Cystic Fibrosis Forum (EXP)

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  1. J

    Traveling with vest

    I agree with Beccamom. We have used the early boarding and have explained that we will not check it, and we have had no problems. As a matter of fact, we met the Panthers coach when he overheard my husband and then 8 year old son explain his vest. He let us take a picture with Justin and...
  2. J

    504 Plan Information in Private School

    Hi, My son was in a private school for k and 1st grade that was wonderful with us. I volunteered 3 days a week (elem ed degree) so I was there to oversee everything with him. I believe I was told (not from the school) that private schools do not have to comply with 504 requests. Not...
  3. J

    The type of bacteria growing in CF lungs correlates with how viscous the mucus is

    Printer has always been very kind to us. We are thankful for his input. Also, he is a model for my 9 year old that he is not sentenced to a shortened life.
  4. J

    Hyperinflated lungs?

    Thank you so much. I will ask about Spireva. It might be one of the drugs his CF doc said we might try in place of Symbicort. Didn't want to try too many changes at once. I also agree that it could be the staph. It seems that he has a "flair" of some sort about twice every three months...
  5. J

    Hyperinflated lungs?

    Hi, Follow up was with the CF Clinic. Not sure how much infection plays in Justin's cycle because he only cultures staph, h. influ all the time and once strep. May have viral infections on and off. We will be doing the pred bursts instead of the lower dose for longer. Yes, I am flexible to...
  6. J

    Hyperinflated lungs?

    Hi, We had our appointment on Friday. The discs for both x-rays got lost so the doctor did not get to see them. We got a new asthma plan, no qvair and no atrovent. He now gets singulair, prevacid, xopenex with saline and Pulmozyme and Singulair 160 twice a day. All things he was on, just...
  7. J

    Hyperinflated lungs?

    Our ped worked in a CF clinic for years and is the asthma specialist in the area. He is wonderful. Wants us to see the CF doctor about the possibility of it being from asthma and is also considering untreated infection. His PFT's were completely normal (on day 3 of steroids and antibiotic)...
  8. J

    Please take a minute and vote

    Done! Both voted for Oscar and posted to my Face Book wall and asked other to do the same. We are so proud of you both!!! A great dog and a wonderful boy!!!!
  9. J

    Hyperinflated lungs?

    No, no cultures yet. When we go next week. The ped mentioned possibly a habit cough. Could that cause the hyperinflation? He does not cough while he is sleeping but does cough the first ten minutes he lays down.
  10. J

    Hyperinflated lungs?

    Why Tobi? Was there some concern about psuedomonas? We have wondered about Justin because he did some much better after a round of cipro for his foot. Does that cause hyperinflation without fever? He is still coughing and says his chest hurts. His PFT's were great after a couple days of...
  11. J

    Hyperinflated lungs?

    Hi, I posted several posts this week about some concerns with my 9 year old son. Luckily, the horribly low PFT's was a fluke, the doctor confirmed the problem with the machine. That being said, he was started on anitbiotic and prednisone for increased cough and pain in the lower left abdomin...
  12. J

    PFT Drop Question

    Hi, I had Justin at the ped's yesterday. He has recently had an increase in non-productive cough and pain in his left lower abdomen (where he has had his pneumonia's in the past). He has had the pain since Friday (Sunday really bad) but seemed much better yesterday after school. I almost...
  13. J

    Pseudomonas question?

    Hi, I have a question for those who have children that have cultured psudomonas without many symptoms or only a non-productive cough. Could you please tell me more? My son Justin (9) has had some problem since last Feb. From Feb to June he had a drop in his small airways (25-75) from a high...
  14. J

    Bacterial intestinal overgrowth

    We have had 3 rounds of Flagyl since September. Now he is having terrible gas problems. His teacher spoke with us about it. Not sure what could be causing it. Waiting to hear from GI. He got out of bed and came to me last night to say the kitty should not have to sleep with him because he...
  15. J

    Need Advice! Nebulizer Mask to keep meds out of eyes?

    We are in the same boat. Justin just turned 9 but we still use the Bubbles mask. He wears glasses which makes it harder. I like the mask because it loosens up the nasal mucus too.
  16. J

    grunting sound?

    Kyeev, I think you may be right about the sinus drip. It must have laid there long enough because he woke up on Sunday with a really junky cough. Took him to the doctor yesterday and he is on oral steroids and antibiotic because of drops in his PFT's. Thanks for your thoughts.
  17. J

    grunting sound?

    My just turned 9 year old son has just started developing a cough with a grunting sound. He says he is not trying to clear his throat. He also has severe nausea (at least once a day) and tummy pain that are (we are assuming) from his bacterial overgrowth in his intestines. Does anyone have...
  18. J

    Gas Question

    I am so sorry to hear what your son. We (my 3rd grade son and I) live with it all the time. It is so difficult to figure out what is what. My prayers are with you and you have lots of support from Pennsylvania.
  19. J

    Bacterial intestinal overgrowth

    I will do that. Thanks again. You are always a reminded to him that "37" is just a number and that many people live long lives. You are in our prayers to continue a long life!
  20. J

    Bacterial intestinal overgrowth

    Bill, Thank you for the reply. He has been on a daily double dose of (was Miralax but now changed to latulose) since he has 6. We struggle with terrible constipation, nausea, bloating, the whole deal. He has since he was 6. His GI uses Flagyl for kids. Seems to think he will be on 10 days...
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