Hello, My son just did his sweat test yesterday and it came back borderline. His doctor was comfortable saying he has a mild case, so I am now waiting on the DNA test for conformation/gene mutation.
At this point his issues are gastro. He has lived with chronic constipation (he is nearly 7) and is very small for his age. I am going to have him seen by a gastro so that we can hopefully get his absorbing more nutrients and get him off of his plateu of no weight or hight gaining.
What else should I be pushing for or watching out for?
Best groups on CM: Army Wives Natural Birthing Military Mamas
Welcome to the group mama:) I remember you from the Raising Special Needs Kids group...I'm one of the group mods, and my 3 year old has CF.
Are you having him seen at a CF Center? That's your first step to be honest. They will show you where to go from here...get him meds for digestion, breathing treatments, etc.
What has the doctor said about meds and such? Anything yet or are you waiting for DNA test to come back?
Feel free to PM with any questions:) This group is VERY inactive as CF is SO rare, and no one is ever in this group to be honest.
Good to hear from you! Hope things go well and PLEASE don't hesitate to PM me if you need someone to talk to...I don't mind!
Quoting airadan:
Thanks! We are waiting on dna, hopefully it will be this week. We hadn't discussed treatment yet, but we are trying to get him into gastro. His symptoms are very mild so I assume they aren't rushing due to that.
I really have no advice, but I am interested in knowing what the mutations are when you find out. My daughter has tested borderline twice on the sweat test, she is almost 3. One of her mutations isn't as severe and not the common one. They said she could start having problems at any time so we have to monitor her close to know if and when treatment is needed. They seem to be certain that by the time she is a young adult she will have some kind of problems, just nothing overly severe.
Quoting darbyakeep45:Welcome to the group mama:) I remember you from the Raising Special Needs Kids group...I'm one of the group mods, and my 3 year old has CF.
Are you having him seen at a CF Center? That's your first step to be honest. They will show you where to go from here...get him meds for digestion, breathing treatments, etc.
What has the doctor said about meds and such? Anything yet or are you waiting for DNA test to come back?
Feel free to PM with any questions:) This group is VERY inactive as CF is SO rare, and no one is ever in this group to be honest.
I totally agree with darbyakeep45. Make sure you are having him seen at an accredited CF center. Once you are there, they will guide you. With my son, they put him on enzymes as soon as they thought that he had cf (before the sweat test had even been given).
This group is very inactive, sadly. If you want to message me, please feel free to do so. My son is 7 months old and has cf. He was diagnosed shortly after birth, so we have already become accustomed to our daily regimen.
Best of luck.
I wish this group was more active...CF is just such a tough disease to deal with that the more support we can get, the better!
Quoting nickelzander:
Quoting darbyakeep45:Welcome to the group mama:) I remember you from the Raising Special Needs Kids group...I'm one of the group mods, and my 3 year old has CF.
Are you having him seen at a CF Center? That's your first step to be honest. They will show you where to go from here...get him meds for digestion, breathing treatments, etc.
What has the doctor said about meds and such? Anything yet or are you waiting for DNA test to come back?
Feel free to PM with any questions:) This group is VERY inactive as CF is SO rare, and no one is ever in this group to be honest.
I totally agree with darbyakeep45. Make sure you are having him seen at an accredited CF center. Once you are there, they will guide you. With my son, they put him on enzymes as soon as they thought that he had cf (before the sweat test had even been given).
This group is very inactive, sadly. If you want to message me, please feel free to do so. My son is 7 months old and has cf. He was diagnosed shortly after birth, so we have already become accustomed to our daily regimen.
Best of luck.
The trouble is that doctors can be fabulous, but still not have any experience with cf. There are only 30,000 people with cf in th US, which means that cf is not something that other doctors are dealing with regularly. I would search for cf centers in your area, check your local children's hospital. Once you get in touch with them, they will help you get referrals and work through anything else. We go to the children's hospital in Philadelphia and they are fabulous. Every patient has a social worker assigned to them, who is dedicated to helping you work through insurance issues, etc.
www.cff.org has a list of ALL the accredited CF Centers in the US!
Sweat Test
- airadan
on Feb. 10, 2012 at 4:19 PM