Hi! I was just wondering if those parents whose child was diagnosed with cf after the age of three would answer this question for me. What were your childs symptoms or what led you to get your child tested? I am concerned about a family member who is 4 years old and has some symptoms (I think) and there is a family history of cf on one side of the family. Thanks
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For Parents of Children Diagnosed after 3 years old????
- Thread starter anonymous
- Start date
You can read the full version of our story on the first entry of my blog page (link is in my signature line)
My daughter first started having symptoms at 5 years old but was misdiagnosed until age 13 ~ after genetic testing she was dx w/ cf, then we tested her brother (no symptoms) he too was given the dx of CF (at age 17 or 18 years old).
My daughter first started having symptoms at 5 years old but was misdiagnosed until age 13 ~ after genetic testing she was dx w/ cf, then we tested her brother (no symptoms) he too was given the dx of CF (at age 17 or 18 years old).
Courtney was diagnosed at the age of 10.
For four years prior to diagnoses she had stomach pains on a daily basis.
By the time she was finally diagnosed she was 10 years old and only weighed 48 pounds. Due to failure to thrive we finally had a doc preform the sweat test.
If you would to hear her story in more details, just let me know.
Seana
For four years prior to diagnoses she had stomach pains on a daily basis.
By the time she was finally diagnosed she was 10 years old and only weighed 48 pounds. Due to failure to thrive we finally had a doc preform the sweat test.
If you would to hear her story in more details, just let me know.
Seana
candiebar76
New member
my son (6 yrs) has yet to be dx. We are waiting for the results of the DNA test. Our Asthma & Allergy Specialist tested him for allergies which he had none. After looking at his history, Failure to Thrive, hyp<b>er</b>thyroidism, prolonged bronchitus (asthma not dx although considered), chronic sinusitis even after tonsill & adenoidectomy, the strangest is the "allergic shiners" (w/ no allergies both specialist we see can't figure that out) he recomended we test for imunoglobulin deficiencies and if that revealed no results we should test for CF. Well the ID's were all clear (nothing was revealed). So we decided to let him order the test for CF. His sweat chloride was 49 (grey area) and after me demanding we look more into it he agreed to order a standard DNA test (36 most common mutations). We will have the results Wednesday. If you want to learn more about symptoms visit cff.org; webmd.com;wikipedia.org they all have information.
Candace
Candace
Okay....I will try to make this as short as possible....but it is a long story.
First, Courtney's mutations are DF508 and one unknown.
Courtney was born a healthy baby. Within a few weeks she started dropping weight instead of gaining. She was seen weekly for weight checks, but nothing major. We switched her formulas alot and they finally said she was lactose intolerant.
The next six years were pretty normal other than she was a very small child.
When Courtney turned six she started having terrible tummy pain. I took her to doc after doc for the next four years. When they could find nothing they would finally tell me it was all in her head. Courtney could not go anywhere and started wanting to stay home all the time because every time she left the house she got a tummyache. (Didn't realize it at the time, but she was getting her tummyaches every time she would eat).
Four years, 3 states, and many doctors later I had enough! By this time Courtney was 10 and only weighed 48 pounds. She was literally skin and bones.
I took her to the doctors AGAIN and told her story. Thank goodness this time we had a doc that listened. We told her about the tummyaches and at night Courtney would get horrible burning pain in her tummy and would actually throw up.
I showed the doc that Courtney can place the palm of her hand flat on a table and turn her hand a full 360 degrees around. Now this is something I have never understood why this made the doc think of CF, but as soon as we showed her this she said she wanted to do a sweat test.
I would have NEVER believed it was CF because Courtney had never had any lung issues, but within one hour of having the sweat test done they called us and asked us to come back in to take a second test. Her first test was 98. Second test was 60.
Three hospitals, 6 sweat tests, and one genetic test later she was finally diagnosed.
Courtney still has very little lung issues. Her FEVs (or FEV1s...cant remember which is which) are 106%. Her main problems are digestive.
We had no family history of CF. Courtney's case really stumped doctors, and her case has actually been used in major CF conventions for doctors.
Let me know if you have anymore questions!
Seana
First, Courtney's mutations are DF508 and one unknown.
Courtney was born a healthy baby. Within a few weeks she started dropping weight instead of gaining. She was seen weekly for weight checks, but nothing major. We switched her formulas alot and they finally said she was lactose intolerant.
