Hi, I am the mum of a little girl called Orla who is 1 next week. We received the news this week that Orla has ED which has been a lot to take in as we thought we have been dealing with severe reflux up until now.
It's been a hellish year with test after test with frustratingly no results until now. Orla vomits all the time, she gags and retches bright yellow stomach bile and has had an NG tube since birth - she is very underweight. She won't eat a thing orally and is on all the reflux meds plus various anti-histamines. Nothing is really working and this week she has been worse than ever.
We are seeing Dr Elawad at GOSH and have another appointment in 3 weeks where I think he will start her on steroids. We are also facing the decision on whether or not to go for the gastrostomy. Any thoughts/advice/experience on that would be appreciated.
It's such a horrible condition isn't it. Do you know if it's hereditry? We would love another child but I am terrified of this happening again.
Look forward to hearing from some of you who are also suffering with this. Hope we can help and support each other.
katie
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Hi Katie
I am so sorry to hear what an awful time you've had. I'm sorry to say that most of us families with children with EGID had a long hard fight to diagnosis too. It's awful.
I have 2 boys with EGID and it took me 4 years to get to the bottom of what was making my eldest so ill. LIke you, we saw lots of consultants, had lots of tests, i used to cry my eyes out to doctors and still got nowhere. My youngest also has it and it wasn't till he was 2 that we finally got a diagnosis for him.
Anyway, last year we finally got sent to GOSH and they were able to help us and things have been improving a lot over the last year.
our eldest was like your daughter - projecile vomiting and crying in pain all the time. it was horrendous. He developed a food aversion so wouldn't eat or drink unless it was milk. This has improved a lot over the last few years - since we've been seeing hte Feeding Specialists at Great Ormond Street - have you been referred to them yet? They can help with food aversions and phobias.
OUr youngest is going through a fear of eating stage and it's really upsetting.
I think most kids end up having a course of steroids at some point. I am sure you are very worried about this. what other medication is she on? is she on a special formula now? we use neocate for our youngest.
There is another mum on Parentsown who's son has a gastronomy and she may be able to advise you - i will email her about your posting and see if she can offer you any advice.
re: the hereditary thing, a lot of families have more than 1 child with it and I asked Dr Shah at G.O.S.H last week about this and he said there is some hereditary factor and that you are more likely to have another child with it if you have a boy as they are more susceptible. He also said that second children can have it worse but this isn't the case for all families as some have a child with EGID then a healthy child.
Have you asked your consultant about the hereditary link?
I really hope things improve for you and your little one soon,
Kx
Hi Kitty<
Thanks for your reply. I am glad that there was some good news after your visit to GOSH. I just don't know how you cope with 2 children with this problem, i struggle so much with just one. Sorry that your youngest is having such a tough time - it's just so heart breaking isn't it. I would do anything to see Orla eat something and have a day with out vomiting. Did either of your 2 retch a lot? Orla retches yellow stomach bile which really upsets her and can wipe her out for hours.
The meds she is currently taking are Ranitadine, Domperidone, Certirizine, Nalcrom and Ondansetron. To be honest they aren't working at all so I am keen to start the steroids as I am desperate to see some improvement. She has been on Neocate since she was 3 months and has just moved onto Neocate active. Orla is still very underweight and hasn't yet doubled her birth weight. She's one next week and I am hoping we will have a good day.
Do you also see Dr Shah at GOSH? I seem to be the only person who doesn't see him? Do you know Dr Elawad? We are still seeing the dieticians and feeding specialists at Kingston hospital near to where we live and so far they have been quite good. Is there a long waiting list to see them at GOSH? Where do you live by the way?
We went to our first playgroup yesterday and it was tough as so many people stare at her with the NG tube and although I don't care I worry that she will feel self conscious.
Oh, there is so much to worry about isn't there.
