Comfort a concern mother?

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FalseDisposition

Guest
My son is 20 months and has cf, he was diagnosed in utero. He had a bad cold two weeks ago and they gave him prednisolone and augmentin. He finished that up Tuesday and he was great Wednesday but Thursday this cold came back to him full-force. She said that he had pseudomonas but it was non-mucoidal so it doesn't stick around....Please, God help me! I'm so effing scared for him!!

<<edit>> If it helps, it was pseudomonas putida.
 

Ratatosk

Administrator
Staff member
I would insist they check the culture reports to see what the pseudo is sensitive to for treatment. Typically augmentin isn't used to treat it. Usually Tobi nebulized and maybe Cipro. Ds cultured nonmucoid pseudo at 3 months and we increased cpt to 4 times a day, Tobi Nebs twice a day. They need to be aggressive in treatment to eradicate it so it doesn't become colonized. Ds hasn't cultured it for over 3 years
 

Aboveallislove

Super Moderator
Absolutely agree with Ratatosk. Usually pseudo is treated with different meds and very aggressively. And also increasing nebs/vest to 4 times a day. Saying prayers for you all and giving you a big mom hug.
 

Printer

Active member
It sounds like he is being treated by a local Doctor. He needs to be seen at a CF Clinic by a CF Specialist.
 

Ratatosk

Administrator
Staff member
I see you edited, to indicate it was pseudo putida. IMO, they still need to assign the proper antibiotic based on what the culture reports indicate the bug is sensitive to. DS once cultured pseudo florenses (sp) while he was on keflex and tobi -- he needed a completely different abx to treat that infection. In recent years he's cultured steno maltophilia -- culture reports indicated it was resistant to one abx, so he was put on a different one.

Also, it could be that even IF the antibiotic was the correct one for treating the infection, one may need to be on it longer than say 10 days to 2 weeks. When DS was a baby he was being treated for a sinus infection and a few days after being off his antibiotic, he'd develop symptoms. The doctor decided to put him on a different dosage for a longer length of time to get rid of the infection once and for all.
 

JustDucky

New member
Augmentin usually doesn't do the trick for the pseudo family, at least that is what has been my experience and what my docs tell me. Sounds like he needs a different antibiotic that will target his strain of pseudo better.. If they did a culture, the sensitivities should tell them what would work best for him. I also agree that sometimes the course needs to be longer, I have found that I need longer courses of antibiotics than the average person (a non CF'er) with an infection. I hope your son feels better soon and gets on a treatment plan that will work for him. Sending hugs

Jenn 40 wCF
 
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Allansarmy

Guest
My son is 20 months and has cf, he was diagnosed in utero. He had a bad cold two weeks ago and they gave him prednisolone and augmentin. He finished that up Tuesday and he was great Wednesday but Thursday this cold came back to him full-force. She said that he had pseudomonas but it was non-mucoidal so it doesn't stick around....Please, God help me! I'm so effing scared for him!!

<<edit>> If it helps, it was pseudomonas putida.

Forgive me if this was already stated, I have a tendency to no read other people's post but just speak whats in my heart.

You have to remember that kids are going to get sick even without having CF. I would say the average kid around that age of 20 months will get a cold type of symptom at least 2 or 3 times a year. Their immune system is still adapting and when they teeth their little nose will run like crazy as well. Not saying that your child is teething now, but just pointing out another fact about youngsters. The important thing is for you to not get overly stressed. I am a father of a 16 year old boy that was diagnosed at 4 months old. My wife's sister had CF and had a double lung transplant. So you can imagine what was going through my mind when I found out my own child had this dreaded disease.

Here are some positive aspects in the world we live in today. First, you already said the number one thing. Your child was diagnosed early. My wife's sister did not get diagnosed until she was 10 years of age. Second, the doctors treat CF more aggressively than they use too. Third, with drugs like TOBI (which really help pseudomonas) and Pulmozyme, and the new one right on the Horizon called Kallydeco (sorry if I misspelled it) there is great hope for our children.

Hang in there, I know that every persistent cough and fever will worry you. There is nothing I or anyone else here on these boards, but I can tell you that God is looking out for you and your son and he sees you.

-Michael
 
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twentythreeyearsandcounting

Guest
I have an adult son with CF so I understand where you are coming from. Hang in there. The first thing I thought of is that it sounds like your son is not being seen at a CF clinic. A CF doctor would be treating him differently. I know how scary it is to have such a sick child but please remember that there are so many new drugs and treatments for this disease. My son was born with multiple problems almost 24 years ago and is still here. It is amazing to me what has happened with the treatment of this disease in that time. It is so scary to be a parent with a small child with this disease but I think you will get hope and reassurance from reading the posts on this site. I would just make sure he is seeing a CF specialist and not a pediatrician for treatment of anything CF related.
 
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