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  1. J

    Vote For Me for Rare Diseases Art Contest!

    Your drawing is incredible. I just voted and shared on my FB page. I hope you win, good luck.
  2. J

    Now that summer is here

    Hey, thanks for the reply. I'm hoping this improves as summer wears on. He is not due back at clinic until the end of July, but if this continues I'm going to atleast make them aware of it. Thanks again
  3. J

    Now that summer is here

    Hi guys, quick question. Any of you or your children become extremely exhausted after spending an afternoon outside when it's warm? My son seems to get this way after we come in and it continues the entire next day with tiredness and even bloodshot eyes. He isn't even doing anything active...
  4. J

    Mucus in urine

    Thank you everyone for the replies. I did put a call into gi doc and have heard nothing back so I am taking it as it isn't anything too worrisome. If I get any further feedback, I'll let you know.
  5. J

    NEW Relizorb enzymes (for those with G-tubes)

    I am so glad it's working for you. My son tried them about 6 months ago, and unfortunately they did not help. Our clinic has said they are seeing about a 50/50 chance with patients. Half it is helping and half it isn't. They did say for the ones it is helping they are seeing amazing...
  6. J

    Mucus in urine

    Bill thank you so much for replying, I appreciate your knowledge. My son actually had a cf appt. today, which I actually forgot about. He had had so much going on lately so I'm glad they call with reminders. I did ask his cf doc and he said he has never heard of mucus in the urine and had no...
  7. J

    Mucus in urine

    Ratatosk, thanks for replying. i thought uti or bladder infection, but there was no bacteria found.
  8. J

    Mucus in urine

    Hi guys. I feel like I've had a lot of questions lately, but you guys are always so helpful, so here goes. My son has been having recurring vomiting and diarrhea for the last year, but has gotten worse the last 6 months. His gi says its cyclic vomiting syndrome and he will be starting yet...
  9. J

    Recurring gi symptoms.

    Thank you. I will def bring up to doc on Wednesday. I appreciate the reply, and hope you had a nice Mother's Day.
  10. J

    Recurring gi symptoms.

    Yea he does culture that in all his throat cultures. Never thought of that.
  11. J

    Recurring gi symptoms.

    This probably isn't cf related, but what do I know, lol. Since December my son has had 5 bouts of diarrhea, vomiting, and stomach pain. I'm just having a hard time believing this is another stomach virus. Every episode has been the same. He wakes up through the night like around 4 am with...
  12. J

    Contest

    Oh, thank you so much, but he did participate with make a wish a few years ago. It was an amazing experience and we were so grateful for their generosity. It was something we will never forget.
  13. J

    Contest

    Hi guys. Hope it's ok to post this here. If not I'll take it down. I am trying to win a meet and greet with the band Linkin Park for my son Jacob who has cf and also autism. He loves music and this is his favorite band. He wants to get his guitar signed. If any of you could take a...
  14. J

    Dios

    Thank you. I thought it was just seen in cf. just wanted to be sure.
  15. J

    Dios

    Hey guys, just a quick question. Is distal intestional obstruction syndrome, (DIOS), seen only in people with cf? Thank you so much.
  16. J

    Increased cough

    I am definetly going to look into the personal steamer. I think that would be something he would be willing to try. Thanks for the suggestion. On a good note his pft's are up. Not to his baseline, but up from prior to starting the Tobi. I guess Tobi did the trick. 28 day on/off schedule...
  17. J

    Increased cough

    Oh there is no way we could do a sinus rinse with him without needing to be hold him down. The kid is so tiny, 80 lbs but has a strength beyond belief when he is afraid or doesn't want to do something. I bet they would be helpful, but are unfortunately impossible. He does seem to be improving...
  18. J

    Increased cough

    Yes. He had been doing 3-4 vest treatments a day with 4 albuterol treatments on top of regular Meds and now Tobi 2 x day. He finished another round of antibiotics just a little over a week ago. He isn't sick, just can't rid this congestion tests in his nose and I guess still some in his...
  19. J

    Increased cough

    Hey ToriMom. Thank you so much for asking. He has had an upper respitory thing going on for about a week. Today he started coughing up (sorry gross), thick gray, brown mucus. Not sure what that's about, but assuming Tobi is doing its job now. He goes for a repeat pft on Thursday, so...
  20. J

    Mycobacterium Abscessus

    So sorry to hear this, your daughter and you are in my prayers. God bless you both.stay strong.
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