Intro of myself and my failure to thrive princess

[lilblossom143]

My name is Jane-I am a mother of three wonderful children.  My 14 month old name is Ella who weighs 16.4 lbs.  Ella was diagnosed at 8 months with failure to thrive or what I would consider to be failure to gain weight in our case.  Ella stopped growing at about 8 months in utero.  The doc decided that she would grow better out and I was induced at 37 weeks.  Labor and delivery were good and she seemed to be healthy.  At a month of age her bowel movements indicated blood in the stools and diarrhea which is classic MSPI.  The doctor had us limit my intake but not eliminate it as long as she was gaining weight and at that point she was.  At 6 months she broke out in a severe rash head to toe.  We took her too a dermatologist who said it was eczema and prescribed a cream.  The cream did not help.   We had our zinc levels tested and it showed that I was the only one that was deficient.  During this time we had her tested for allergies and nothing irregular shows on the blood work.  At eight months she started to develop large granulomas all over her body anywhere from her big toe to her eye lids.  At that point we were admitted to the hospital for what they thought was histiocytosis.  During our stay they ran all sorts of tests and nothing irregular showed.  The biopsis came back that it was not and we were so relived.  At that point we saw an immulogist who offered no suggestion except she was allergic to peanuts and dust mites.  I discontinued use of peanuts immediately.  I also made some serious diet changes to try to clean up the situation.  I went back to the basics in my diet as well as hers (NO WHEAT,GLUTEN,MILK,SOY,CORN).  It worked we cleared her skin to perfection.  At this point we can tell if we eat something that does not agree with her because her rash will return.  We had tubes put in her ears at 10 months and it helped some with the ear infections.  The ear infections have always been serious enough that she would have to get shots of antibiotics because the bug was resistant to every other antibiotic.  We have had 5 ear infections since our tube placement.  We now keep her at home and the only time she leaves the house is to go to doctor appointment.  Everything has improved except for her weight gain and her immunity.  We then went to see a gi doc who did and upper and lower gi scope and it as well showed nothing.  They however figured it would not because we are on such a clean diet.  We also saw a metaboloic doc who only found a low vitamin d level which is from improper nutrition.  We really have no choice in what we eat seeing how she reacts so terribly to food.  We have seen every specialist here in Omaha and they all scratch their heads in what to do with our situation.  Our latest is her sever reaction to bug bites.  She gets a bulleye rash (which is common with Lyme Disease) but not in our case.  When the bites start to heal 4 weeks later the bites have stayed with a granuloma under the skin.  The last couple months seemed to be going in the right direction as far as her weight and then SHE LOST A WHOLE POUND in 2 weeks!  At this point our general doc feels we need to move on to find her more help.  We are going to Mayo Clinic on the 13th of August for hopefully an answer if there is one.  Is there anyone who maybe is going through this and can offer any advice?  Thanks for reading!

[MSugarKane]

Jul. 26, 2009 at 9:16 AM

Is she diagnosed with siliac disease:?  My sister has that.  She is in her 50's now but she was born with it.  Diet was the key to enjoying her life.