The next six years were pretty normal other than she was a very small child.
When Courtney turned six she started having terrible tummy pain. I took her to doc after doc for the next four years. When they could find nothing they would finally tell me it was all in her head. Courtney could not go anywhere and started wanting to stay home all the time because every time she left the house she got a tummyache. (Didn't realize it at the time, but she was getting her tummyaches every time she would eat).
Four years, 3 states, and many doctors later I had enough! By this time Courtney was 10 and only weighed 48 pounds. She was literally skin and bones.
I took her to the doctors AGAIN and told her story. Thank goodness this time we had a doc that listened. We told her about the tummyaches and at night Courtney would get horrible burning pain in her tummy and would actually throw up.
I showed the doc that Courtney can place the palm of her hand flat on a table and turn her hand a full 360 degrees around. Now this is something I have never understood why this made the doc think of CF, but as soon as we showed her this she said she wanted to do a sweat test.
I would have NEVER believed it was CF because Courtney had never had any lung issues, but within one hour of having the sweat test done they called us and asked us to come back in to take a second test. Her first test was 98. Second test was 60.
Three hospitals, 6 sweat tests, and one genetic test later she was finally diagnosed.
Courtney still has very little lung issues. Her FEVs (or FEV1s...cant remember which is which) are 106%. Her main problems are digestive.
We had no family history of CF. Courtney's case really stumped doctors, and her case has actually been used in major CF conventions for doctors.
Let me know if you have anymore questions!
Seana
Well, I'm not a parent, but I have CF. I was diagnosed at about the age of 3. I know when I was a baby, my mom said I would cry because I was hungry all the time. I ended up having a prolapsed rectum and my mom called the dr. I don't know all the in's and out's, but for some reason, the dr. suspected cf. All of us (me, my sister, and my brother) were all tested. I and my sister tested positive for CF. My brother was in the clear. I don't really know if I had any other symptoms (other than the prolapsed rectum and no weight gain). I don't think my sister had any symptoms (I think she was 7). Unfortunately, my mom passed away in 1997, so I can't ask her. I do remember the prolapsed rectum incident, but all the other stuff (getting tested, etc) I don't remember very well. Hope this helps a little bit.
My daughter was diagnosed at five weeks of age with cf due to failure to thrive. We did not have family history of the disease. Within a few of her diagnosis, three of my siblings each had at least one of their kids tested to make sure they also didn't have cf. My nephew, who was four at the time, ended up having cf as well. I remember thinking he was a small child, but looking back in pictures he did have some extra weight on him. His main symptom before his diagnosis was constipation. He had been seeing a pediatric GI doctor who specializes in cf for two years prior to his cf diagnosis. The pediatric GI doctor should have seen the signs and at least had him sweat tested. It never hurts to get a sweat test, especially when there is family history. I would talk to your family member's parents and encourage them to get him/her tested.
Sharon, mom of Sophia, 4 and Jack, 2 both with cf and aunt to Joseph, 8 with cf
Sharon, mom of Sophia, 4 and Jack, 2 both with cf and aunt to Joseph, 8 with cf
my son was dx at 6 yrs old, he had pnuemonia, it was propably my fault for letting his cold drag on and on. in hindsight he had foul smelling poops, incredibly we thought it was normal!!!!!!!!!!!!!!!! i would never have taken him to the drs. 'cos of bad smelling poos. apart from that no other symptoms.janet uk<img src="i/expressions/face-icon-small-smile.gif" border="0">
I am the one with CF & I was dx at 7 years old. In my younger years my issues were digestion. I was small, but not unhealthy looking nor extremely underweight. I did; however; get bad cramps & diahrea every time I ate. I had every allergy test I think that existed & when my Alllergist ran out of options, he referred us for the sweat test. Because my weight was ok, my lungs were ok & there was no family history......he didnt think of CF immediately. BUT in the meantime I went thru hell & my first 2 years of school were scarred by the problems......
Our son had rectal prolapse. This was only caused because he was
toilet training and, holding himself. I diagnosed him with the help
of the web. Other symptoms included salty skin and, bulky frequent
stools. No, chest infections. He was also a good weight (within the
top 95% for his age). <br>
<br>
<br>
toilet training and, holding himself. I diagnosed him with the help
of the web. Other symptoms included salty skin and, bulky frequent
stools. No, chest infections. He was also a good weight (within the
top 95% for his age). <br>
<br>
<br>