Remember Us?? Question...

ErinsMommy

New member
Hi Everybody! Remember us (Erin and Lindsay)? I finally got a computer at home and I'm so excited that I can talk to you guys again. Erin is home now, She's been home since August 5. We are actually living at my mother's until I can get back on my feet. I was forced to leave Erin's father (dennis) when he absolutely refused to quit smoking cigarettes. He said it wouldn't affect her cystic fibrosis and that "doctors were supposed to say that..." but we're happy here. And I have more help than i could hope for.
However...
Erin has developed a virus in her lungs. Sudamonus... or something like that. She is on Albuteral and Tobi nebulizers twice a day. Has anyone experienced this before and if so.... how was the outcome?
 

Beth

New member
Welcome back!! yes we remember you. My aunt has two boys with CF and she smokes. Just not a round them, in the cars, or in the house. I know that it hangs on you cloths and hair but the boys never complain and if they would say something she would quit.

Beth
 

JazzysMom

New member
Welcome back. I know the leaving thing is hard, but you need to take care of your little one. As far as the bacteria (not virus) pseudomonas. It is very common in CF patients. There are many antibiotics available to treat it. It is very hard to completely erradicate once it is colonized meaning literally taken up living space in the lungs. It lives on mucous basically. The more there is the more it thrives. Once one is tested positive for pseudomonas, it is very important that the treatments etc be done since we are "vulnerable" to it. I personally have never erradicated it & almost always test positive unless I have had a round of IV antibiotics. I dont want to tell you dont worry about it because it is a bacteria & it can cause damage if left untreated or not kept at bay. I can say not to panic since it is common among CFers. Its probably one thing that most of us can share in common. If you have any other questions about it, be sure to post. Again Welcome Back!
 

JazzysMom

New member
It cant be if left untreated. Like any bacteria that causes infection it can leave scar tissue. The more scar tissue the less the lungs work etc. Its isnt something that happens overnite. Its gradual which is why checkups, xrays, sputum cultures on a regular basis is so important. The idea is to prevent the bacterias from getting out of hand & causing too much scar tissue. The good news is that out of the bacterias to get its the lesser of the evils. There is one that is resistant to most if not all antibiotics.
 

julie

New member
Welcome back lindsay, It looks like others have already answered your questions, so I just wanted to say it's nice to see you and nice to hear Erin is doing well. Just a little note, Mark has cultured Pseudomonas on and off for about 15 years or so now, and his PFT's are stil around 85-92% and he is able to function very well. Like Melissa said, as long as it is treated promptly and properly, it is essentially just a part of CF life.

Good to see you and I am sorry about you and Dennis, but you have to do what is best for your child-it's understandable!
 

anonymous

New member
my daughter cultured it 2 months ago at age 7 months and she was on tobi twice a day for 28 days but her lungs were clear sounding so no albuteral but also was on cipro for 14 days with the tobi and hasn't cultured it since almost 3 months ago. in 2 weeks she has anotherappt. and culture and hopefully comes out clean.My blessings.
Katina
 

anonymous

New member
Hi Lindsay! I have been wondering about you and Erin. Sorry to hear that Dennis is being stubborn right now and I hope that he gets a clue soon but I am also glad to hear that you guys are happy where you are. About the pseudomonas, I would ask your DR about putting her on CIPRO (as someone else mentioned) I am not sure if she is too little for it or why they haven't already put her on it, but it (along with TOBI) is supposed to be very good at getting rid of pseudo. during the initial cultures.

Anyway, glad to see you again!
Kelli (mom of Sydney 2wcf)
 

HollyCatheryn

New member
<P>Cipro and Tobi, a couple of things to think about. The more antibiotics she's on, the more probiotic therapies you want to do with her. She will be happier and healthier if her body is in order. Think about Acidophilus and HSO (homeostatic soil organism) to combat yeast and bacterial imbalance in the gut, which can cause colic, diarrhea, rashes, lack of desire to eat, gas, etc. Check out <A href="http://www.geocities.com/MurrensNatureMama/wellness">www.geocities.com/MurrensNatureMama/wellness</A>. If she can take TOBI inhaled, it may be better for her. She won't have the same side effects of IV or oral antibiotics. Cipro, should be used with caution. One of the side effects is joint damage and problems with the growth and development of joints. In a child so young - in anyone still growing - it should be used with caution and full knowledge of the side effects. It also is so strong that it usually causes lots of yeast side effects. Consider using Tea Tree Oil or Grapefruit Seed Extract in a humidifier. Both of these are antimicrobial and can kill Pseudomonas. I do not know that it should be inhaled directly, but spraying it over her bed is fine. You can also clean with these to keep Pseudomonas from growing prolifically in your home. Pseudomonas grows in soil and water and is on nearly all water faucets and drains. It is impossible to stay away from it. Most people have no problem with it, but people with CF are susceptible to colonization. I have had Pseudomonas for over 20 years. I still have excellent lung function. It is not a death sentence, but it should be taken seriously. More than anything else, it dictates what antibiotics are chosen when they are needed. Pseudomonas is not susceptible to the same drugs as other microbes. Feel free to email me at <A href="mailto:jaloughlin3@sbcglobal.net">jaloughlin3@sbcglobal.net</A> if you have any questions about using non-conventional treatments with her. Another thing to think about (I can't remember if you are or were breastfeeding) is that a doctor can prescribe breastmilk and you can get it from a milk bank. It is especially good for getting the gut in good shape after lots of antibiotics. Breastmilk will hepl heal her gut and develop the lining so that she can better tolerate other foods and treatments later. Breastmilk is also antiinflammitory, antibacterial and analgesic. This means that it will actually act as a painkiller, will prevent infection and help reduce the effects of any infection she does get. If you are not currently breastfeeding, but think it could help your daughter, you can go to <A href="http://www.lalecheleague.org">www.lalecheleague.org</A> and type "cystic fibrosis" into the search. There are lots of articles about nursing babies with CF. From there you can also find someone who can help you induce lactation. There are ways to start nursing even after your baby is several months old and your milk has dried up. It takes patience, but most moms who have nursed babies with CF find that they are healthier on breastmilk than on formula. Most babies still need enzymes, but fewer.Hang in there. I know it is tough right now while everything is still new and seems to be constantly fluctuating. You will be a pro in no time. We are always here and happy to help anytime.</P>
 

anonymous

New member
Hey Lindsay,
Its Emilee! I was just thinking aobut you like last night and thinking I should try giving you a call seeing as I still have your number from your email. I just was curious to see how everything is going. It is so good to hear from you. I am sorry to hear that you had to leave Dennis. i am sure that wasn't easy but definitely best for Erins health. I am sure you are such a great mom. How has her health been? Again it is so good to hear from you and if you ever want to email again I would love to hear from you.

Emilee with 2 E's
 
Top