My baby has Cystic Fibrosis :-( - Page 3

[Plaid Leopard]

Still thinking of you and your little one.

[mommajb]

How are you doing Mnkygrl? Did you get the test results back? What are you being told?

Please keep us updated if you can.

[mnkygrl79]

thank you everyone for your thoughts and well wishes! We're doing well - NOlan definitely doesn't like taking the enzymes - but it's something he has to do - but he's not spitting up as much and doesn't seem to be as gassy/in pain, so I guess they're helping out.

Our next appt is this coming Tuesday - I don't know if we'll get the genetic results then with the exact mutations, but hopefully the results will be in. We're also going to do an x-ray for a baseline on his lungs and learn more about doing chest percussion therapy.

I'm doing better - I don't cry every time I talk about it now - so that's good. It took me a while to realize that he IS still the same baby, my precious son. And if we can be really good and proactive in his care, then he can hopefully lead a long and fulfilling life.

I will keep everyone updated on his progress and I"ll probably be asking for support if he gets sick - this community has been such a wealth of information and support - I don't know where I'd be without MDC. I may not post a ton, but I do a lot of reading, and I am just so very thankful for this community!

LOVE YOU MAMMAS!

[AmyMN]

Don't know if this is helpful or not, from Weston A. Price website:

Evening Primrose Oil, Borage Oil or Black Currant Oil: These oils contain a fatty acid called gamma-linolenic acid or GLA, which the body produces from omega-6 linoleic acid by the action of special enzymes. In many individuals the production or effectiveness of this enzyme is compromised, especially as they grow older. Malnutrition, consumption of hydrogenated oils and diabetes inhibit the conversion of omega-6 linoleic acid to GLA. GLA-rich oils have been used to treat cancer, premenstrual syndrome, breast disease, scleroderma, colitis, irritable bowel syndrome and cystic fibrosis. They have been shown to increase liver function and mental acuity.

[spedteacher30]

Andrea--

I know we are in the same general vicinity. Let me know if you need help finding the best docs to work with. my mom works for the children's medical center and can easily steer you (via me) in the right direction.

We have friends who are respiratory therapists as well--now that I think about it, though I don't know if either works with kids per se. Let me know if there is any way i can use those connections to help you out...

[mighty-mama]

Andrea,
thanks for the update, I cannot fathom what you are feeling. I am so sorry your little man has to battle such an ugly disease..

Cherish every day with him, he is a very special boy and has a very special mama..