You may find some history interesting.
[My daughter] had a very poorly first year, cultured PA at 9 months, couldn't eradicate with three months of orals and nebs, picc line two weeks after first birthday and a three combo of antibiotics. Failure to thrive, stools 15+ a day. Peripheral airway damage.
Incidentally our antiB use is different to yours they start from birth daily regardless of status, she was allergic to Fluclox the first choice so from 3 weeks was on twice daily Co amoxiclv. She was a wreck.
After the ivs I knew she would end up dying on the route we were already on at 1.
I stopped all antis, we used colloidal silver, curcumin, oregano oil, Vit C then came the glutathione pointed out to me by [a friend]. God bless his soul. I credit him with so much.
So after that and lots of probiotics she started growing, her lung function next year was normal (our clinic have a infant lab so actually sedate them and measure peripheral airways)
Until this day hasn't cultured PA. [She only cultures HI.]
In fact in the next 5 years had one two week course of antis when she had flu, not so much for a positive culture but it hit her hard and we wanted to cover her.
She had a couple HI scant growths over the years and was given allicin and re swabbed two weeks later, same thing when she had trace of staph.
We've been thankful we found another way but a consultant at start of Jan sent me into a whirlwind when he said about long term side effects.
So last weeks results were somewhat of a shock. Her fev1 is 97 % and fevc112% gas washout normal, airway resistance normal.
Next day call saying middle right lobe collapse thick secretions in section and airway dilation along with lymph nodes on that side.
We started antis.
Clinic are now pushing DNase but I just don't feel comfortable with the mechanism in which it works. I've asked them to consider 7% saline as think can do this before physio then GSH after.
I was thinking today what has changed? And was a moment of clarity is she getting enough gsh? So switched to the mouthpiece. We use a e flow which is an aerosol nebuliser, the flow is quick so another reason for mask. But she did half with mouthpiece and there it was lots of clearance.
Growth still steady.
So that's where we are at. Just think if you hadn't had started the Cf community on the GSH path my daughter would probably be close to being a statistic.
There's not many people who walk this earth who dedicate their time to a cause like you have. You would have changed many people's lives with your strength and the fact that you didn't stop just when your sons had GSH but went further is a credit to yourself.
Responses