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My son was just diagnosed with Cystic Fibrosis. I'm wondering how you balance the medical advice for treatments with your own beliefs/thoughts on more natural things.

For example - the doctor today wanted me to feed my 3 week old APPLESAUCE to aid in giving him the enzymes that he needs to take. There's got to be another way! It just doesn't seem right. They also questioned me on my not giving him vaccines, told me that we'd be using a lot of antibioitics, etc.

How do you find the balance? How do you know what issues to fight and which to give in to?

How do you not look like a negligent parent if you choose something different or refuse certain recommendations (like the RSV vaccine.....a shot every month during the winter??? ack!)

I'm at a loss!
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My child doesn't have CF but a dear friend's son does. From my discussions with her there are just some things you have to do medically even if that wasn't the route you were originally going to take. There are a few CF mommas here IIRC, hopefully they will chime in to help you walk the line between natural and medical needs. I'd start off by reading, reading, and more reading. Educate yourself on all things CF so you know to ask the right questions.

Finding the balance isn't always easy and it is something I struggle with regularly. Good luck to you momma!
 

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That sounds difficult. If you can make decisions from a place of trust, rather than fear, it helps, ime. As far as the vaccines, I trust our bodies. Same with avoiding antibiotics. Antibiotics counter our body's natural immune system by messing up the gut flora.

The enzymes sound like they could help proactively (I don't know otherwise; but some folks do have GI issues with enzymes. Certainly, there are many kinds of enzymes though.). A bit of organic, natural food isn't going to hurt to get a medicine down, imo. It really doesn't replace the optimal nutrition that you choose.

I assume the issue with antibiotics is that they were "warning" you that they would be "needed" frequently. I don't agree. I strongly recommend investigating classical homeopathy, which maximizes the immune system, even in conjunction with traditional medical care. It has cured my husband's asthma. (btw, I was a critical care nurse, with a cardio-pulmonary specialty, so I understand the medical side; but am an avid holistic care advocate.)

Best wishes,
Pat
 

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Well first off you absolutely do not have to feed him solids to get the enzymes into him. There's a powder version, Viokase, that can be mixed with a very small amount of liquid and fed however you wish. My daughter started enzymes 3wks ago and initially we were given a huge bottle of capsules to break open and feed the beads. That was a royal disaster as she's tube fed and the beads clogged our tube. The powdered enzymes are newer and more expensive but work just fine in liquid.

Yes, you will be using a lot of antibiotics. Naturally children with CF are prone to infection, lung particularly. However I fail to see how vaccinations would help with this. None of the vaccines address the infections CF kids are likely to contract.

The RSV vaccine I would highly encourage you to look into more. It is a shot, yes but it's not a vaccine. It's a shot of antibodies that help to fight off or lessen the severity of RSV which can be detrimental in children with lung conditions. There's a great thread over on the Preemie forum and I would take a look at it if I were you. I dread the day that our insurance will no longer pay for us to have RSV shots. It's a truly life saving shot that the vast majority of non-vaxing parents I've met will agree to.

Balance. You have to pick your battles. Do your research. Talk with others in your situation and decide what is and isn't acceptable to you. If you refuse a treatment, have your reasons listed out. Offer alternatives. We're facing a lot of things right now that I am not comfortable with as a natural parent (growth hormones is the biggie at the moment). I really have to set some of my beliefs aside and look at things from a more medical standpoint at times. Abx are awful but, for a child who's prone to infection and one with a chronic disease, they're inevitable and good.

My daughter does not have CF, that we know of. She had the genetic test done at 4mos which is 85% accurate. We've tried since then on 4 occasions to have a sweat test and she will not cooperate. She has many problems that cause the doctors to treat her as if she has CF, thus the enzymes.
 

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ITA with irangel. My roomate's son has CF, and I'll show her this thread, but she had many of the same questions. Her focus was/is diet. Whole foods, high calorie/nutrient content. She did give him some vaxes, I believe pertussis was one for sure. And abx have been a part of their lives, more than she wanted. Mostly diet (breastfeeding) and chest therapy are your tools for health.

I'll refer her to here, but pm me if you want an email address.

RSV shot was highly recommended. It's not a vax, though. You can ask on the preemie/nicu board, there's a ton of info there about synagis. I know that it's a free shot in Canada, where we are, unsure about the U.S.

 

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Quote:

Originally Posted by irangel View Post
Balance. You have to pick your battles. Do your research. Talk with others in your situation and decide what is and isn't acceptable to you. If you refuse a treatment, have your reasons listed out. Offer alternatives. ... I really have to set some of my beliefs aside and look at things from a more medical standpoint at times.
I'm not dealing with CF, but my son has immune deficiency, reactive airway disorder, mild epilepsy--the list goes on, so I'm familiar with the issue.

ITA with what irangel wrote above. It's a hard situation to be in--and an incredibly uncomfortable one when you find yourself giving in to things that go directly against your core in a way you truly believe may do more harm than good. The more information and input you have, the (slightly) easier these decisions become. And in support groups, sometimes you stumble on someone that has an alternative that you can live with--but that YOU will have to bring to the doctor's attention.
 
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