Take care
Katie
Hiya
It's not so bad having two with EGID now they are improving but it was awful when they were young. I had them both screaming in pain, one vomiting, one with diarrhoea and both up all night. I was exhausted and no one could tell me what was wrong. My husband found it hard too as he couldnt get much sleep and still had to go to work. In his old job he travelled lots too so it was very hard for both of us.
Yes my eldest used to wretch a lot. He projectile vomited after and between feeds and he gagged on anything that wasn't milk. He regularly refused feeds and would get dehydrated. I used to feed him day and night constantly to try to get more back in.
You must be very worried that she is so underweight. Is she in pain? Is she seen regularly? Did she have an endoscopy/biopsy to confirm her EGID?
Everyone I know is seeing Dr Shah and i was told he is the EGID expert in the UK. I haven't heard of your consultant. You can access GOSH dieticians if u see a consultant there and u shouldn't have to wait. We saw them from our 1st referral to Dr Shah. They are much better than our local dietician was as she didnt' understand the condition or the complexities of it. She had our youngest on neocate active but when we saw the GOSH dietician she said some kids with EGID can't tolerate the active due to it's osmology so she put him back on normal neocate, with additional supplements, and his diarrhoea improved.
maybe it is worth getting their input too? YOu can usually get their advice over the phone so won't have to go up there. you can also request they meet you at your consultants clinic next time u have an appointment - this save you having separate appointments - they are always happy to do this.
i think the feeding specialists at GOSH do have a waiting list but i think they give initial assessments quite quickly and then prioritise their cases. the only thing is that sometimes they can't help till a child's condition is under control a bit as a child in pain is unlikely to want to eat even with their intervention. at least if u ask for a referral you'd be on their list and get an initial assessment?
I understand why a playgroup was hard. I barely went with my 2 for first few years as i had one vomiting everywhere, one with diarrhoea and both crying! Took me ages to feel brave enough to go - I think i felt quite lonely for a while, especially as we moved away from my friends and family just after my son was born! I am sure that if any of the mothers look at Orla then they will probably just really feel for you and wonder how to ask you about it.
We live in Wokingham, Berkshire. We used to live in Guildford, Surrey - not too far from kingston.
Are you a stay at home mum or are you working? I was lucky that I've been able to stay at home to look after the boys. I'd worry far to much too much to leave them.
I hope she has a lovely birthday!
Kx
Hi Katie
I just wondered how you were getting on? Has Dr Elawad suggested starting the steroids? Have you had to make a decision about changing her ng tube for a PEG?
I hope things have improved for you and that you all had a nice Christmas.
Kitty
Hi Kitty
Thank you for your email. We went away for Christmas (we bravely went to Australia to visit my brother!) amazingly all went well and although Orla had a couple of bad days, overall it was a great holiday.
I have also started back at work which has been a tough transition but it's going well and I am feeling a lot more like my old self again. Orla is being looked after by my mum 2 days and a nanny 2 days and then I am home on Friday so it's working well. We have made the decision to have the PEG and are just waiting for a date as we are on the waiting list. I'm still nervous but feel that's it's definitely the right thing to do. She hasn't started the steroids but I actually put a call into Dr Elawad today as I feel we should start them. She's better but still has some really bad days of puking and terrible bile.
Did you 2 experience any side effects from the steroids?
How are your 2 doing? How was your christmas?
ALl the best
Katie
Hi Katie
you lucky thing going to Australia!! really glad you had a good time. i am sure you really needed a break.
it's great that you are enjoying being back at work.
I completely understand why you have gone for the PEG, hopefully this will make it easier on all of you. I hope the waiting list isn't too long.
My son was okay on steroids but he was quite irritable and went off his food and didn't sleep well ... the thing is that I can't be sure it was the steroids as this happens when he's having a flare-up anyway. it could be that it just coincided with him being on the steroids.
We were told to be careful that we didn't expose him to chicken pox whilst he was on the steroids so I did limit going to busy playgroups etc till he finished them.
