:bouncing: Im losing my mind! My son just turned 5 yrs old. He started having problems with chest infections about 1 and half years ago. He was diagnosed with asthma, and after a few months of albuet. and pulmicort he seemed to be fine. We went 6 months with no problems . Then it started again , this time he had phneumonia, and it was treated with antibiot. etc.
I thought he was fine, but then a runny nose in November has turned into now 52 days of strong antibiotics, Biaxin, then augmentin, advair, xeponex, nasonex. Allergy tests were done- no allergies. He has always been very pale, people make jokes about letting him get some sun. He has complaines about being tired a lot for about a year. Monday the asthma spec. said his chest sounded good and his breathing function had improved. Tuesday when I picked him up from school he was coughing and you could hear a lot of congestion? in his chest. I called her and she called him in prednisolone. So now he is taking all of these meds, his bowels have been water for the past week from the antibiotics, and he has NO appetite. P.S. His lung x-ray , I was told "LOOKS GOOD"- What is going on?????????? I also need to add- some of his stools have been pale almost greyish white, not all the time though, his weight is 40 lbs , I don't remember what they said he fell into on the percentile on his last check up, im checking on that. Does this sound like bad asthma? Am I being hypo to be wondering about cf?

:angel: Go ahead and insist the doctors test your child for cf and anything else that might cause symptoms. I went through the same thing with my child. When he was 5 wks to four months old he was hospitalized 3 times. Supposed to have bronchitus. Not to mention drs. visits every week in between. and constant antibiotics. I had a fit and made them test him (didn't know the first thing about cf then) to find out what was causing him to stay sick. It was the best thing I could do. He was diagnosed with cf, treatment was started and he got well. It's better to know so proper treatment can be given. Good luck!

Thank you for your reply- I picked him up from school yesterday and again- he said he was tired and just looked like he couldn't get a good breath. So-- I called the asthma spec. and her staff acted so annoyed and told me they would see him if I got him there in less than 20 mins. So I told them forget it , I would take him to my pediatrician. They checked his oxygen, it was great! 99%. Also, his chest sounded great. :confused: They said the congestion I was hearing was coming from his sinus, and that the steroids had everything broke up. We are sched. to go back to the spec on March 21, she wants to recheck sinuses, and see if they are causing the prob. But I can't stand the staff. Did your child go through periods where everything in her chest was clear? Also, my son has a huge belly and really skinny on his arms and legs. She told me that was ok, if it was malnutrition or something his stomach would be very tight to the touch. He has never been hospitalized for asthma, but I have had to take him to the Emergency Room several times.
Again- did your child have periods of chest being really clear? Does she have sinus problems? He has had bad breath for years, no matter how much I brushed his teeth, and they have finally told me it was the sinuses. Sharon

I'd ask about seeing a pediatric pulmonologist. DS has CF and his lungs have always been clear. I took him in last winter 'cuz he was wheezing. Just to a regular peds doc and they acted like I was being silly -- got the it's just a virus. Luckily he got over it, but when I asked his specialist a few weeks later he said that a lot of times regular doctors don't know what to listen for and if it happens again -- increase our breathing and cpt treatments.

Sometimes with CF patients the disease manifests in different ways. I know one person who only has sinus problems. My son's are mostly digestive. He requires enzymes to digest his food or they're loose and smelly -- they smell like feta cheese. He also has a little pot belly which makes fitting him with pants somewhat of a challenge. Hopefully he'll outgrow it.

I too think it is absurd to not test for CF just because one's lungs "sound clear." My child w/ CF has lungs that "sound clear" most of the time. She has a round belly too.

My DS, at 5 months, lungs sounded "fine", "nothing in the chest"-- I heard the same thing 5 times in 2 weeks- come to find out he had pnuemonia, which led to our CF diagnosis. He has mostly digestive issues now- which a feeding tube & enzymes are working to correct. Not to scare you, but my little guy has skinny arms & a round belly, too. Now at 2, his lungs are always clear, oxygen always 99-100, xrays- terrific.

Please just get a sweat test for CF- its painless & you'll find out that day. Then you can either treat it, or find out what else is going on.

Thank you all so much for your feedback!!!!! I swear sometimes I have to ask myself am I just losing my mind, but my gut instinct tells me he is just not right, he complains so much of being tired even when he's trying to play. I appreciate the feedback so much. Now I need to fiqure out the doctor Im going to ask to do this sweat test :rolleyes: .I will ask about seeing a pulmo.
Also- thank you for telling me your childrens chest has been clear, I just about wanted to fall out on the floor after seeing him feel so bad, and then to hear the doctor say" he sounds great!" . Which I don't want his chest to be congested, but I know something is going on!- Sharon

Hello Sharon, my name is Christina Williams. I am an upcomming actor/singer. My management team is currently putting together a reality show evolving around CF. I am 20 years old and was totally oblivious to what this disease was, until tonight. I got on the internet and educated myself and am shocked at how many young children suffer from this illness.

