Most of the children who suffer from an eosinophilic gastrointestinal disorder cannot eat a normal diet. They live with severe food restrictions, or are tube fed which makes it hard on physical, emotional and social levels.
The festive season can be an especially hard time for them, as many are not able to eat like their friends and family at the many Christmas parties and celebrations, nor can they experience a real Christmas dinner.
This Christmas ausEE Inc. launches its Christmas Appeal to raise funds for medical research into eosinophilic gastrointestinal disorders, with the goal to change the future for children, like Henry, suffering from these life altering disorders.
Here is Henry’s Story…
Looking back, I can see that my son’s pain started the day after he was born. He screamed all day and all night. Constantly.
Only being a few days old, the consensus was that he had colic, was hungry and had wind and was all normal for a newborn. I honestly looked at this child screaming and thought this can’t be normal, but what did I know being a first time mother?
After we took Henry home, the screaming continued. I was assured by many that he was healthy and growing so that nothing could be wrong with him. It persevered. Day in and day out of eardrum piercing screams.
6 weeks into his life, I felt like a shattered woman. Completely sleep deprived and without any answers as to why my beautiful little angel was so unhappy. Still, at this point, no one was really worried as he continued to grow…especially since he breastfed every 2 hours day and night. I was showed settling techniques from wrapping to rocking to letting him cry. Nothing seemed right and nothing worked.
3 months into his life our paediatrician put him on reflux medicine as he had a suspicion that Henry had “silent reflux”. This did nothing. We increased the dose. Nothing. We tried a new reflux medicine. Nothing. Finally we decided to take dairy out of my diet and Henry started to have some peace during the day, but the screaming at night continued with a vengeance. At this point I was lucky to get 2 hours of sleep a night…and it was only going to get worse. But our paed could see that this was in some way related to food. So we trialled many things with little success, but in the end it’s what led us down the right path.
At 6 months, we introduced solids. We were told by so many that maybe he just needed to eat. New symptoms arose, Henry had begun to claw at his chest and his poo began to eat through his skin causing burns and blood on his bottom. We frequently had to dress his wounds on his chest from his claw marks. Seeing our child like this was absolutely heartbreaking, we just didn’t know what to do, except not give up.
8 months into his life and everything was at its breaking point. Our paed could see that I was getting close to no longer being able to look after my child due to severe sleep deprivation and admitted us to hospital for a week. The intention was for Henry to be weaned off breast milk, and for the nurses to care for Henry at night while I slept. Because the formula tasted unpleasant, Henry stopped eating for 4 days and was in danger of having a feeding tube inserted. During these 4 days, Henry slept better and we thought we had figured out that it was something in my milk.
After we got home, and he started eating and drinking, the screaming and scratching continued. We continued to try reflux medicines and see all sorts of doctors from homeopaths to specialists and still nothing. Still screaming all night.
I think the true turning point for us was when we completed a sleep study. The hospital recorded Henry waking an average of 30 times an hour. We immediately were referred to a gastroenterologist paediatrician who ordered the endoscope and finally at one year of age, Henry was diagnosed with an eosinophilic gastrointestinal disorder – eosinophilic oEsophagitis. This was the end of a long journey, but the beginning of a much longer one. Not one without pain, but one with some answers and a lot of hope that someday someone will find an answer to this dreadful disease and our children who suffer will no longer feel sick, simply from eating.
ausEE Inc.’s mission is to improve lives, like Henry’s. With your help, we can make a difference.
Please visit www.ausee.org today.