When J was born, in stead of breast feeding we had to switch to formula (=powdered baby milk) after about 5 weeks due to complications from the C-section and massive amounts of antibiotics for me. He was doing fine, weighed 8 kilos (17lbs.), till about 6 months old, when we changed to a different formula. He got sick: diarrhea, throwing up, many colds, sniffles etc. Doctors prescribed asthma meds and allergy meds. He started losing weight.
When he was a year old, (he was finally back to weighing 8 kilos again), I tried Soy Formula and he gained 2 kilos (4.4lbs) in one month. His airways cleared up, he was doing great again. I was able to stop all asthma and allergy medications. Suspecting food allergy (cow’s milk?) I was slow in adding regular foods. Probably when we substituted his soy milk for regular foods more and more, is when he started producing strange looking diapers (oily stools). Orange spots and weird looking stools. When looking that up on the internet I found CF coming up way too much for my taste. This led me to visit the pediatrician and he took a blood sample to have it tested for CF mutations and did a stool test for Giardia infection (which can also cause malabsorption). Before the blood test results came back, I was relieved to hear he had a Giardia infection, thinking it was not CF. However, a few weeks later, when visiting the pediatrician’s office again to check if the Giardia infection had cleared, he had received the test results for the CF mutations. Only one mutation showed up on that test (delF508) and the advice was: if no clinical presentation of CF it wasn’t necessary to do further testing. In the meantime I had read up on CF and still wasn’t sure he didn’t have it. He tasted very salty. Sweat crystals were in his side burns after playing (we lived in Aruba at that time, and it is extremely hot there). It looked like sand, but it were salt crystals. The pediatrician thought it wasn’t necessary to do further testing, but I wasn’t sure… Since a sweat test cannot be done in Aruba, we made an appointment in Miami Children’s Hospital. And that’s where we heard J had CF.
So what stood out in that history was the time J was on soy formula….(Nutrilon brand). I wondered what was in there that had made him gain so much weight and kept him healthy. When I read about Genistein and CF, it was pretty clear to me that that must have been what had been working for him, and that’s why I started giving Genistein.
I did also try to find out why he was okay the first 6 months. He was on Nestle Good Start at that time (my husband chose that one because the can looked nice!), but I have never been able to find out why J was doing well on that particular formula.
When researching CF, I pretty soon bumped into the possible benefits of Curcumin for CF. Noticing it was considered a very safe supplement, I started giving it to him hoping it would help him somehow and thinking if it wouldn’t help, at least it wouldn’t hurt.
Every day he got his Curcumin, we mixed it through the applesauce with which we give enzymes. He did not love the taste of it. One day he fell himself a concussion. He felt really bad (poor kid) and didn’t want his orange applesauce, so I had to give enzymes without it. The next day he had horrible diarrhea. They said it could have been from the concussion, so I wasn’t sure it was because of not giving Curcumin.
However in the summer of 2012, the Curcumin manufacturer changed the packaging and without noticing, I’d ordered the wrong Curcumin (without piperine). J’s stools were bad…. We didn’t know what was going on…. Trying all kinds of different things for weeks without results, even going up on Creon didn’t help and we ended up giving a second capsule of Curcumin and stools improved. One morning three months later (I know… embarrassing!) it finally hit me…. Staring at the bottle I suddenly noticed: we had been using Curcumin WITHOUT piperine…!
As soon as we went back to using Curcumin WITH piperine, things improved tremendously! Now feeling sure it was doing great things for him we stuck to 2 capsules a day. He did develop a cough during that time…. A wet cough…. Which had me panicked, because the last time he had had a cough like that it was a Pseudomonas infection… We waited it out a little, but ended up giving antibiotics after 2 or 3 weeks of coughing and the cough cleared. Don’t know if it was a coincidence in timing of things, or if he did actually pick up something bad during the months he wasn’t using Curcumin with piperine, but when other users of Curcumin & Genistein started reporting a wet cough, I remembered what happened with J….
Of course we now know that with every dose increase we hear that ‘typical wet cough’. Probably caused by better hydration of the lungs and lungs ‘settling into a new balance’ of better functioning CFTR. We now also know that the ‘wet cough’ disappears after a few days or weeks, depending on the amount with which the supplements are increased, or the amount of ‘old mucus’ that has to be cleared from the lungs.
So that is how I knew for sure both supplements were working. I did not realize about the synergistic potentiating effect. I did read the particular full article by TC Hwang when it was first published…. I was excited finding something to back up what we saw happening in real life. Coincidently, it was published in the European Journal of Cystic Fibrosis, the only CF journal I had a subscription to.
Of course that was about the G551D mutation and not S1251N. But by that time I had done enough research on S1251N to know that the defect in both mutations was very similar and that it was likely that whatever could fix G551D would work for S1251N as well.
That’s also the article I remembered reading when J’s cells were tested with Curcumin and Genistein and that’s how we knew what we were seeing in those ‘ex vivo’ tests.