Cystic Fibrosis Forum (EXP)

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  1. I

    Dont know why I do not recieve any emails

    I am confused as to what the problem is. Are you trying to make another user name? All of your profile credentials that I can see say you're from PA... etc...
  2. I

    PFT Goal's thread. Trying to achieve 60% FEV1.

    Clinic today!!! Yeah Boiiiii!!!!!!!!!!
  3. I

    Really scared...

    To the OP, it has been brought to my attention that your child has been already hospitalized 5 times by 3 months of age? Is this true? If you don't tell us the whole story we CAN NOT help you.
  4. I

    Really scared...

    I understand where you are coming from, trust me I do. However what you just said is much better than sarcasm. That was my gripe. I am not going to edit anything you just wrote because there is no sarcasm. I do think that there are better ways than to tell someone all the bad they're doing. If...
  5. I

    Really scared...

    @kitomd21 Your negative sarcasm will not be tolerated. I would prefer not seeing it again. This IS a warning. You are bashing someone who, 1. Admits they have a problem. 2. Is asking for help. Which you advised what you would do and that's fine. But the latter comments are not constructive...
  6. I

    Really scared...

    <div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Colsophnel</b></i> Yeah he is. He's a rambunctious kid.</end quote> A good sign would be to worry when he is not. Activity is key in young children with CF. If you do anything make sure to keep him active. I also second seeing a...
  7. I

    Really scared...

    Is he pretty active for 17 months old?
  8. I

    Really scared...

    If it was me, (I am NOT a doctor) I would give him the albuterol and Pulmozyme. Skip on the Pulmicort. There is a lot of research suggestion cortisteroids in CF are useless and leave us more prone to infections. Especially if they can't tell. In theory the MSW (Medical Social worker) has the...
  9. I

    Really scared...

    Hmmm this is tricky. Especially because he's so young. I know social workers can go NUTS and do a lot of damage if you aren't careful. I've seen it first hand. I am inclined to say if they can't tell the difference than keep doing what you're doing. What is the prescribed treatment regime that...
  10. I

    Really scared...

    Are you working with an approved CF center? What are the doctors saying? Do they know he hasn't gotten a treatment in a year? I wan't diagnosed until I was 7 almost 8. It probably wouldn't have made much difference if I had been diagnosed at birth. I didn't really have any problems until I was...
  11. I

    Asking People to Visit?

    <div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Havoc</b></i> Yeah I hear the boredom thing. I hate TV, so that isn't even an option for me most of the time. Sometimes you'll get a cool nurse or CNA that will sit down and chat for a bit. I usually take books and stuff and my laptop...
  12. I

    Medicaid / VEST

    Medicaid in PA has paid for two Vests for me.
  13. I

    Alternative treatments for MRSA

    I sent Dramamama your phone number. If she calls you that is upto her. Please do not post your number on the open internet. - Forum Administrator.
  14. I

    Alternative treatments for MRSA

    Please do not post your phone number on the boards. I will Send Dramamama your number. -Forum Administrator.
  15. I

    PFT Goal's thread. Trying to achieve 60% FEV1.

    Appointment is on this coming Monday if anyone wants to guess at my FEV1.
  16. I

    CF related Sunburns? (Not caused by antibiotics)

    My mutation from what I can find is from ethnicity closer to the equator. I know for a fact I am part Native American Indian (possibly at least 1/4). Needless to say - I don't burn. I tan to a nice golden brown. Bactrim only makes this happen faster for me.
  17. I

    ADHD

    It is possible... I'm drawing REALLY loose assumptions. That the deficit of S-Adensosylmethionine (SAMe) and Phosphotidylcholine may play a role in ADD/ADHD in the CF population. <a href="http://www.ncbi.nlm.nih.gov/pubmed/15755840" target="_blank">http://www.ncbi.nlm.nih.gov/pubmed/15755840</a>
  18. I

    Question about email I got from cysticfibrosis.com

    We are measure the interest of the Cystic Fibrosis community to see who is interested in them who has them etc... The Survey was sent to everyone who subscribes to our email listing. I do agree the timing is a coincidence and nothing more. <img src="i/expressions/face-icon-small-smile.gif"...
  19. I

    Anyone with DF508 and M1101R?

    <div class="FTQUOTE"><begin quote><i>Originally posted by: <b>LittleLab4CF</b></i>. Kalydeco is a crack in the wall. I firmly believe in most Cfers lifetime, a design specific drug family will treat all combinations of CFTR mutations ideally without side effects. My last patent automated gene...
  20. I

    Chef4Cf.com

    <a href="http://www.chef4cf.com/">http://www.chef4cf.com/</a> Pretty good site has some nice ideas.<a href="http://www.chef4cf.com/"></a>
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