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Refractory Sprue

GlutenWrangler

By GlutenWrangler
in Coping with Celiac Disease

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Guest celiac mum
Guest celiac mum
Posted

I'm so sorry to hear about your kidney and I wish you all the best . Its such a touch illness to grasp, well i find it difficult .

My children are not so good my 5 yr old daughter has been nil by mouth for 13 months now and is feed via a gastrostomy tube for 17hours a day , she too is on immunesuppresion and steriod tretament but at the moment there is no change in symptons or biopsy results , losing paitents with English doctors as they don'y have any answers,

I'm sure we will get that

Good luck to you I suppose I can understand in a way how you are feeling

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GlutenWrangler Contributor
GlutenWrangler
Posted
  • Author

It must be very difficult for you to watch your children deal with their illness. I can only imagine what it is like to have to watch your kids suffer. I'm sorry to hear that your daughter's treatment has not worked so far. I can understand how you are losing patience with doctors. It can be so frustrating dealing with them sometimes. But I sincerely hope you can find a doctor that can help.

How are your children dealing with being so ill? Well I wish you and your children the best as well. Thanks,

-Brian

ryebaby0 Enthusiast
ryebaby0
Posted

Have you tried contacting Johns Hopkins pediatric GI department here in the states? They've done groundbreaking work with celiac/refractory sprue/ autoimmune enteropathy. You can actually email them to see if they would be interested in your children's case

Guest celiac mum
Guest celiac mum
Posted

That could be really interesting and helpful how would I go about that being in England.

I am getting frustrated with the doctors here and have been advised by lots of family to seek a second oppinion or advice

Thank you

GlutenWrangler Contributor
GlutenWrangler
Posted
  • Author

You would have to somehow bring your children to the USA so that they could be evaluated. You could contact Johns Hopkins, explain your situation, and see if they could accommodate your children. You could fly here during the 7 hours when your daughter isn't hooked up to the gastrostomy tube, and then when it's time for her to hook back up, you'll be at Johns Hopkins. I know it seems daunting, but it may be the change that your children need.

-Brian

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