My daughter was diagnosed with Eosinophilic Gastroenterocolitis in 2008, and has been tube fed since January 2010.
Evie was born December, 2003. Evie cried constantly night and day. I was told it was because she was in shock, then she wanted my attention…the reasons went on. She was born a healthy 7lb 12oz, but at 6 weeks was 6 pounds, she wasn’t feeding well, and was frequently sick. I was told it was normal for breastfed babies to lose weight and to go home and carry on. At 4 months, I went to our health visitor and Evie was still only 8 pounds, and I cried and said I couldn’t do it anymore. By now Evie was also covered in eczema.
My health visitor took us to the hospital where they admitted Evie with dehydration, and we spent the next 5 days there. They decided she had a dairy allergy and reflux. We were given a special formula and 3 types of medication. From there, we spent countless overnight stays in hospital averaging at least twice a month, with one infection or bug after another. Evie had constant sickness and diarrhea, failing to gain weight, and using up to 20 nappies a day.
Evie refused to eat or feed, and the crying continued. A life of constant hospital visits began, but we never got any answers. I was told I was over-anxious, and that I didn’t know how to feed Evie, even while her older sister thrived. They questioned whether I was even bothering to feed Evie. I was sent a nursery nurse to teach me how to feed and play with her.
The final straw came when Evie was 4 and still wearing 18-24 month clothes, and still having daily sickness and diarrhea. The consultant wanted to refer me as she felt I had Munchausen-by-proxy. Angry and devastated, I wanted a second opinion. Two weeks later we saw a different consultant who looked at Evie’s notes and results of a test performed on that first hospital admission at 4 months, and we were admitted to Great Ormond Street Hospital, where they performed an endoscopy and colonoscopy (camera down her throat into her stomach and up her bottom into her bowel and colon). It was then that we found out she had a rare autoimmune disease that was attacking her digestive system. Food was making her ill – not me.
From there, we have learnt to adapt Evie’s and our life. Evie has tried numerous medicines, and 2 years ago in January the drastic decision to remove food altogether from Evie was taken. She had a nasal tube inserted, and began a diet of formula only. The formula is an elemental feed, which is free from everything apart from her vitamins and minerals. This was supposed to be a 6-week thing to reduce the inflammation in her digestive system, but Evie responded so well the diet continued. After 8 weeks we started trialing one food a week, but many foods failed.
Two years down the line she remains dairy, wheat/gluten, nut, sesame, strawberry & pork free. She still has food phobias and has no real interest in eating orally. She is still tube fed, but has a permanent feeding tube straight into her stomach; she carries her formula around in a backpack with a pump. She is now on 10 medicines a day, including immunosuppressants (low dose chemotherapy). We carry an Epi-Pen as she is anaphylactic to some foods, and has other environmental allergies: multiple pollens, cats, dogs, house dust mite and more.
General info: Evie’s condition is an autoimmune disorder, and also causes other illnesses as well: reflux, eczema, asthma, hayfever, multiple food and environmental allergies, a heart murmur and benign hypermobility syndrome.
Evie has a very low energy level and frequently uses a wheelchair when out, she suffers daily headaches, tummyaches, sickness and joint pain. Sometimes she can’t walk and can still go to the toilet up to 15 times a day. She has physio, occupational therapy, is under a gastroenterologist, rheumatologist, neurologist and detitian. We have frequent hospital visits, some planned and many not! Every day has to be planned out around what Evie can eat, medicines (4 times a day), when her feeds are due, what activities she can do, and where the nearest toilet is.
Life with a chronic illness can be hard work and upsetting but it can also be a joy. We have met people we wouldn’t have. We have learnt the small things in life are important. Evie loves all the things her peers do, she just has to do things differently or at a slower pace.