Hi all,
My son is 3 and has had 4 sweat test and the pulminologist called with his last reults and said our son has cf he suspects its a mild case? does anyone know what exactly that means. His sweet test are always borderline he said they are so close to 60 he wants to do a genetic test the first of the week.
He said he suspects our son has inhereted 1 gene from one of us and part of a gene from the other. This gene stuff is confusing. I have so many questions i couldnt even think to ask him because all I could do was cry.
He had a bronchoscopy on monday and it showed inflammation and a build up of white stuff in his tubes, this was before we got the results back on the sweat test. They tested some of the stuff in his lungs it didnt grow anything, my question is do you think that stuff is just from cf?I felt so bad for my lil guy cause his lungs look llike they should really hurt.
He said we have lots of things to do ,but doesn't want to do them all at once it would just be to hard on him. I wonder what he means by lots of stuff to do, anyone have any ideas.
I guess I am just wondering what happens next? like what are the treatments for cf. Also is diarhea normal for kids with cf?
Thanks for reading this post
Jodie

There's a fair amount of stuff you have to do with a child who has CF, but it becomes routine. People with CF usually need digestive enzymes to help them digest fats and protein -- otherwise they have loose, sometimes foul smelling, greasy stools. Before each meal, we sprinkle the contents of a couple of the capsules on applesauce and then feed him. CFers also need about 1/3 more calories than normal kids -- so whole milk, we add butter and oil to his food. He can eat whatever he wants to keep his weight up.

As far as treatments -- ds is 22 months old and we've been doing manual chest physiotherapy (CPT) since he was about a week old. We do this at least 3 times a day. Before work, after work and before bed. We do a nebulizer treatment while patting/thumping him on the back, chest and sides. WHen he's a little bit older, we'll get a vest, so we can plug him in and he can do treatments while watching tv. Because ds cultured a couple of things, he also has a nebulizer antibiotic treatment twice a day, every other month. We do this after his CPT and he usually dozes or watches videos.

He takes vitamins, an antibiotic and biles salts (actigall) several times a day.

We send him to day care. He keeps us busy 'cuz he's a busy toddler and his treatments keep us busy, but we've got it down to a routine. Our most important goal is to keep his lungs healthy. Keep him healthy.

I would suggest genetic testing to identify which genes he has. Max has two copies of delta f 508 -- which is classic CF. I would also recommend going to a cf clinic or cf doctor. Someone who is familiar with treating a child with CF so you get the best possible treatment options for your child.

Thank you for all the info, your son sounds like he is very busy!!!
Stevens pulm is the cf clinic doctor. Steven also has a feeding tube do to feeding problems since birth, Steven was 11 weeks premature so his severe lung issue was always contributed to being preemie, the only problem with this is as he gets older his lungs should have gotten better, instead they have just got worse.

Once you get into a routine, things'll go fine. I suppose the only thing that he might take issue with is the treatments. We've been "beating" ds since he was a week old and it pretty much calms him and puts him to sleep; however, starting with an older child takes a little bit of time, but I'm sure he'll get used to it. I just met someone who's child was dx'd at 1 1/2 years --- at first her child fought and screamed, but now she sometimes dozes off.

DS's doctor has told us time and time again that proper lung care is very important -- you can regain weight, add things to increase calories, but if you lose lung tissue -- you'll never get it back. So we do CPT religiously -- 3 times a day -- more if he's not feeling well. Sometimes while I'm waiting in the doctor's office or sitting at church, watching tv, I'll pat his chest and back w/out nebs, just to get an extra treatment in and things moving.

hi you answered my thread about the newborn in the hospital for 2 months well auctually he is still there going on 3 months now after having his reconnect surgery last week and us thinking things are going ok now they have discovered he has CF --I printed out your reply and took it to them on my last thread when you suggested CF becouse our situations were so alike ---I think i was more or less blown off thank you.

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MrsEjaffe,

I am so relieved they have finally found out a reason for your child's condition and they can start treating him. Reading your posts I couldn't believe the similarities between our children. While we didn't feel like it at the time, we were so fortunate that a neonatologist initially diagnosed the problem, ordered blood tests and had DS flown to a children's hospital where the doctors there also concurred with the diagnosis.

DS had a rough start, but no one would no it by looking at him today. He's an active toddler who just requires a few extra things to keep him healthy.

MrsEjaffe,

So sorry to hear that your baby is still in the NICU. My son, now 10 mo., has CF, was diagnosed at 2 days old. He had a meconium illeus, required surgery and had an ileostomy. He was in the hospital for almost 2 months and had numerous problems. PICC line, weight gain issues,huge stool out-put, infection, liver problems, UTI. Seemed to be one thing after the other. He finally came home after us pushing for home care. He came home on TPN, lipids and multiple antibiotics. It was all very scary at the time but we learned how to care for his line, give him TPN and care for his ostomy. All that on top of the CF issues.We were ready to do anything to get him home. He did very well at home and gained weight much better than he ever did in the hospital. He had his ostomy reconnected when he was 2.5 months and his absorbtion was much better. Right now he weighs over 23 lbs and he is doing really well. If you feel comfortable with home care, provided he is stable enough, I think it is a good option to talk about with your drs. None of ours ever mentioned it to us and if we hadn't pressed the issue who knows how long he would have been there. Just know that there is a light at the end of the tunnel, even thought it doesn't seem like it now. Keep fighting on behalf of your son. They are so worth it.