My Son is 15 months with CF, and although we have cultured Pseudomonas once and not since after a heavy lot of antibiotics, we are yet to have any chest infections (even when he cultured pseudomonas).From what I have read that is the one of the most common symptoms of CF?I would just like to know from other people how often Chest Infections occur and is it usually due to something like Pseudomonas?I am so new to this all still, I have many questions but am afraid of sounding silly!Really what I want to know is, now that we have apparently eradicated pseudomonas, if he does get them again will the major symptom of this be pneumonia or a chest infection?He is a VERY active child and unfortunately for me loves to get into EVERYTHING!!!!and taste it as well!I just want to try my best to be on the ball and at the appearence of any new symptom act swiftly.His weight and height are both in the 90th centile so he is not struggling with malabsorption.I appreciate anyones advice on this, and I am not wrapping him up in a bubble and trying to stop him from doing anything but the early culture of pseudomonas I must admit did put me on guard for a bit!RebekahMother to Matt 15mths w/CF<img src="i/expressions/face-icon-small-confused.gif" border="0">
Frequency of chest infections?
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I usually culture Pseudomonas, and I have never been in the hospital with pneumonia or anything like that. I usually have to take 1 months worth of Cipro every year and this fall I am going to try Colistin and see if I improve. It is good that he is very active, as long as he is active and gets exercise that will help keep infections away.Dave 29 w/cf
my son is 2 yrs old diagnosed by a new born screening and I am also not to educated on CF. He is very active and to puts everything in his mouth. pseudomonas is everywhere from what I understand sinks puddles etc it will be close to impossible not to come in contact with it. My son has had no symptoms of CF as of yet. He doesn't take any enzymes and has had just 2 colds with ear infections that required antibiotics, but I am always on the lookout for any problems. It can be consuming. Sorry I'm not answering your question but I do feel your concern.
As the parent of a young child I can sympathize. When Ashley was young everything went in her mouth and we found it stressful. When they get to an age where they understand, which I think is about 18 months, starting telling them you will take away their things. Whenever she used to put stuff in her mouth we would put it in a box to donate to other kids (not throw away). She only lost about 3 toys before she realized we were serious and hasn't done it since. On a lighter side one day I saw her chewing on her hand and she asked if I was going to give it away (it was cute!).We were told that pseudomonas is not as devastating as it once was. Of course, I am still concerned about it and hope it does not happen but unfortunately I don't think we have a lot of control over it. We were also told that the average person (no cf) gets between 6-12 colds per year, and it is impossible to keep your child free of colds and infections.My advice is to keep your child active...do not put him in a bubble. As early as possible teach him proper hygience and make sure he washes his hands before he eats, after using the bathroom, or after being near someone with a cold (it is impossible to avoid this). We do not have total control over germs but we do have some. Also keep in mind that you can over do it by washing your hands all the time because this kills the good bacteria to
ur dr. put Ashley on a probiotic because she was on antibiotics often for ear and sinus infections and her health has improved. It has actually reduced the amount of infections she gets. Talk to your CF team and discuss this possibility for your son.
ur dr. put Ashley on a probiotic because she was on antibiotics often for ear and sinus infections and her health has improved. It has actually reduced the amount of infections she gets. Talk to your CF team and discuss this possibility for your son.Rebekah,My son is 3 years old and has never exhibited any signs of a chest infection. He NEVER coughs unless he has a cold. Last month, he had a cold and ever since he recovered, he seems to be coughing more. And when I say that he is coughing more, it is not a lot more... just very slightly more. I just notice that he coughs or needs to cough more than usual. He went in yesterday for his check up and got a throat culture. They called today and said he hasan infection with gram negative bacteria but won't know until next week what it is. I won't be too surprised if it is Pseudomonas but am hoping it is not. Regardless, he is taking Bactrim right now.He is running around laughing and playing right now. I don't see any symptoms of a chest infection (aside from the SLIGHT increase in his cough).Darlamom to Jared (3 with CF) and Lilly (5 mo. no CF)
My daughter is 16 mths. old and was diagnosed at three months of age due to failure to thrive. (She is pancreatic insufficient, takes CREON 5 and recently had a g-tube placed. ) At six months, she was hospitalized with a chest infection and a bronchoscopy was done. She cultured positive for pseudomonas but was not treated for it because our pulmonologist believed her infection was due to a virus not the pseudomonas ????? (We have since switched to another pulmonologist) When she began retracting and coughing soon afterward we began a round of Cipro and Tobi. She continued the one month on and one month off schedule of Tobi for three months. She always did relatively well while on the Tobi but within two weeks of being off it, she would get sick again. By "sick" - I mean, the retracting would become more evident, cough would slowly increase . . . it was always a gradual process. She continued to get throat cultures every 2-3 months but never cultured positive for pseudomonas again. She cultured positive for Staph. during another hospital stay where she received 14 days of I.V. antibiotics. Even after the round of I.V. antibiotics, she was sick again in two weeks. She did another round of Tobi and did fairly well during the month of June. I attribute this also to the g-tube placement and the supplemental nutrition she is receiving. Just when I thought that we were finally getting out of the "hole" that we have been in since the initial diagnosis, she is now sick again. She is now on Bactrim, Cipro, Orapred, Albuterol, Pulmazyme twice a day, Flovent. And - she is still not culturing positive for anything. However, her retractions are more severe and her cough is progressively getting worse. We give her CPT three times a day religiously.Our CF team believes that because of her symptoms she should be treated for pseudomonas despite the negative cultures. She will begin Tobi again tonight and if no improvement is seen soon, she will probably receive I.V. antibiotics again. I guess the reason I am posting today is out of sheer frustration and anger. Anger with this disease that keeps getting the best of us. Anger at seeing what happens to my daughter, my family (we have two other daughters, no CF, ages 3 and 5), and myself when she gets ill. When I should be sleeping,I find myself searching sites and message boards to find someone in a similar situation - with a child so young, who already has a g-tube, repeated hospitalizations, pseudomonas ... I don't know why ... maybe so I won't feel so isolated ... maybe so I won't feel that she has a severe case ... maybe so I won't fear the future so much. Rebekah - in reply to your inquiries about future chest infections: Since your son has cultured pseudomonas they probably will treat any flare up - increase in cough, retractions - with Cipro or Tobi. In my daughter's case these flare-ups have always been a gradual process not an abrupt illness and she has never had pneumonia. The important thing is to maintain a high level of nutrition. Studies have shown that good nutrition from birth to age three improves lung function down the road. Good luck and take care.Maria - mother of beautiful Samantha
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Beaz
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Your story sounds very familiar-repeated hospitalizations,g-tube,pseudomonas,stenotrophomonas,etc,etc. It can be really demoralizing and frightening. When I asked the doctors if I was missing something-ie is my son's case much more severe than I realize-they said two things that helped(one of which has proven to be more or less true so far)1: Kids will often have a dramatic improvement around age 3 due to increased growth of the lungs and larger bronchi and 2: A crappy early course does not automatically mean a worse prognosis.I guess what I really mean is hang in there-you may see some real improvement,but it could take some time and growth.
Beaz, That is very interesting information you have given about how their health improves at 3 yrs old and why. Reading this struck me because my daughter had a lot of minor issues for the first 3 yrs of live and then suddenly she started doing better. We have attributed it to other things, like the use of the probiotic, but I will definitely discuss this at clinic next week.Heather....mom to Ashley
Baez- Thank you for your reply. Although I have heard those same statements by our doctors, for some reason it holds more promise to me when said by a fellow parent. My daughter also cultured a trace of stenotrophomonas a couple months ago, which is why she was put on Bactrim when her cough recently increased. A week went by with no improvement, so we started Cipro and awaited results of her throat culture. So far it just shows normal flora, but because her symptoms are not improving we also began Tobi again last night. I may just be a wishful thinker, but Sami's breathing seemed to improve this morning after her round of Tobi and her Bactrim. Maybe she needed the powerful combination of the two. Nevertheless, tomorrow we are scheduled to see our pulmonologist to decide if she is making enough progress to avoid I.V. antibiotics. My husband and I have decided to learn to administer the I.V.'s at home if it comes to that. I am a little nervous at the thought of everything it will require. Have you (or has anyone else) ever done the I.V.'s at home with an infant/toddler?
Hello Rebekah here!It is very interesting reading everyones experiences, I felt like the only parent that had a child culture Pseudomonas so early.But obviously that is not the case at all!Maria thank you for your response, you have really been through it all and I hope that you get some relief soon.I have never heard that at around 3 years they improve but that is good to know because when you are going through a rough time when they are young you do lie in bed at night and worry that your child has a severe case.Which I know is my worst fear.You can't change that they have CF but you really hope that it isn't going to be severe.Matthew has been well since finishing the Tobi and so we are enjoying the break no matter how long it lasts.RebekahMother to Matt 15 mths w/CF
Our daughter first cultured Pseudomonas at 4 months old...no cold or anything else. We put her on TOBI aerosol and got rid of it. She then cultured again at 8 months and again we put her on TOBI. At 13 months, when she cultured again, we had to do IV treatments because it is highly unusual to culture this many times at this age. We were able to get rid of it for about 9 months when she got it again...ugh!!! We went back to TOBI treatments ( on again, off again for 6 months). I am happy to say that she is 4 years old and has not had it since....everyone, please knock on wood!!!
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Beaz
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In reply to your question about home IVs, we started doing them at home as young as they would let us-this varies widely. But, the important part is, it's easy! When you are initially in the hospital getting the PICC and getting the med levels adjusted,ask the nurses to teach you, then let you do it. Do it every time and by the time you are ready to go home you are a pro. You will have the back up of your homecare company and a nurse will probably help you get started. The first time is scary, but its SO much better than being in the hospital. Good luck!
My son (8 months old) was diagnosed at 2 weeks old. Since December he has been on Bactrim 3 times. Interesting enough, I started looking for patterns and realized that my infant seem to get sick shortly after each of his trips to the CF Center. I'm not sure what my options are going to be but, I worry that I may have exposed him to more threating situations by taking him to the CF Center. Any option that keeps them out of the hospital or CF centers would seem greatly benefitial to your child.
Pseudomonas and staphilococcus aureus can easily be caught at the hospital, quickly cross-transmitted, caught at home. Or simply walking in the street, close to people caughing in the air....In France, we are strongly advised to follow some rules. Here are some samples :wash hands every time it's possible (letting some water flow in the drain when it has not be used for some hours)do not caugh close to CF kidswear face masks in case of sicknessalways close the rest-room cover before using the "water drive-out" to avoid a spraying effectget rid of any flower-pot containing still waterIt's not a question of bubbling the kid, it's just to delay cultures that will for sure happen some day, and we may even won't know why , where, or how it started. But the latest it cultures, the best it is.If it is of interest for one of you, I can post the hygiene advises we have.
We are not encouraged to come into contact with other CF patients during clinic visits. My daughter is 4 and I always bring her some of her own things to play with (such as books). We always use Purell or wash our hands before we leave the hospital parking lot. I know some of the other hospitals around put the CF patients directly into an exam room upon arrival so that they do not cross-contaminate. They are also hospitalizing patients only when absolutely necessary (in Canada anyways), to avoid this problem.Make sure your dr washes his/her hands before examining your child (Don't be shey). If you really feel it is a problem then have your child wear a mask at clinic. They have some nice ones for kids with decorations that they might like, or try decorating those store bought ones with non-toxic markers or stickers.
I always culture pseudomonas and staph, even after weeks of IV antibiotics. Generally, I need IV antibiotics every three to four months. As far as precautions, while in the hospital there is a strict "no contact" w/ other cf pt policy. At clinic, we are brought immediately into a room and, of course, gowns and gloves are always worn by docs. They even gave me a new "cf pass" last time I went to clinic, it is to cut wait time in all departments of the hospital so I never have to sit in a waiting rm w/ other sick people, I just give them my pass and they put me in a private room. Despite the fact that this could make you feel a little alienated from the rest of the world, personally I appreciate not having to wait in a room w/ a bunch of sick people and the germs they are spreading. Who really wants to hang out in a busy hospital waiting rm anyway? 26 yr old female w/ CF.
Hi everyone,Samantha averted I.V. antibiotics. Our doctor agreed that she was improving with the addition of Tobi. Rebekah and Baez thanks for the kind words and advice. I agree that keeping your child out of the hospital is best. When Samantha had her first round of I.V.'s (a 14 day stay at the hospital) she ended up acquiring rotavirus on day 11. Interestingly, the patient next door had rotavirus, and we shared the same nurse one night . . .I carry Purell and we make sure to wash Sami's hands as soon as we leave the CF center. Toddlers want to touch everything in the room, and that is scary.I just wanted to comment that these were my first posts on this site and it has been an incredible support and outlet for me. I will continue to post and I hope to continue to hear from all. Thanks! Maria - Samantha's mom (16 mths wCF)/ Raquel (5) and Alexandra (3) no CF