things we learnt to make life easier
Firstly I realise each child is an individual and what works for one may not for another!
Constipation problem was managed in the first years with prune juice added to her cereal then aged 3 we used milk of magnesia altering dose to need and age 5 in addition to milk of magnesia she had one to two teaspoons of duphalac syrup daily. It took us a long time to realise that a lot of her vomiting was due to constipation.
Melissa was seldom bathed in the first year of her life due to getting cold so easily and tiring her unnecessarily. We would top and tail her and use little water on her skin which becomes rougher with water, instead we oiled her with cold pressed safflower oil.
We kept her away from unwell people if possible. We were advised by her Paediatrician not to immunise. When she became upset and cried - this led to congestion causing her to choke which ended in vomiting though improving with age.
In hot weather i.e. out in car Melissa would overheat. We used panadol suppositories instead of medicine. When she got a cold she was put on amoxil antibiotic as a precaution against secondary infection.
In the first years of her life we found it important to carry a letter outlining her condition so that in the event of seeing different a doctor the particulars were written down saving a lot of time.
Melissa seemed unable to eat our food even when moulied. She ate it quite happily but would vomit it up after so we used prepared tinned and jars of baby food. Expensive but worked!
Her milk was ready to feed Isomil soy protein formula with iron. We fed her two hourly throughout the day - she could not drink liquid she was spoon fed the milk.
Melissa was unable to go outside in the daylight as this air and light caused a sneezing reaction resulting in congestion. Her playroom was protected by blinds which channelled the light away from her. In a strong glare she shut her eyes. Dark glasses were used from 1 to 3 years old but not very successful. Our car had darkened windows that also helped keep it cooler. To avoid problems we did not have Melissa in a room with open doors / windows. Outside activities therefore were difficult a covered pushchair was made for her so we went for evening walks. Overheating could occur in both the car seat and pushchair/wheelchair.
Bringing up wind was a real problem and caused a lot of vomiting though this improved with age. Force feeding would end in vomiting. Melissa had to be kept upright after feeding.
Those are some of our challenges and how we managed them.