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#13464 - 02/08/07 10:27 AM Eosinophilic oesophagitis anyone???
Francesca Offline
Member

Registered: 01/16/06
Posts: 94
Loc: Brisbane, Australia
Thanks to today's endoscopy, it appears that Lucia(NS) has major inflammation of her oesophagus and is obviously having an allergic reaction, apparently! It is usually associated with food and the treatment is an 'elemental formula', which we are already currently using(and have been for over 1yr), smelly Elecare! She doesn't eat anything orally either, so it's all a bit of a mystery....

Has anyone else experienced the above and if so, can you share your treatments?
We had susupected that this wasn't NS related, but now the gastro believes there to be a major link, despite being very little written about the 2 conditions together.

Any thoughts or advice would be much appreciated, thanks.

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#13465 - 02/08/07 11:23 AM Re: Eosinophilic oesophagitis anyone???
Chrissie Offline
Member

Registered: 07/20/06
Posts: 122
Loc: The Gap, Brisbane, Qld Austral...
Hi Francesca
I have been reading up about it and it would seem that it is worth treating early, to avoid further complications. I see they suggest a biopsy, was that done? I note allergy maybe one of the causes but there are other causes.

I did wonder if the vomitting caused the condition or if it was there in the first place and aggravated. I am sure you will have considered all of this but just a suggestion.

I am reluctant to suggest anything medical, have you searched the net or will I ask at RBH?

If you can think of anything I can do or get for you PLEASE ask. I am back to work tomorrow and on for 4 days. Mobile will be on silent but you can sms and I will answer asap.

Please do not hesitate to ask.

Hugs
Chrissie

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#13466 - 02/08/07 09:12 PM Re: Eosinophilic oesophagitis anyone???
Francesca Offline
Member

Registered: 01/16/06
Posts: 94
Loc: Brisbane, Australia
Chrissie,

Thanks for all your support - all this began in earnest when we changed from Elecare to Neocate Advanced(lower sodium levels and flavours)- despite being told they were very similar, there are obviously some important differences, altho' both seem to be corn based?
We changed back to Elecare after 3 days but the damage had been done and the symptoms have persisited since - also it was the beginning of summer, new pollens etc.altho' one would expect more of a reaction in the lungs too?
Current treatment is for just Elecare and water ONLY and try and get the asthma treatment from the ped next week once all biopsies have been confirmed - the spray is supposed to be ingested to reduce the inflamation, but it is steroidal....
I never would have thought that this could happen when using a button for feeding, but there you go!
Like you say it needs to be treated early as the possible long term problems seem very troublesome.

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#13467 - 02/08/07 11:14 PM Re: Eosinophilic oesophagitis anyone???
JoshsMummy Offline
Member

Registered: 05/26/04
Posts: 63
Loc: QLD Australia
Francesca im sorry to hear that the endoscopy has raised more questions than given answers. I hope the situation becomes more clear & that Lucias symptoms ease up very soon.
Dear little Lucia is such a trooper,
it was great to spend time with you both on tuesday! I look forward to seeing you all again, & taking you up on the spa invite - it will probably do josh the world of good.
Any time you want to get out of the house & have a little company let me know - We're always happy for an excuse to go to the park - although we may not get a camera crew next time ;-)HEHE!!
take care & see you soon.

Love from Kandice & Joshua

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#13468 - 02/09/07 09:56 AM Re: Eosinophilic oesophagitis anyone???
Chrissie Offline
Member

Registered: 07/20/06
Posts: 122
Loc: The Gap, Brisbane, Qld Austral...
Francesca

I will phone you but may I suggest you look out for more discomfort with the steriods. When they treat the inflammation it can cause pain in the stomach, like bad indigestion. I am talking from personal experience. I have to take steriods(prednisone) and have to take meds to take the pain away due to the side effects.

I am pleased they took biopsy, sometimes they avoid that but so much better to have a clear diagnosis.
Hugs
Chrissie

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