I just want you to know that God has his hand over your child's situation. I know in many cases it's hard to fight through the battle and easy to get discouraged. But you are strong. You beared a child who too is extremely strong. And each day that God breathes breath into his lungs is another day to be excited, joyus, thankful and happy about. God will give you nothing that you can not handle, besides we are all here for HIM anyway. I just want you to know that i will be praying for you and your son, and your/his situation, and IT WILL BE OKAY! Please have faith! Please don't give up! you'll be in my prayers.
Christina

:bouncing: Im losing my mind! My son just turned 5 yrs old. He started having problems with chest infections about 1 and half years ago. He was diagnosed with asthma, and after a few months of albuet. and pulmicort he seemed to be fine. We went 6 months with no problems . Then it started again , this time he had phneumonia, and it was treated with antibiot. etc.
I thought he was fine, but then a runny nose in November has turned into now 52 days of strong antibiotics, Biaxin, then augmentin, advair, xeponex, nasonex. Allergy tests were done- no allergies. He has always been very pale, people make jokes about letting him get some sun. He has complaines about being tired a lot for about a year. Monday the asthma spec. said his chest sounded good and his breathing function had improved. Tuesday when I picked him up from school he was coughing and you could hear a lot of congestion? in his chest. I called her and she called him in prednisolone. So now he is taking all of these meds, his bowels have been water for the past week from the antibiotics, and he has NO appetite. P.S. His lung x-ray , I was told "LOOKS GOOD"- What is going on?????????? I also need to add- some of his stools have been pale almost greyish white, not all the time though, his weight is 40 lbs , I don't remember what they said he fell into on the percentile on his last check up, im checking on that. Does this sound like bad asthma? Am I being hypo to be wondering about cf?
:angel: :angel:

:wave: Thank You Christina for your sweet response. It is so frusterating to deal with the pediatric group we have, there is only about 4 out of the 10 pediatricians in our group that are worth anything. I have to beg them to look at my son, one of them did sched the sweat test for April 5. BUT......
the same doctor ordered a cbc never heard anything back on it. He started looking terrible, even the teachers at his school noticed . So here we go back to the ped. 5 days later. They noticed his lymphs were swollen said it was prob. viral. I begged him to look back at the bloodwork the other ped had just ordered. He looks in the computer and smugly says- "well, he is anemic".
HELLLLLLLLLLLLLOOOOOOOOO?! It starts to feel like this is a nightmare!!!!!!!
He would not have even known that had I not begggggggged him to look :confused: . His asthma specialist has stepped up to plate and is also doing a CT scan on April 4. She has promised she will take over and see him every 2 weeks until we find out what's going on. Again- thanks for your response. Sharon

Just keep after those doctors to find out what's going on with your child. We go to a local nonacreditted CF clinic in town and an accreddited one in the City and the local doctors drive me nuts. They're a little behind in the latest treatment options or don't recommend ones because of the money factor. We don't get lab results -- we're just supposed to take their word for it that culture results are fine, then we find out months afterwards that there's a problem.

When DS was hospitalized time and time again I was treated by the nurses as if I was making up DS's symptoms or that we were just too much trouble with the alarms on the ivs would go off. We've just learned to take charge of DS's healthcare and go with our gut feelings. I just hate how sometimes we're treated like idiots and/or difficult patients (parents).

Good for you! You just about have to do it yourself is what Im realizing! You think your pediatricians are supposed to be the people you trust with your children. A lot of them are, but the doctor I had to beg to review my sons bloodwork actually said to me "Don't wish your child sick"!!! :eek: . I wanted to fall out right there on the spot! As if I was making up: bacterial lung infections, constipation, weakness, fatigue. I had been telling them for the past 4 mths that he was so tired all the time, they had bloodwork showing his iron low and didn't even bother to look at it. That's why I can't help but wonder if this is just a bad dream!!?? Sharon

Hi. I have a five year old daughter with CF. I have learned that you have to do a lot of research yourself and go with your gut instincts...no matter what you are told by your physician...A mother is with her child 24/7, whereas, a physician sees a patient for 10 - 15 minutes and sometimes makes a hasty assessment...I was told when my daughter was 6 months old that "she just had a cold". The doctor almost laughed when I wanted her tested for CF. I apologetically said, "Perhaps I am a paranoid mother, but I would like to have her tested anyway". Danielle presented with all of the classic symptoms: failure to thrive, salty-tasting skin, persistent cough, anemic...Many physicians ignore nutrition altogether...The fact that she had so many greasy stools and was severely anemic due to malabsorption should have been big clues. Physicians do not always try to get to the root of the problem....They prescribe medication to treat the symptoms instead of determining the underlying cause....
Diane

Yes! Exactly! My son's sweat test has come back normal it was a 30. So now I'm really clueless. I hate to jump from message board to message board but I guess Im going to check out some other ones. He is still anemic, his lymph nodes are swollen and he is showing positive to the epstein barr virus .His monocytes are elevated? Which could also be from mono. but they said he would have had it over 2 months ago. Im confused!!!!!!!!!!!!!!!!!! :confused: