“Having a child with ASD – Autism Spectrum Disorder / Aspergers doesn’t make me an expert however I am always willing to share what works for us. My beautiful boy (BB) works harder than me each day to overcome the difference between himself and his peers. Currently BB is 9 years of age and has an aspergers diagnosis from a pediatrician and we hope that by sharing our story you will connect with our journey and find some wisdom.”
Part 1 found here.
At about 6 weeks of age my beautiful boy (BB) started to have the worst dark green, mucus diarrhoea. BB was a slow weight gain baby and now he stopped putting on weight and was thin and pale. My GP referred us to a Paediatrician whom after some tests diagnosed BB with primary lactose intolerance.
We were advised to start BB immediately on a special baby formula and BB was on daily check ups. If BB didn’t improve within the first 48 hours we were to be prepared for a lengthy stay in a major hospital, located an hour away. At that point I kept asking and was reassured by the Paediatrician that breastfeeding could be reintroduced after BB digestive system had a chance to heal.
Having introduced formula to my baby meant that I had to express my breast milk. My body was extremely stressed and in pain I could not for the life of me express one drop. All my attempts over two days were futile and after many calls to the Australia Breastfeeding Association help line and a does of mastitis I was finally able to express.
For the next two weeks my BB was bottle fed and I expressed my milk with the hope that I could reintroduce breastfeeding. Finally the day had come where I had permission from the Paediatrician to try breastfeeding again, feeding from one breast per feed. To my horror BB immediately started to have diarrhoea again, in tears I asked the Paediatrician what I could do to breastfeed my child. The Paediatrician did some research and came up with a plan, if I could eliminate all dairy, sugar, wheat, carbs and fruit from my diet my son might be able to tolerate my breast milk.
Starting the third week of bottle feeding I eliminated all diary, sugar, wheat, carbs and fruit from my diet by the middle of the week the Paediatrician suggested that I try with BB having only one feed of breast milk a day and slowly added more breast feeds each day. Finally we had success, however he still had green poos occasionally and at 9 weeks old, cried all the time.
By now the Paediatrician and I were on first name terms and he would call me at home to get daily updates and I would visit his clinic in every other day. The Paediatrician had done further research and found that in North America there was a similar case similar to ours and the infant was able to tolerate breast milk when the mother introduced pureed chicken and vegetables. He recommended that I try using only organic chicken and vegetables, offering a couple of spoonfuls prior to breastfeeding as this would be soothing to BB stomach and bowel if this was digested first.
Finally by 11 weeks of age my son was fully breastfed again and I had overcome severe mastitis, block milk ducts, nipple confusion and also had become very creative with food on my very strict diet. At this point the Paediatrician got a little cranky at me because he was going to have to change BB’s diagnosis.
At our last appointment with the Paediatrician I asked him why he sounded upset the last time we spoke on the phone? He went onto explain that he never known of a baby who was severely lactose intolerant to be successfully breastfed. He has never known of a case like ours and although he knew my gaol and the reasoning behind it, he personally had never seen anyone take the steps I did. He changed his diagnosis from primary lactose intolerance to secondary lactose intolerance.
Why was I determined to breastfeed? It is medically proven that breastfed babies are more likely to out grow their allergies, grow up smarter etc. I believe that my body could make milk that was the perfect balance of protein, fat, carbohydrates and minerals for BB.
BB continues to live with many allergies, thankfully his body has built up a tolerance to lactose and when he is retested every 2 years his body continues to building up tolerance to his other allergies. He is in the very rare 5% of children who will out grow their allergies (the exception is nut allergy). This I believe due to his breastfeeding during his formative years.
It was really tough and some days it took all my strength to get through the day, survive the night and find renewed hope in the morning to get through another day with a sick baby.
My cheer squad to keep going were friends I made through the Australian Breastfeeding Association and BB’s father. The sacrifices in regards to my strict diet and over coming my breastfeeding obstacles have been rewarded with long term health gains for both of my children.
My Darling Daughter (DD) was born with the same intolerance to lactose and I had to go through the whole experience twice. Meaning I had to live on a very strict diet for 12 months when my DD was born and I cried big gulping tears when her poos turned dark green, which was a sign she too had primary lactose intolerance. I recall visiting my GP each week to have her weighted, and crying hard about living on nothing short of roast meat and vegetables.
Thankfully both children have grown up healthy and above average intelligence and all those sacrifices were worth it.