Hi Katie

My name is Helen and I am the mum that Kitty mentioned in her post.

I am so sorry to hear what a rough time you've been having and if there is anything I can do to help then I will.

My son Ben has EGID and it was his duodenum that was the worst. We have just been in GOS for a week and we were told that the eos in the duodenum cause the most pain and problems.

Ben had an ng for a year and we changed to a peg in february. It was the best thing we could have done. There are a number of reasons why long term ng use isn't good and if there is no chance of Orla meeting her calorie needs orally then I would think a gastrostomy would be a good way to go.

If you take a look on GOS website under their clinical guidelines it talks about ng tubes and gsatrostomies and it also has a printable leaflet under the infromation for parents/children secttion on living with gastrostomies. Both were very helpful to us.

We found that Addenbrookes website do a great leaflet explaining pegs. I would suggest you read up what you can on it and go to Dr E with an idea if it is something you want or not and push your point either way.

Ben was older than Orla when he got his ng, he was 2. As he got towards 3 he was more conscious of it, got more distressed having it changed and his skin broke down on his face from the tape. The other thing that can happen with prolonged use is it can wear down the nasal bones. Ideally ngs are not used for longer than 3 months though we had it a year and I know someone who had one for 3 years.

All enteral feeding has it problems. Ben is now jejunally fed due to gastric emtpying issues. There are risks of placement (we had interventional radiology and it was fine), infections etc but there are problems with ngs too. Nothing is ideal but it is weighing it all up.

With regards to hereditary we have been told there is a familiar link with subsequent children getting it worse than the first (that is true for us) but it isn't a clear picture. If you join fabed.co.uk (families affected by eosinophilic disorders) you will see a recent discussion on it.

If you would prefer a more private discussion then feel free to email me at helenjanebateman@yahoo.com. It is so hard dealing with EGID but I find that being as informed as I can helps.

Take care and good luck with Dr E.

Helen