Our daughter was born in May 1995. She needed oxygen and had to be ventilated. Finally, we took her home in mid July and she seemed to be well. Then in January, she developed an infection which meant she had to go back into hospital and go on oxygen
Then, the bombshell: a consultant told us she had congenital alveolar proteinosis and had, maybe, six months to live "but we'll give her some treatment and see how we get on".
The treatment was appalling and, as we discovered later, unnecessary. At all of 14 months, she was put on daily doses of dexamethasone, azathiorpine, budesonide, domperidone, ranitidine, cisapride, and nystatin, and cotrimoxazole three times a week. Later, chloroquine and gaviscon were added. (She had already had eight different types of antibiotics along with loads of other "just in case" drugs.)
She screamed day and night, became huge overnight and ate constantly. I looked at her one morning and realized if I did not do something, she would not make it. I started doing my own research. I discovered the original diagnosis was wrong: tests showed she had two elements missing in her essential fatty acid production and was lactose intolerant. One by one we found an alternative to the drugs. We now use aromatherapy oils to fight the inflammation in her lungs (no more nebulizers or steroids); acidophilus (to replace the gut flora destroyed by all the antibiotics); coenzyme Q10, herbs to detoxify and repair damage done by infections; lactose free milk; and supplements to replace her missing essential fatty acids.
She is now doing very well and really getting better daily. I challenge the doctors who treated her to come up with just one patient who got well on the cocktails of drugs they administered to our daughter. MS, Banstead, Surrey.