My two are okay thanks. My eldest is doing brilliantly. My youngest is still hit and miss - but still much better than he was. His eating has improved but I'm nervous his eating will deteriorate again if he chokes badly again. He hasn't choked as much lately so this is good. It's just that they aren't sure if his choking could be due to some inflammation in his oesophagus caused by the EGID... or if it could be something else. The only way to check is to do an endoscope/biopsy but my husband and I really don't want him to have this done. Has Orla had it done? Was it upsetting for her? Did you have to stay in hospital overnight?
Anyway, I hope things improve for you soon,
Kitty
Hi Kitty
I am glad that things are improving for you and that your 2 are better. How old are they now? Orla has had a endoscopy and biopsy and although it was a worry it was very, very straight forward. We arrived at GOSH at about 10am and we were home by 6pm that evening. She recovered brilliantly from the general and was smiling and energetic the minute she woke up. The worst bit is when they put the canula in their hand.
We are getting frustrated with Dr Elawad again as he just doesn't return any of my calls and Orla has been quite unwell this week and retching and vomiting lots of bile too. I am keen to get the steriods started but am frustrated by his lack of concern. Are there similarly long waiting lists for Dr Shah? I am still thinking of switching consultants.
How long did your little one take steroids for and did he only have them once?
Our nanny called in sick this morning so it's been a fun week of juggling work and childcare! Oh I can't wait for the weekend!!
Katie
Hi
my two are aged 3 and 5.
thanks for reassuring me about the endoscopy. i think we are going to wait and see how it goes over next few months, the choking has got better in the last year and may continue to get better (fingers crossed!).
i understand your frustration. My experience of Dr Shah has been fantastic. He returns calls very quickly (usually same day) and he responds to letters/faxes. I dont know exactly how long the waiting list is because we paid to go privately the first few times whilst we waited for our name to come to top of the NHS waiting list. We got a private appointment within about 2 weeks. I can't remember how much it cost but it was money well spent! His private clinic is held at GOSH in the private wing.
We'd struggled for years, but as soon as we met Dr Shah he was supportive and knew what was wrong with the boys - what a relief. Things have kept getting better ever since so I am very grateful to him.
If you want to switch then i'd give it a go. From what I've been told Dr Shah is the top guy in this area.
My youngest only had the steroids once when he had a bad flare up. He took them for a week. We've avoided them since just because he was unsettled and unhappy on them (but like i said, that could have been coincidence!). He had a flare up last week but it seems to be settled down again.
I'm glad it's weekend tomorrow too! Off to my mums with the boys, for some rest!
take care,
Kitty
Hi Kitty
How are you doing? how are your kids? Well Orla has now had her Gastrostomy and so far she's doing really well. The op was fairly traumatic but she recovered very quickly and already I am so glad that she we did it. she looks so lovely with out the tube down her nose and tape on her face. We have started overnight feeding too which is going well and means that we can go to bed earlier! They also did another endoscopy and found that the inflamation had reduced so don't feel that she needs to go on the steroids now which is great news. So all in all things are going well. She still won't eat a thing orally but one step at a time!
Hope all is good with you
Katie
Hiya
I am so glad to hear the operation went well. It's fantastic that she is improving. Must have been very stressful for you though.
Our eldest is doing really well thanks. Not so sure about our youngest though. He is suffering badly with joint pains - his knees and ankles hurt a lot -especially at night. We are finally seeing a physio next week to see if they can arrange some hydro for him. Does Orla get this symptom too?
He isn't eating well still either and gets very stressed around food. He gets so angry when it's time to eat and I can't work out what the matter is. we are waiting for another referral for a feeding assessment to see if they can help him want to eat more. The feeding team are concerned that his eating problems may be because he's still uncomfortable and that without treating the discomfort he's not going to want to eat anythign other than the foods he feels safe with - which are dried cereal and crisps as the moment.
