Please help with next steps - breastfeeding at major risk - Page 32

[DeChRi]

After everyone spent so much time helping, for 31 pages, I felt I should come back and let you know we finally have answers.  The short story, is we are dealing with an eosinophilic disorder.  And in the last couple weeks my 3 year old has been diagnosed with the same condition.  Many kids can nurse even with an eosinophilic disorder (like my 3 year old). Some can nurse after mom eliminates some foods.  And in my daughter's case, there is not yet a single food she can tolerate.  She is now almost 11 months.  She lives on Neocate.  She reacts with severe delayed stomach pain and vomiting to everything, including most inactive ingredients in meds, infant vitamins, added DHA to the Neocate, and Elecare (another prescription elemental formula).  Luckily my 3 year old did well on BM and likely didn't go downhill until a year ago when she weaned.  Our hope is that she is not as severe and she will be able to keep some foods in her diet.  We head to Denver in a couple months for a week of meetings with a specialist group there (GI, allergist, immunologist, dietician, psych, etc) and will have a better idea from there.

More info is at www.apfed.org.

Thanks for all of the help and support on this thread over the months!

[Mosaic]

I'm so sorry that you're dealing with this, but I'm glad you have some answers and a new, fresh starting point. We're suspecting an EID in my 1yo as well. This forum has other parents dealing with the challenges related to feeding problems, etc. that may be able to provide additional support:

http://parent-2-parent.com/forums/forum.php

[jenfl]

Thank you for coming back with an update!  Although I'm sorry your family is going through this, I'm so glad to hear that you have a diagnosis.  Some day when you have time, I'd love to hear how you finally got the medical community to take your LO's problems seriously.

[DeChRi]

Mosaic, thank you for the link.  I hope you find answers for your little one.  It is Such a challenge.
 

Originally Posted by jenfl 

Thank you for coming back with an update!  Although I'm sorry your family is going through this, I'm so glad to hear that you have a diagnosis.  Some day when you have time, I'd love to hear how you finally got the medical community to take your LO's problems seriously.

Jen, we changed Ped GI drs about 8 weeks ago.  THe new GI Dr suspected an eosinophilic disorder with the baby.  But we could not get food down her long enough to flare the condition without making her really sick, so we could not get an accurate scope.  Eventually she also threw up her hands and said...who knows.  It was kind of a fluke that my 3 year old suddenly started showing symptoms.  Normally this condition takes 3-4 years from first symptom to diagnosis.  But I called our GI, saw her on a THurs, they scoped my 3 yr old on the following Wed, and then called Monday and confirmed the disorder.  This brought us to the conclusion that likely the baby has the same.  The specialist we are talking with agreed.  We will need to get a firm diagnosis with her at some point, but it is tough because we have to feed her long enough to cause a reaction and she goes down hill so fast and takes so long to bounce back. 

I really only got the answers when I took control of the situation myself and tried to figure it out. 

[elanorh]

Soo glad you have an answer - hope the meetings with the specialists go well!  Thanks for the update. 

I don't know how much time you've spent in Denver, but some of our favorite places to go are:

The Butterfly Pavilion (very fun, and they release the butterflies at 2pm daily I think which is especially cool):  http://www.butterflies.org/

The zoo is nice - there are several indoor buildings if the weather is cold

Denver Museum of Nature & Science

If you're there on a weekday, any one of these is unlikely to be crowded.