Pediatric Mama - My Child

My 6 year old child is not "healthy" but she is not "terminal". I am VERY thankful for the latter. At the same time, I am also frustrated that we can't find a cause or treatment to help her feel better more frequently. She has issues that appear to be unrelated yet are problematic.

She has frequent: congestion and cough, ear infections, upper respiratory infections, constipation and bloating, chronic hives, dark circles under eyes and trouble sleeping.

She takes these medications daily: Flonase, Flovent and Alegra

She has had 25 prescriptions in the past year (almost half of those were antibiotics - others were for allergies and restrictive airway disease).

She has seen these doctors in the past year: Pediatrician, Infectious Disease, Allergy / Immunology, Pulmonology and ENT (Ear, Nose & Throat).

She has had the following procedures: Frenulum clipped, Ear tubes inserted, Adenoids removed and Eye probe & irrigation.

She has visited the ER for Pneumonia and been hospitalized 5 days for a Kidney infection.

She has had the following tests done: Upper GI (gastrointestinal), Sweat Chloride (for Cystic Fibrosis), VCUG (voiding cystourethorgram), Allergy test (skin), Allergy test (blood), