I just had a quick question for all of you that know about Pseudomonas. My daughter Maggie was diag with CF 6 months ago, she has been pretty healthy since then but cultured Pseudomonas 6 weeks ago. I have been waiting for her to start Tobi but am having trouble getting the Meds. The CF doctors are not taking this very serious and it's scary the heck out of me. Isn't it going to be more damaging to her lungs the longer she goes without Med? My insurance company isn't wanting to pay for them so I'm trying to get help with the Tobi foundation. It is taking along time and Maggie is only getting sicker. I really don't want to spend Christmas in the hospital with my family, Maggie is 2 and a half and is so excited for the holidays!!! If anybody knows where I might get more info on Pseudomonas and the effects it might have I would appreicate it.
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Pseudomonas
- Thread starter rrew62
- Start date
My daughter Kait cultures pseudomonas and the only time that we treat it with antibiotics is when she is sick, so if your child is sick, i would be real aggressive in treating her. I would call the CF clinic and ask them what they want you to do, being sick for over a month with no antibiotics is not a good thing.
I wish you the best in getting the meds that you need so your child gets better sooner.
Kaitsmom<img src="i/expressions/rose.gif" border="0">
I wish you the best in getting the meds that you need so your child gets better sooner.
Kaitsmom<img src="i/expressions/rose.gif" border="0">
Have you had your doctor write a 'letter of necessity' to your insurance company?
My insurance company didn't want to cover inhaled Colistin for me but after a letter from the doctor, they decided they would cover it.
Also, in the meantime, I would at least have your daughter be on an oral med for the pseudomonas.
What is her age? In my opinion, that could have some bearing on how the pseudomonas effects her. If she's an infant and her immune system isn't fully developed then maybe it could effect her more than if she's 4-5. I'm not a doctor, just my opinion.
I have had pseudomonas for years now & while it isn't the ideal thing to have, I just knock it down with meds every once in awhile and seem to do OK.
My insurance company didn't want to cover inhaled Colistin for me but after a letter from the doctor, they decided they would cover it.
Also, in the meantime, I would at least have your daughter be on an oral med for the pseudomonas.
What is her age? In my opinion, that could have some bearing on how the pseudomonas effects her. If she's an infant and her immune system isn't fully developed then maybe it could effect her more than if she's 4-5. I'm not a doctor, just my opinion.
I have had pseudomonas for years now & while it isn't the ideal thing to have, I just knock it down with meds every once in awhile and seem to do OK.
You need to get on the insurance company. If its in case review then find how who is handling it & call them constantly. Tell them that the cost of the med versus a hospital stay & long term damage is much cheaper. In the meantime can your doctor prescribe something orally that will work until you get the desired med?
What we do is have a pharmacy compound tobramycin for inhalation (preservative free). It is considerably less expensive and just as effective since it is basically the same as TOBI. The makers of TOBI have a patent on the milligrams of tobramycin per mls of solution. To get around this the pharmacy has to compound using less tobramycin per ml of solution. This translates into more solution to nebulize which can be a pain. Maybe this could be an option for you. I know that the CF Pharmacy in Florida will compound this also. We currently use IV Solutions.
LoveShines4Austin
New member
Our pharmacy delayed giving us the TOBI, but I could hardly blame them. A one month supply of TOBI costs $3,498. I have medi/cal and am in CA so we have California Children's Services that helps cover any cost for CF that medi/cal will not. Maybe, depending on what state you are in, there might be something available to supplement your insurance? And yes, your daughter should be on an oral antibiotic also. I do know that our CF docs didn't even bother to tell me when Austin had cultured a +2 for pseudomonas in 2002. They told me that they don't even treat it unless it is at +4 or above. Also, sometimes the insurance companies stall when there is no diagnosis code written down on each request for them to see, even though they know your daughter has CF, it's always good to make sure the doctors are LOUD & CLEAR as to why the medicine is needed. I wish you all the best and hope you can keep your little one home for the holidays.
I was just shocked at how much the price of Tobi has increased in the 2 years we've been using it on DS. We have an out of pocket max of $1000 on prescriptions each year, then we just pay $15 per script. Well, until we reach the $1000 we have to pay 20%. First time I filled the prescription -- my cost was $536. The tobi at the time cost $2700 for a months supply. We have since signed up with the tobi foundation, so we just have the $15 copay, but the cost listed on my last CF pharmacy receipt was $3500. Yikes! Wonder how much the new, powdered, e-flow system of Tobi is going to run when it comes out next year?
