My 4 year old daughter has multiple chronic conditions she has been sick since birth and I am desparate to find anwsers. She has been diagnosed with eosiniphilc esophagitis, GERD, Asthma, excema, a carnitine defiecency and an undiagnosed underlying condition. She has had a million tests in her 4.5 years, either normal or a few things off her and there.... Doctors are stumped we are currently waiting for a rhumetology appointment in two weeks. I will list random abnormal test info from the last 4 years that I can think of off the top of my head as well. Its not just my daughter both my boys have very similiar medical conditions and issue my daughter is just worse. I think its something genetic.
One of our current biggest issues is YEAST... Tieler (DD) has a SEVERE reaccurent yeast infection in her esophagus...They can not get rid of it at all. she has had it for over a year she has had 4 endoscopys in one year and they show terrible yeast thats extremly painful to the point were she will not eat solid food she is on and elemental diet due to her EE. She has always had severe reaccurent yeast infections in other places all her life but this one takes the cake. they have tried giving her every kind of yeast med they can and she has been put on 8 prescriptions in a year without any change it is actually getting worse? She also currently has a condition called onochomodemis were her fingernails and toenails are breaking are falling out. Her other medical conditions/ info is below anyone have a kid like this? we don't know what to look at?
Tieler has had:
Eosiniphilc esophagitis
Lactose intolerant
Food allregies:
Anaphylactic: Egg, Peanut, Cashew, Pistachio, treenut, and Milk
Non anaphylactic- IgE: soy, wheat,Oranges, Chicken, Rhye, Oat.
MRI: (at age 3) Normal but delayed brain age (whatever the hell that means?)
Organic acid urin test: elevated glycine?
Carnitine def.
Low birth weight
Low muscle tone walked at 20 mo. sat up alone at 13 mo.
Speech delay
Normal EEG, normal sleep EEG.
Asthma
She gets re accurent infections of: Croup, respitory infections, bladder infections. She has had multiple viral infections your only suppose to get one time like hand foot and mouth (3 times) Rosiloa (5 times) she had a hospitilization for a severe case of
Cdiff and has had pnemonia twice and staph.
She has sever vision issues if her eyes were any worse she would be leagally blind. she wears glasses that help.
She does not sleep she complains of leg and feet pain at night and since birth has been a non sleeper. she has had 3 seizures, but they have no idea what causes them and up till she was 2.5 had a "shutter" that nuerologically could not be explained. it is gone now.
She is at a doctor or specialist once a week I swear! and she has had 5 hospitalizations in four years. We know there is more going on than the stuff we have a diagnoses for but were completely confused about were to go next I havent seen any other kids like her except my other two children. :) someone have ideas?? amyone?