Will Orla get referred to the feeding team at gosh?
glad she is doing better,
Kitty
Hi Katie, I have not been on here for a while but i was reading your post, we have three children with ee,ec,and ed and we are also seen by dr e. our two boys have gastrostomy's and are on a multitude of drugs and our daughter is on a very restricted diet and on all sorts of drugs, our children are aged 13,10 and 9. We have been with dr e since our 13 yr old was 2.
all the best,
Michelle mum to 3
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
Hello Helen,
Thank you so much for your reply. I hope that you are having an OK week. Orla had a bad flare up this morning and retched so much bile we had to change the sheets on our bed. It knocked her out so much that she slept for 2 hours. Did either of your 2 have this?
Thank you for the PEG advice. I think it's unlikely that Orla will take sufficient calories orally for a while so it's a route I think we will go down at some point soon. It does seem like such a big step though and seems so much more permanant that the NG.
Did either of your 2 have any reactions to the steroids? It's likely we are going to start these in 2 weeks and I am really hoping for some improvement. The antihistamines haven't worked at all. Have either of yours taken Ondansetron which is supposed to stop vomiting? Orla has this and I really don't think it makes much difference.
Anyway, sorry for all the questions. I live in new malden near kingston do you ever meet up with other parents who have children with EGID?
Thanks
Katie
Hi,
I have a 13 year old daughter and I am convinced she has EGID. She was seen by a consultant when she was four and was diagnosed with stomach migraine and had several admissions for dehydration due to vomitting etc. In April last year she had a very bad episode and had another spell in hospital with vomitting and excrutiating pain with her eosiniphil levels being extremely high. After several months of retaking her bloods and these still being high she was referred to a paedatric gasto consultant who repeated her bloods with a IGE of 4500 and eosiniphils still very high too. She had biopsies taken which showed she had eopsiniphils in all eight biopsies taken and also inflammation on her gullet but they are convinced she has a food allergy. Despite skin prick tests all being negative which had now been through eleminating wheat, gluten, milk and soya but she is still in pain. They have now put her on a cocktail of drugs including steroids and one for asthma (despite her not having asthma). The next step is for her to be admitted again and to have E028.
I also note that she parents were commenting that their children have joint pain which my daughter has in her knees which has just been fobbed off.
I was just wondering how your children were diagnosed and whether what I have described sounds like EGID.
Debbie
Hi Debbie
So sorry to hear what a tricky time you have been having. It really sounds like it could be EGID to me but i'm no expert.
My 2 boys had vomiting, diarrhoea, stomach pain, joint pains, reflux etc. They were diagnosed on the basis of their symptoms and because treatment helped a lot. Most kids seem to be diagnosed on basis of biopsies - why couldn't they give u a firm diagnosis after finding eosinophils on her biopsy?
Are you seeing a local consultant or are you now seeing a gut specialist?
Most of us are seen at Great Ormond Street. There is an excellent consultant there called Dr Neil Shah and he treats lots of kids with EGID. I asked my local consultant for a referral to him for a second opinion and it was the best thing i've ever done as things have improved so much since seeing him!
How long has your daughter been ill for?
My eldest had food allergy testing done and it was all negative but we know through diet elimination that he can't have dairy, soya, egg so i don't think they are very reliable tests.
I really hope you can get more help and support. Must be a big worry for you.
Kitty
Hi Debbie, the only way egid can be diagnosed is by biopsies and scopes, but from your discription i would say it sounds as if your daughter has egid. My three were all diagnosed at an early age although we were told for a long time that they had crohn's. My son runs a eosinophilic teens yahoo group if your daughter is intrested. The two boys are both tube fed and are on eo28 extra unflavoured.
I am guessing your daughter is on nalcrom, singleair (montlukest) maybe sulfasalazine or pentasa prednisolone etc.
If you want to have a chat you can contact me on shellstevelucas@tesco.net.
all the best,
michelle mum to 3