EOE: Hi can anybody offer advice please? My 12 year... - FABED

FABED

EOE

jami1
jami1

Hi can anybody offer advice please? My 12 year old son has been diagnosed with Eosinophilic esophagitis (EOE) in November 2019 after having an endoscopy. He had struggled with symptoms of heaving, burping, and stomach pain leading to spitting up and sickness (especially at night) since July 2019. Once diagnosed our consultant has prescibed omeprazole, and budesonide (mixed with Splenda) both twice a day. His symptoms are still continuing 'along' now with on/off headaches and dizziness, of which his consultant can not confirm whether it is side effects from one of the medicines, or the recurring and possibly additional symptoms of the condition. He has been on different meds and higher and lower doses to see what works, and nothing seems to control it. We started him on a diary free diet only 1 week ago, (his consultants advice), which doesn't seem to be helping as yet. We feel very much 'in the dark' as we have found it incredibly difficult to get hold of and gain help or answers from his consultant in the past weeks. It is very frustrating and upsetting. In 2015 my son was also treated for a brain tumour along with chemotherapy and radiotherapy, his life has been a constant battle and after the surgery to the brain tumour he has had to learn to do absolutely everything again, from speaking, eating, moving and walking. After years of daily physiotherapy, occupational therapy etc, he is now taking steps on his own. He missed 18 months of school during his cancer treatment and has missed 4 months up until now, while suffering with EOE. Im finding it very difficult to stay positive and would appreciate any advice at all from anybody who's child may be recovering from this or is suffering similarly. Thank you