I am RB, a 40-something busy Mum of 2 and full-time accountant for a local charity. Both children were born prematurely, but my second pregnancy was hard-going from the very start.
In 2011, after 5 years of battling with our local health authority, we finally got a referral to Great Ormond Street Hospital (GOSH) and discovered the challenging world of a rare inflammatory bowel disease (EGID) and multiple food allergies. The journey has been long and stressful and there is no sign of it easing in the near future.
If I am able to speak to the heart of even one parent who is going through the same turmoils, then I know the hard work will have been worth it!
These days we are big supporters and fundraisers for the incredible charity, Over The Wall, who have supported both children through their fantastic siblings and health challenges camps.
This blog has been inspired by, not only our search for an answer to M’s condition, but also my good friend and fellow blogger, theunderstudypancreas http://theunderstudypancreas.wordpress.com/
I saw a comment you left regarding Frank bars on http://freefromfairy.blogspot.co.uk/2013/06/fabulous-frank-bars.html. I work for Frank foods and happy to send you some bars to review – there might be some flavours you haven’t had yet 🙂
Drop me an email if of interest.
Definitely of interest, thanks Ben. Have sent an email with the salient details!
Just found your blog (via Twitter). It sounds as if we have similar situation. My youngest has an esinophilic gastric disorder and multiple food allergies. We are under gastroenterology at Bristol Children’s Hospital.
Well done for sharing your story. It helps to know we are not alone.
We are currently seeking an egid diagnosis for our 7 year old. She sounds, in so many ways, very similar to your son. I love your blog.
Thank you so much, I hope you get some answers soon – do stay in touch and let me know how it goes. Rxxx
Hi. Still struggling with a whole family (4 kids) of allergic children. I can’t get anyone to see the big picture. Each child has slightly different symtoms so need to see different people. R had scopes a little while back that looked relatively ok so no one is interested in going any further with her. How and what did you say to who to get your gosh referral initially?
Hi Lisa, so sorry to hear that you’re still struggling to get any help with your children. We have a wonderfully sympathetic GP, who referred us to GOSH on a private referral and we were then able to move to our consultant’s NHS list after that first appointment. We simply said we were at our wits’ end and felt confident that there was something more wrong with M then we were being told by our local hospital. It got us into the system, but sadly at a cost. Hope that helps, but please let me know if you need anything more.
I luckily have 4 healthy children, but in my case, I’m the one riddled with several invisible chronic illnesses. My entire digestive system from top to bottom is diseased and that’s only a small part of my problems. I can’t even imagine any child ever having to go through this. I am so sorry. You’ve been added to my prayer list and I wish you the best and I hope that your little angels will one day be better. Take care and I wish you the best on your difficult journey.
Peace and hugs,
Thanks Tammy, we really appreciate the prayers. Much love to you and your family whilst you cope with your own health struggles x
You’re quite welcome and thank you for your kind words.:)
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Glad I found someone I can relate to I am now 20 and Dr’s have been looking for 3 years for the root of my stomach problem and multiple allergies
Hi, I really like your blog, I think I’ve seen your comments on my mums website: http://afeedersdigest.wordpress.com . I’ve just started my own blog on allergy free baking, please take a look! It’s called bellesbakingbonanza.wordpress.com
Lovely to hear from you and great to see you’re starting your own blog. Will be taking a look to see what recipes my 2 can use to bake themselves. Rx
Just found your blog…I was diagnosed with EGID last year, and what a turbulent journey it has been. Looking forward to reading about your experiences, thank you for writing about such a rare disease (I have been able to find so little information!). Take care xx
Keep fighting the good fight and all the best with you own battles with EGID. Stay in touch xx
At TUDiabetes.org we have a position open for a director of development. This is a chance to work in the diabetes space, and it involves some accounting – albeit it US accounting. We employ people in place so while it may not be a complete fit it might work. I just thought I would offer the lead.
Rick, that’s an amazing lead – thank you so much. I will take a look to see if I can find more info, but might come back to you if I can’t. Thank you so much