My son had two sweat tests last week both of which were 41/borderline. We are waiting for the results of his genetic testing because he was adopted. I would like to know if his low number of 41/borderline has anything to do with the severity of his disease?
Also he has had respiratory and gi symptoms since early infancy and he's two years and eight months old-
Do you think a couple of years without treatment will jeopardize his ability to get better with enzymes, percussion etc.? We won't get the genetic testing results for three more weeks so any answers to one or both of these questions would be appreciated.

Thanks for your help.

Hi, I don't know if I can be of any help but can raise a few questions and offer my experience. My youngest daughter was borderline too but they were able to match her up against her older sister who was diagnosed at age 3, in fact just one week before my youngest was born. Based on the genetec testing they said they were 99% sure she had CF too. So they started her on enzymes right then. Now my oldest had no symptoms at all until about two or so months before our youngest was born. So, we have one that didn't get enzymes for three years and one that started them at just a few days old. As far as the lungs go, she did not start having any problems for another 5 years, one hospitalization and then not another one for another 3. As for our youngest she started treatment from birth but breathing treatments didn't start regularly until just last year,(she's 12 now). I think it's just the difference in the progression for my two. Here's a question if you haven't asked it already. If your son already has GI and respiratory problems, is he seeing a pulmonologist and/or a GI doc? Does he have malabsorbtion or failure to thrive? If so, can the GI doc. put him on some enzymes? If he is seeing a pulmonologist or I guess even a family practice or pediatician, ask if he might benefit from regular albuterol treatment and if percussion would do any harm while you wait the next couple of weeks. I don't know if you already brought up these questions with your sons doctor but it's a suggestion if you haven't thought of it. A couple of the ways to tell if there is or might be a malabsorbtion problem is fatty or greasy stools, really exceptionally smelly, a bloated or extended belly, perhaps even an aversion to certain fatty foods. Our oldest had the extended tummy (could've been a clue).To this day she has a hard time gaining weight(she's 15 now). Was it due to lack of enzymes for three years? We don't know, put most would probably say "yes". As for my youngest, she was tested three times before the age of 2, all borderline, they/we didn't think to test her again until last year, she's 12 now. I hope I've been of some help, if only thoughts to ask your sons doctor. Much luck

Hi Chacha. Thanks so much for your reply. We go to a new GI specialist this Thursday. After I'm sure they will send us to a pulmonologist. I'm actually terrified because my son has had symptoms since the first month. Does this mean his disease has progressed more? as opposed to someone whose symptoms appeared at age 5? Our son is also adopted and we don't know much about his birthfather. I'm just terribly afraid that his disease has progressed so much that it would be hard to help him.
By the way, his stools have always been greasy and really smelly. Does your daughter have anemia also?
My son has had this for years despite iron treatments.

Look forward to hearing from you.
Susan

CF is progressive, but for it to be so progressive that a small child would be untreatable? Not likely.

If you're really-truly worried, get your pulmonologist, GP, or friendly neighborhood respiratory therapist to teach you how to do chest physio, since if it's done right, it likely won't do any harm.

Hi Susan, My daughter doesn't have anemia. There have been times when I wondered. I don't believe that there could be a progression beyond help. I certainly can understand your fear though. You just want to know so that you can help him. I'm glad that you will be seeing a new GI specialist. I surely hope he/she can be of some help. I know that not just CF patients use enzymes so perhaps he/she can at least get his GI problems under control. With the respiratory problems he has had did he ever see a pulmonologist or just his pediatrician? We are military so I don't know how things work in the civilian world when it comes to seeing a specialist. When my daughter was diagnosed it was really just by chance. Like I mentioned before, she had no real symptoms to speak of, nothing to ring an alarm to the pediatrician anyway. They once thought they heard a wheeze but then dismissed it. What did it was a recurrance of rectal prolapse over about a two month period. Her doctor said, "I don't think that it's CF but lets just cover all the bases because that is one of the signs". When the results came back he couldn't believe it so he sent her to another hospital to have the test redone, they were the same. I don't know, I just would think that if a child is having constant respiratory problems that they would refer them to a pulmonologist. But I am sure you have had those same thoughts. Do you or have you ever looked at his x-rays? Again, another thing I'm not sure civilian docs. do. We have always seen our kids x-rays. If it does turn out that your son has CF, it's a good habit, I think, to get into. Having them tell you what they see, what's what, and getting used to what they look like so when you see them again, and again, you too learn to see the differences. Please let me/us know how your sons appt. goes this week. How is he doing right now? I hope well with no infections.
ChaCha

Hi Chacha,
We liked the GI doctor last week. He didn't think my son has cf because he's only a little under 50% growth etc.(that's his entire reason) He used to be around 15 however, I know there are some children with cf who get to average stature. Needless to say, he got our hopes up but I'm afraid they could be shattered easily.I'm sure you know the weight of the genetic information is what's making it so difficult.

