 times a day. We have noticed that one sinus has about 1/2 clearance (the other is still blocked). However, it sounds like the build up has relocated. He has been...

After leaving several messages with the Dr. speaking with the Dr. at Denver Children's Hospital, the hospital that ran the test (PVH), & the CFF Denver chapter we have concluded that the 49 chloride along with a medical history of Failure-to-Thrive (infant), Hyperthyroid (infant), anemia...

We have finally got the results back. Our 3rd child had a 49; borderline. Now I am fighting because the hospital that ran the test says that CFF lists 25-60 as normal and 60-80 high.. No in between. However, CFF says 0-40 normal; 40-60 borderline/grey are; above 60 abnormal/definate. Now with...

It has been 24 hours since the sweat chloride test was finished.. The dr. was supposed to have the results within the hour. I have called twice and gotten no response. My mother says no news is good news, but is it really. I envy everyone that knows what they are dealing with and are able to...

My son Maxwell (5) has a scheduled sweat chloride test on Monday (the day before he turns 6). I am concerned for many reasons. The doctor ordering the test has also tested Max for IgG deficiencies, they came back clear. Maxwell has had recurrent sinusitus since birth, along with Failure to...