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Cystic Fibrosis
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Posted 7/8/2006 9:27 AM (GMT -8)
  Hi everyone,

  I just joined this forum to find help on behalf of my friend who resides in prince edward Island.  Her son is three years old and currently lying in a hospital bed as we speak with his organs shutting down.  He has shown the signs and symptoms since he was born and his doctor has neglected proper treatment by saying he is fine.  Just by looking at him you can see without a doubt that he has it.  He looks to be the size of a one year old and is three and is extremely thin.  My friend is only 20 years old and has no one to turn to.  Her mother passed away five years ago and she is by herself trying to cope with her situation.  I would love to be there but I am from ontario and just found out this morning of her sons condition.  He has not been treated for this condition for his doctor said nothing is wrong with him. 

She was told this morning that he definatly has the condition but it seems like there is no one on the island that knows everything about this condition.

  I called macmaster hospital and they told me at information to wait until monday and pick up a phamplet at a local clinic.  A PHAMPHLET!!!!!!!!!!  This child is dying!  I need to find her help and I have been calling numbers upon numbers and nothing.  He doesnt have alot of time, especially to sit in a hospital for testing when there are doctors out there who know what to do.  Does anyone on here know where I can get information???  I would really appreciate it and I know my friend would as well.

Posted 7/8/2006 11:50 AM (GMT -8)
I'm not sure if I can help you with this. I'm from Manitoba. Has her son had a sweat test or DNA test? Does the mother know for sure that this is CF? If so, then she needs to get a referral to an accredited CF clinic. In doing some research, I don't think there are any CF clinics in PEI, but there are some in Nova Scotia, Newfoundland and New Brunswick. She may have to travel, I do know of some that have to travel to clinic. Here is a list of Paediatric clinics:

SAINT JOHN REGIONAL HOSPITAL (Paediatric/Adult)
P.O. Box 2100
Saint John, NB E2L 4L2
Nurse Coordinator: Rita Stackhouse
Clinic: (506) 648-6057

JANEWAY CHILDREN'S HEALTH & REHABILITATION CENTRE
300 Prince Philip Drive
St. John's, NL A1B 3V6
Nurse Coordinator: Elizabeth Sheppard
Clinic: (709) 777-4389

IWK HEALTH CENTRE (Paediatric)
5850 University Avenue
Halifax, NS B3J 3G9
Nurse Coordinator: Paula Barrett
Clinic: (902) 470-8219

At this point all I can say (and I know its of no help to you), but he needs to have a CF test done before he will be seen at a CF clinic. All I can say is get your friend to keep pushing for a test done.
Posted 7/8/2006 5:12 PM (GMT -8)
Hi Chantelly. I know that you had mentioned that he has shown signs and symptoms and he looks to be the size of a one year old. The first thing that I would recommend is getting her son on enzymes. Cystic Fibrosis has a lot to do not only with the lungs but the digestive system. He might not be getting the proper nutrients to gain wieght. That is where the enzymes come in, the enzymes(pills) help to absorb nutrients and digest food properly. As for probelms with his lungs, pysiothearapy or cupping of the hands in a pounding motion to the chest works well to get up thick secretions that are in the lungs. I wish I could help more. If you have any questions put them on the message board and I'm sure someone will get back to you. Hope this helps.
Posted 7/9/2006 4:52 AM (GMT -8)

Hello Chantelly and welcome to HW!

Sounds like your friend really needs a support system and you are doing all you can.

Really good information and advice from Chaser and Vestgirl.

I hope the little boy gets the right treatment and is on his way to recovery.  Keep us posted.

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