My son also has strepp and is unfortunately on another antibiotic. Did your kids get bad diarrhea from the antibiotics? My son does. Also were your kids ever on neocate/protein powder and adek/vitamin?
So we're waiting and waiting. How are you guys doing?
Is your husband very helpful mentally and logistically with going to doctors' etc? Also are you in a support group? If so, does it help you? Do you have supportive friends? I look forward to hearing from you. Be well.
Susan

Hi Susan, glad to hear that things seemed to go well with the new GI doc. Both my girls are on ADEK but have never been on anything else you mentioned. I'm sitting here trying to remember which one it was that got really bad diarhea on Augmentin. I think it was the older one, which ever it was it was BAD. I'm talking not even being able to make it through a short grocery trip without it spilling out and over. It must have been the older one because I remember trying my best to stay clear from that particular antibiotic after that. It's OK now that they are older and can take the pill form. I think she got it for her ear infections. Anyway, it's not pleasant but it can happen to any child really.Well I'm sure you are somewhat releaved to hear the doctor say that he didn't think your son has CF. Not too much longer now to get those genetic testing results back. Right? I hope it all comes out well. We are doing well. My oldest daughter made her wish from the Make a Wish foundation and we were whisked away to the Rolling Stones concert in Phoenix last week. She was in heaven. Not to mention her getting to meet up with an old friend from when we lived there. She has a check up next week. We always get nervous when one comes around, even when she seems to be doing good. My husband is a rock, very suportive. His bosses have always been great about giving him time off when our daughter is in the hospital. She's high maintenance when she's in there. She doesn't eat any hospital food. He doesn't go to many doctors appointments but will when I ask him. His work is just so good about letting him leave when he needs to that I don't ask too often. I don't belong to any support groups. I'm a stay at home mom and since my kids are in JHS and HS I don't spend time at their schools anymore. Our close friends have been great. We were stationed in Europe recently and our oldest got to experience some real independence from us. Our good friend and Family Practice doc. went as a chaperone on a week long school trip to Crete(her son was in the same class). So our daughter got some independence and we got peace of mind. One of our other friends was going to go on a different school trip with our daughter but our doc went on that one too. But you know it takes time to make those kinds of friendships and usually by the time we get close to someone it's time for one of us to move. This last assignement has been a difficult one which is why I started looking on-line. At our last hospital the kids weren't allowed to socialize, in fact they had to wear masks and a gown when they left their room. They weren't allowed in the play room or computer room. My kids hated it. But I have to admit they along with other CF kids cheated now and then. They wore their masks and talked in the hall and sometimes went to each others rooms for a few minutes. They finally did away with the robes but made them keep the masks. I got a chance to meet a couple of moms then but only keep in contact with one. Here they are much better. Well I'm sure I've drug this on and I don't know if this forum objects to small talk. But that's kinda what I'm looking for, support and friendship with other CF parents. Sometimes it gets tough. So how about you (and your husband)? With your son having been sick so often it seems, are your friends supportive do you have family close by? I think things are easier to deal with when you have your famiy nearby. That is so what I'm looking forward to when we retire from the AF. Well thanks for the chance to chit chat. Hope your son gets over that strep quick and that things keep looking up.
Cha Cha

Chacha.....I too have a child with CF. What a small world we live in. I am in the Air Force living in Bellevue NE.

You are not kidding about that small world. We too are military, just arrived last July. Nice to meet you. How old is your child? How are things for you at the pharmacy getting meds? My daughters are both on Pancrease MT16 and Pulmozyme. Out of all the bases, this has been the hardest getting things started and going. We are still hitting some bumps. We didn't even try to get them to order Tobi or Colistin. We just pay the 3 or 9 bucks and get it Wal~Mart. Even in Europe at a tiny clinic we didn't have this much trouble. I was just wondering what your experience has been like.
Chacha