EE Mother

My daughter is 16 mons.  there has been discussion of putting in a feeding tube for the past few mons.  she was diagnosed @ 7 mons.  it has been a long battle.  she has many food allergies.  she allergic to eggs, milk, soy, nuts, seafood, wheat, dustmites, and dogs.  her medical conditions are asthma, allergic rhinitis, eosiniphillic esophagitis, eczema, atopic dermatitis and acute sinusitis.  due to all of this we are on pulmicort which she swallows. which allows us to be on a med for thrash 4 times a day every day to prevent advair inhailor, zantac, prevacid, singulair, xyzal, elecon cream, albuterol and we carry an epipen everywhere we go.  due to the allergies, we've been unable to have all of our required immunizations.  we recently started a new vitamin nanovm and powdered calories duocal in hopes to avoid the feeding tube.  praying for a cure everyday otherwise her quality of life longterm will be sucky.  not 2 mention she suffers from failure to thrive and is still drinking elecare.  but b/c it contains soy, we've only been able to get up to 2 oz of elecare mixed w/ 6 oz of rice milk.  the soy in the elecare continues to agitate the eosiniphilic esophagitis.  i feel discouraged.  there is literally no where to turn for help with management.  we are under all types of specialist.  a Gi, pulmonologist, 2 allergist, an immune specialist, a dietician, an ENT, not to mention a regular pediatrician.  we have to drive 4 hrs. away just 2 c our GI. 

EEmother EEmother
26-30
1 Response Feb 19, 2009

i wish you all the luck in the world and i will say a prayer for yor little girl i developed it later in life but it seems i have past it on to my children recently cut all carbs and starches out feel a lot better wheat gulten is found in almost everything becareful