Cystic Fibrosis Forum (EXP)

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Recent content by Super Man's Mommy

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    Questions???

    Thank you all! Everyone in the house follows the rules! They understand and comply without complaint! It's those not living in the house but simply visiting! However one of the smokers is attempting to quit, I pray he does!!! Jenny C, it is just a matter of time until one comes to you so be...
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    Questions???

    My 22 month old was diagnosed with CRMS on Febuary 26, 2013. I was told this is CF, they call it CRMS until they identify the mutations. He has been screened for the first 39 mutations and now we are waiting on insurance approval for the full panel that will be sent to Ambry Genetics and a CT...
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    21 Month Old

    Our appointment with the Pulmonologist was this morning. For someone who was convinced the 1st sweat test was incorrect, he sure has had a change of heart! He has diagnosed Aiden with CFTR Syndrome, in the mean time the doctor is waiting on insurance approvals. He will then order a full...
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    21 Month Old

    So, my Little Super Man has been doing great the past two days... He is a totaly different child. Very weird, scary, and exciting all at the same time. He has NEVER gone TWO days in a row without coughing, wheezing, rattling, snot, ect! He has an appointment with the Pulmonologist on Tuesday...
  5. S

    21 Month Old

    I have come to the conclusion that I need an Army to take on the Doctors. Ugh!!!
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    21 Month Old

    More then anything I NEED/WANT a Diagnosis!!!! I need to know what is wrong so I may receive the correct care plan and move forward!!! PICC line is scheduled to be removed on the 14th because that will be 28 days of antibiotics and I must say I do not want it removed because I know he will be...
  7. S

    21 Month Old

    We have been scheduled for a ANOTHER SWEAT TEST on Thursday Febuary 21!!!!!!!! Lots of salt and fluid!!!!!! I would like to thank EVERYONE for your input, opinions, help, encouragement and kindness!!!! I am so greatfull!!!(L)
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    21 Month Old

    Bill Dr. Jason Fullmer.... He works out of Austin Childrens Chest Associates. It is affiliated with Dell Children's Hospital.
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    21 Month Old

    Printer, we are using Austin Childrens Chest Associates... Jenny C. looked up the Pulmonologist... He is a CF specialist and the clinic is CF approved.
  10. S

    21 Month Old

    Will that cause any problems with the testing, or just cause him to sweat more? I am sorry if that is a stupid question...
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    21 Month Old

    I am just beside myself. The nurse told me that the doctor said I should be satisfied!!!! Why should I be satisfied, I still do NOT have a proper diagnosis.... Geez!!!! I am told that we will re-do a sweat test, but we will not be doing further blood test! I don't even know what to say...
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    21 Month Old

    Jenny C and I were discussing body percentile earlier. I made a quick call to the pediatrician and this is what I have found.... I didn't want to edit my first post because I wanted to make sure you seen this... Any input is appreciated... 12Months weight 24 pounds 55.53% height 31 inches...
  13. S

    21 Month Old

    Something so important shouldn't take so long... This is horrible!
  14. S

    21 Month Old

    Jenny, I tried that the other night and again this morning. It tells me there is an error on that page, try again later....
  15. S

    21 Month Old

    Thank you, for your response... I will be speaking with the Pulmonologist on Wednesday when he returns to the office. I am not able to schedule an appointment until the 26th but they will have the first set of test results back before then. I am praying I hear something by Friday. Now, the...
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