Hi, I have a question My son has been culturing staph the last few times at his clinic appointments. It is the staph that is treated when you have symptoms. My questions are he is constantly trying to clear a thick mucus in his throat which is helped after using his Pulmozyme but then returns. Could this be the staph and why it is not getting any better? Also, this type of staph is it only found in kids with cf or can anyone swab this? Thanks for your help in advance, jshet.
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staph
- Thread starter jshet
- Start date
Justinsmama
New member
Hi,
I just posed on the other message about staph. We too have cultured staph twice in the last few months. The first time he had symptoms and then his ped treated it. The second time the Clinic said not to treat without symptoms. I am not completely sure other than increased cough (he has no baseline cough) what else to look for. He just turned 8 and was only diagnosed last Feb. Pancrease failed about a year to a year and a half before that. He also cultures h. influenzae too. I also wonder if he cultures these because of CF. How old is your son? How long has he been diagnosed? I read somewhere staph and H. influenzae are the kinds of things that CF kids culture the first few years after being diagnosed typically. Not sure though. It all seems to overwhelming.
I just posed on the other message about staph. We too have cultured staph twice in the last few months. The first time he had symptoms and then his ped treated it. The second time the Clinic said not to treat without symptoms. I am not completely sure other than increased cough (he has no baseline cough) what else to look for. He just turned 8 and was only diagnosed last Feb. Pancrease failed about a year to a year and a half before that. He also cultures h. influenzae too. I also wonder if he cultures these because of CF. How old is your son? How long has he been diagnosed? I read somewhere staph and H. influenzae are the kinds of things that CF kids culture the first few years after being diagnosed typically. Not sure though. It all seems to overwhelming.
hi Justinmama, I agree it is a bit overwhelming at times. My son is 15, has autism and was diagnosed a year and a half ago. Should have been diagnosed before but the sweat test was done inappropriately . We are in the process of seeing a a gi who specialized in cf because my son now needs a g-tube. He only weighs 70 lbs so unfortunately after trying everything and failing this is what is best for him. My son has also only has cultured staph and h influenza. All and all my son is doing well, I no he could be doing worse so we are blessed. He has a great CF doctor and the best ped in the world and I know he would not be fairing as well as he is without them.. janelle
Justinsmama
New member
Welcome to the world of "should have been diagnosed." Justin's BMI dropped to below 3% when he started enzymes eventhough his fecal elastase went from 148 to 75 to 25 in 6 months. Is your son on enzymes? Justin has eosinophilic esophagitis and many kids with that have feeding tubes. We were worried about having to go to elimental formula and tube feeding. Luckily for us, the enzymes did a world of difference. He went from 40 pounds at turning 7 to 52 pounds turning 8!!!! We have also cultured strep, but that is all. Between Feb and May he had 3 full blown pneumonias, treated for strep (lungs) and then on antibiotic again in July for another infection. Before diagnosis and treating with enzymes (he is probably allergic to pork so there was fear of putting him on them) hsi body started rejecting everything. He became intollerent of EVERYTHING. His fructose levels were off the charts and he couldn't even eat fruit or veggies (except cucumber). He also has food allergies and eosinophilic esophagitis. I know how hard it is for a child to have to deal with CF but also other issues. Justin has EE, CF, wears glasses and now is being examined for a significant fine motor delay and other issues. He was so low in iron for critical brain development times (hemoglobin 6 and ferritin 1) that I am afraid it may have had an impact on his development.
Yes Jacob is on enzymes that help. He has celiac disease, and alot of allergies besides gluten/wheat he has milk, dairy, soy and rice allergies which really limits his diet and with the autism he limits himself even more because certain things he will not eat. If he could live on popcorn and popsicles we would have it made. If your school district in anything like ours I would go to outside therapies to work on fine motor delays. If you have access to a hospital or facility that has a pool, check into aqua therapy for ot and pt. My son has done these for many years and they are great, the kids love it. I wish there was a way around the g-tube, but it is whats going to be best for him. Thankfully he will eat what he wants during the day and use the g-tube while sleeping.
Justinsmama
New member
Hi,
I get the food allergies and how that compounds things. We are now gluten, egg, corn, tree nuts, peanuts, fish, shellfish, beef, pork, and turkey free. Being allowed to add milk back (only intollerent and a slight allergy) was a BIG thing for us. We are lucky that Jusitn is such a great eater. Please remember that while I understand how difficult the g-tube is (has been in the back of our mind with the EE since he was a baby) you have to do what you have to do to make sure he stays as healthy as possible. It will take some stress off both of you with eating issues. Hard to push a child when their body is telling them no, especially when it is SO IMPORTANT for our kids to be aware of what their bodies are saying. Our prayers are with you during this time. One thing you need to remember is that the better his BMI the better his outcome. When Justin's body mass index went below 3% is when his lung side of CF was triggered. I wish we would have done more to keep this from happening (not sure how much more I could have threatened our old doc's).
We will keep Jacob in our prayers.
I get the food allergies and how that compounds things. We are now gluten, egg, corn, tree nuts, peanuts, fish, shellfish, beef, pork, and turkey free. Being allowed to add milk back (only intollerent and a slight allergy) was a BIG thing for us. We are lucky that Jusitn is such a great eater. Please remember that while I understand how difficult the g-tube is (has been in the back of our mind with the EE since he was a baby) you have to do what you have to do to make sure he stays as healthy as possible. It will take some stress off both of you with eating issues. Hard to push a child when their body is telling them no, especially when it is SO IMPORTANT for our kids to be aware of what their bodies are saying. Our prayers are with you during this time. One thing you need to remember is that the better his BMI the better his outcome. When Justin's body mass index went below 3% is when his lung side of CF was triggered. I wish we would have done more to keep this from happening (not sure how much more I could have threatened our old doc's).
We will keep Jacob in our prayers.