Liza
Liza
My daughter has not cultured pseudomonas yet, but I was under the impression that if you treat pseudomonas aggressively when a child under 5 first is colonized that you have a greater chance of erradicately it. This is what our CF docs have said to us. I thought part of the erradication would be : treatment with antibitiotics like TOBI and Cipro. Is this true??
Rebecca(mom to Sammy 7 no CF and Maggie almost 3 with CF)
Rebecca(mom to Sammy 7 no CF and Maggie almost 3 with CF)
Hi My son was just diagnosed with pseudomonas. He is 12 and was just diagnosed with Cf 3 years ago. (Nov. 25 '02). We are waiting to see if his medicaid will cover the cost. I am really scared of this diagnosis. It also comes at the same time they have decided to do a feeding tube. He is having a lot of nutritional problems. I have heard horror stories of Pseudomonas and I wonder if any one knows of any real problems this causes if he doen't get the medicine he needs. We just got his lung functions back up and really are trying not to let them drop back down. Any advice would be nice.
Kandi Moore
mother of Eric 12 w/cf and Anthony10 and Megan 2 no Cf
Kandi Moore
mother of Eric 12 w/cf and Anthony10 and Megan 2 no Cf
I am a little confused about the pseudomonas and the tobi breathing medicine. My son got pseudomonas at the age of 2 months and cepcia at 4. He is now 4. We have never had the inhaled tobi and are not on it now at home. We do the Pulmozyme, Pumicort and albuterol with saline. Can someone tell me if he should be on the tobi??? and is it something that is to be done everyday???? He has the tobi thru IV when he does clean-outs, he has had 2 this year. s this the same tobi we are talking about?? I am just confused by reading these posts.
Thanks
Angie 4kidsmom not signed in
Thanks
Angie 4kidsmom not signed in
Think there are different kinds of pseudomonas. Mucoid and nonmucoid. DS is 3 and has the nonmucoid. He's on Tobi and it's my understanding that with early diagnosis and treatment that tobi has been found to erradicate it. Later on if/when it becomes mucoid it can cause more problems and is more difficult to get rid of.
Thanks for all the info, It's so hard to just sit and watch her and know she would be better if she was on Meds. I will wait intill Monday and if I don't hear anything I'm going to take her to the Hospital. It drives me crazy to know that the insurance won't pay for her Meds but if I take her to the hospital they will pay 100% of her bill. Anyway I'll keep you posted on what happens.
Yes, the other post is correct -- two kinds of pseudomonas -- mucoid and nonmucoid. It is my understanding that most of the time it starts with nonmucoid, then over time, if not eradicated the patient becomes colonized with mucoid PA. The difference being:
Mucoid PA - the bacteria excretes a mucus lining around itself which makes it difficult for antibiotics to penetrate -- if you are colonized with mucoid PA, you are most likely "knocking down" the bacteria with IV antibiotics but you will not get rid of it entirely.
Non-mucoid PA -- if you culture this, and you treat it early.... and if everything goes just right.... it can be completely eradicated.
I'm sure there may be exceptions to this brief explanation -- but that is what I took home from our doctor when I asked about it.
My daughter cultured nonmucoid PA for the first time this summer. She is 17 years old. She went on 28 days of inhaled TOBI and 4 weeks of Cipro. She was retested in August and November and so far there is no sign of PA again.
Mucoid PA - the bacteria excretes a mucus lining around itself which makes it difficult for antibiotics to penetrate -- if you are colonized with mucoid PA, you are most likely "knocking down" the bacteria with IV antibiotics but you will not get rid of it entirely.
Non-mucoid PA -- if you culture this, and you treat it early.... and if everything goes just right.... it can be completely eradicated.
I'm sure there may be exceptions to this brief explanation -- but that is what I took home from our doctor when I asked about it.
My daughter cultured nonmucoid PA for the first time this summer. She is 17 years old. She went on 28 days of inhaled TOBI and 4 weeks of Cipro. She was retested in August and November and so far there is no sign of PA again.
Through participating on other boards and hearing other's stories, I have read that mucoid Pseudomonas can be reverted to non-mucoid and resistant Pseudomonas can become sensitive to antibiotics with magnesium supplementation. Many CF meds deplete the body of magnesium. Pseudomonas loves magnesium deficiency. The son of the woman who moderates the CF nutrition board was able to eradicate his mucoid pseudomonas with a combination of magnesium and essential oil inhalations. I believe that he still cultures non-mucoid PA.