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Cystic Fibrosis Message Board


Cystic Fibrosis Board Index


I commend your determination in not letting things wait- somehow that seems to be acceptable in the medical community, but not to a Mother concerned with her childs health. I had to beg my ped. for a sweat test after my 5 month old with pnuemonia started losing weight. I diagnosed him myself by reading on the internet the symptoms of CF. He finally scheduled a test for 1 month later- so I called the lab myself and was in the next day & got our positive result by noon.

I remember the feelings of total devastation, I kept saying "my sons gonna die", I cried and cried- it fealt like my heart had been ripped out. But I promise you -PROMISE- that this despair will not hurt so bad in a few weeks, and even less in a few months. Once your child gets on the proper medication, and you learn PT, life will improve. My son is now 16 months old and besides some extra work each day- he's a normal fiesty little toddler.

Please know that this is not a death sentence- they'vecome a long way, check Boomer Esiason's website- get on his mailing list at [url]www.esiason.org-[/url] you'll get daily emails with updates on all the new meds & treatments & research-- its very comforting.

While I pray that the test is negative- know that there is lots of support here and you are not alone



[QUOTE=sassyNoz]I have been crying non-stop for 3 days not eating no sleeping. My 4th child a perfect baby girl is 11 weeks old. Well she was hospitalized at 7 week for gastoitus also again ant 10 weeks for the same thing. Between those vistits whe was in for RSV at 9 week. The drs chalked it up to her being a little early 3 weeks and just being born at a boad time of yr. Anyway last week before she was released the dr said she did want to run a CF sweat test before we left just to rule it although she was 99% sure it was neg. Ok we were told the nurses would be given the results within 30 minutes and they would tell us. Well about a hour later they guy who ran her test showed up at the nurses station and called our ped himself. Later I asked the nurse she was puzzled that no one did give her the results so she called the dr. The dr said that only she would be able to give us the results and to tranfer her to our room. So when the phone rings and its the dr not a nurse on the other end its scarey.... anyway the dr said..... I want us to just pretend like we never did the test and do it again in a month , she (my dd) was sick and pumped with saline water ect.... and the baby is low weight )9lbs) so we aren't sure that we got a good reading therefore we will do it again in a month but I want ot see her everymonth in the mean time....... I'm like ok so your saying tyou got no reading? The dr says oh yes we did but it was boarderline I said which is??? she said 62. She then said don't worry we I'm still 99 % sure its ok we will retest. SO this was friday sat I looked up info on the internet only to find that 62 is NOT boarder line it is pos...so I went all weekend in a panic. I called my ped this morning hoping I got the wrong # from her this time the nurse talks to me saying well we did get a positive reading but because of everyhting else we want to retest before we confirm it. I'm like there is no-way I can wait a month I will take her out of town for testing if they want (we live in a very small town) anyway she said she would talk with dr and call back. In the mean time I found ONE dr in the ENTIRE state that treats kids with CF I figured I would go there for retesting no matter what the dr said. I also called my OB to see who they recommend for gentic couseling (since we both have to be carriers) my OB said come right in he would talk to us and explain CF a bit and test us himself the results will take 5 days, no sooner do I leave the office and my cell phone rings it was the peds nurse saying that the dr agreed with us 100% and she would probably do the same thing in demanding a sooner test but she wanted us to see specialist and let them run the test since they know more what they are doing. Well I had allready found a pulmanoligist (sp) the only one in our state that treat kids with CF and made a appointment for late March although I hadn't told the dr that. Then the nurse proceeds to tell me that there was a very good dr the only one who ttreats kids,,,,,,and the nurse called and while she was talking to them a cancelation came through for TOMORROW. The nurse took the appointment and said that never happens it must be meant to be. Its funny because that was the same dr I allready had a late March appt with of course this is much better than waiting a month. SO tomorrow is the day does anyone knowwhat to expect the first visit will they retest her then (I so hope so) also a few people have asked me what is she being tested for when I say CF they always say I'm so sorry one friend even said// " you do know thats a death sentence right" NO its not god why did she say that. I am so scarred for tomorrow. I might add she doesnot have the cronic cough she does have a hard time gaining weight and foul bowels but thats it. sorry this is so long its took forever to find a message board for CF and any advice would help so much!!![/QUOTE]





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