Two children with gut problems

Hi

My name is Helen. I am 35, married to Paul and have 2 children. Izzy is 4 and Ben is 3.

Izzy was born at full term after interuterine insemmination. She had been a twin pregnancy but we lost her brother or sister at about 12 weeks. That is probably the reason she was classed as IUGR or interuterine growth retarded as she was under 2.5kg

We had problems from birth with constant screaming and vomiting. At 4 months she was seen by a paediatrician who put her on nalcrom and motilium and suggested I went on a diary free diet if I wanted to keep feeding her myself. I did for the next 3 months. As things didn't improve she her diet was further restricted and she remains on an egg, wheat, dairy and soya free diet. Attempts to reintroduce foods have failed so far.

She had upper and lower endoscopies jan 08. Her duodenum had lymphonodular hyperplasis but her biopsies came back clear. She is now labelled as having slow transit allergic constipation and multiple food allergies. She still gets tummy ache on a daily basis but we've resisted our drs suggestion to cut even more out of her diet.

She takes nalcrom 3x a day, cetrizine 2x aday, ketotifen once a day and calcium and vitamin supplements. A recent bone age scan but her 8 months behind her chronological age. At nearly 5 she is currently wearing age 2-3 summer school dresses. So that is Izzy.

Ben was also conceived by fertilty treatment. I was induced at 37 weeks due to repeated bleeding in the pregnancy. Ben was bigger than Iz at 2.7kg but was slow to feed and his blood sugars were in his boots so the SCBU started syringing SMA into him. That was when the vomiting started and it continued until he was given steroids and sulfasalazine at 13 months.

Ben screamed or vomited constantly. He didn't sleep for more than half an hour at a time and we didn't get him to sleep in anything but a carseat til he was 6 months old. Luckily we already had a great paediatrician and she saw Ben at 3 weeks old. He had a pH study at 6 weeks but the computer didn't download the data and then a barium meal which showed relfux. I fed him on an egg, wheat, dairy, soya free diet with neocate formula to supplement my milk. He was 6 months before he was seen at GOSH at which point a useless registrar said he had behavioural problems. There was a catelogue of errors from her clinic letter and I put is a big complaint and we've not seen her since!

Ben was finally scoped at 11 months. It was at a time where you could watch which was very useful. Straight away you could see inflammation and when the scope got to his duodenum the structure was completely abnormal. His colon had lymphonodular hyperplasia throughout with no smooth muscle at all. I was relieved to see there was something wrong in a way.

The biopsies came back saying he had eosinophiic gastroeneropathy. SOmething I'd never heard of and still struggle to completely understand - as do the medics! He was much better after the steroids and sulfasalazine until xmas 07 and then he got a lot worse.

He had steroids in jan and feb 08 and then got rotavirus at the beginning of march. !2 days in hospital of hell and then home with an ng tube and reduced concentration neocate. He had already had allergic reactions to multiple foods and was then only eating free from toast, cereal, apple puree and mashed potato.

Things did not improve and he ate less and less. In the May GOSH started him on an immunosupressant, azathioprine which helped a lot. Unfortunately he developed bone marrow toxicity to it which continued even on a reduced dose and so was stopped.

During this time our consultant at GOSH used him as a case study and we were asked to make a dvd of life with this disease. It had a real impact on our dr as it showed him what severe levels of pain Ben can get which he hadn't apprecated before. He started him on amitriptyline used in higher doses for depression but in low doses for neuropathic pain.

In November we changed for azathioprine to methotrexate which is another immunosuppressant used as chemo in higher doses. His bone marrow is struggling a bit but not at dangerous levels yet.

In february he had a gastrostomy feeding tube in his stomach after a year with an ng tube. He finds it much better but we are having problems with gastric emptying. He is currently on 11 weeks of steroids to try and improve things and if not will need a jejunal extension to his peg to bypass his stomach. He is only eating a few cornflakes and free from biscuits by mouth.

He is on nalcrom 3x aday, sulfasalzine 2x aday, lansoprazole once a day, ketotifen 2x aday, singulair once a day, amitriptyline once a day, methotrexate injections once a week, folic acid day 4-7 after the methotrexate and neocate elemental formula at 12.5% concentration. SO that is Ben.

Sorry for such a long introduction. Well done if you've got to the end!

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