oral antibiotics? IVs? or ignore the forever ongoing treatments?

[anonymous]

I have never read the adult forums. I have always read the family. I am in COMPLETE shock after reading the entire messages on "Oral Anitbiotics for Pseudos". You guys go through so much. And it seems as if the pseudomonas leave your body if you get lucky! So after reading all of your messages I look at my 6 month old son who also is being treated for pseudos (Tobi for 3 months and Cipro liquid for 3 weeks) and now I ponder what all I am willing to put him through for an infection that may never leave his body. How many times will he be stuck by a needle? An IV here an IV there, this week or the week after for the rest of his life. How much meds will the doctors give him for the rest of his life??? Isn't there any natural way of defeating this horrible infection? I'm not sure I have the courage of inflicting pain on my son for the rest of his life.
Has anyone ever lived with CF without an IV antibiotic? Do I have any hope that my son will not suffer?

 

[anonymous]

I think it can be pretty rough for little ones w/ CF the first year or two of their lives. I know I was very, very sick as a child, but mine was mostly digestion problems. After about 2 years of age, though, I guess I gained some strength & was less sick & really had a pretty normal childhood. Of course, with CF, each case is a little different. There may be some out there that it's been a constant struggle their whole lives. Pseudomonas is somewhat manageable. You just have to knock it down once in awhile. It's not the death sentence that some make it out to be, it just needs to be controlled as well as possible. You may ask your Dr about garlic as a natural treatment. I've heard it's good for staph & aspergillus, but not sure about studies on pseudomonas. Garlic would be a little tough on a 6 month old, but may be something you store away in your mind for a year or so down the road.
I know it's very hard to see your baby be in pain knowing he didn't do anything to deserve it, but remember that this is necessary to keep him healthy. I'm hoping he gains some strength & his immune system gets to a point where his body can help fight infections & not be strictly dependent on antibiotics to do it.
I know it's just as rough or worse on the parents as it is on the child to see them go through so much.
Hang in there<img src="i/expressions/sun.gif" border="0">

 

[dresapp]

Getting stuck with IV's and needles is by far less painful than not being able to breath and feeling really crappy beyond what you can imagine if you dont take the drugs. I would love if there were natural ways to combat it but Ill tell you through experience, the "tune ups" are worth it when you are really low and the drugs are constantly changing giving you better chances at not becoming resistant to them all. Take it in stride and please dont put off antibiotic therapy if its needed because without it, your childs health could escalate if he was sick enough and if your strong for him he will learn from you. Just take it one day at a time. However I would look into "natural therapies for prevention. I use several and am always looking for more but you may want to be careful and ask a professional since your child is so young. Good luck with your search!

 

[anonymous]

Thank you both for your encouraging words and kindness. After reading your messages, I do have a new hope to face tomorrow and then the next. I will talk to his doc next week. FYI I am still nursing with neosure as a supplement formula. I eat a lot of garlic and at first his stomach would be sensitive to that. But now his stomach is adjusting fine. He hasn't been weighed in a while, I would say he around 20lbs, and 27in. long. He will be 6 months next week. I would say that he is growing pretty good. His appetite is amazing. He eats every 2 hours. And he is doing good on the diapers.
Thanks again!

 

[anonymous]

Congratulations for continuing to nurse. Not everyone can do it for many different reasons, but there are studies showing that CF infants actually thrive more while on breast milk. Every person's Cf affects them differently but from what I have read on this site, in books, talked about with doctors and other cfers is that sometimes infancy can be the most complicated time for a cf child, until they get much older (30's, 40's 50's...) some children have a very difficult time until 2-3 years old and them all their complications seem to clear up. some believe that's because they become more physically active and that really assists in natural clearance of the lungs-which does seem to make sense. I know this might seem like a dumb question but do you do chest pt on him, that in combination with the medications should help.
There are people who go through most of their life never needing IV antibiotics, but that really depends on the severity of a persons CF. I wish you the best of luck and keep us informed of what is going on with your son and you. you are in my thoughts

Julie

 

[anonymous]

Hi Julie!

Thank you for your encouragement as well. Nursing has been a challange, but without a queton one of the most rewarding talents God has allowed for me. Bonding with little Noah while he nurses is so precious. I do 24 minutes pt sessions on Naoh 2x day. If he starts to sound congested, I start patting until I can help him clear his throat. I have been doing pt's on him 2x day since he was 3 weeks old. When he turned 5 months old, the fighting stop. He now gives in and knows it is part of his daily routine, just like his 7 o'clock bath time!!
Thanks again

 

[anonymous]

It sounds like you are doing all, and everything that you can for him right now. All I can do is keep your family and son in my thoughts and prayers and I will do that. Keep us posted on how he is doing as things progress, and take care of yourself too!

Julie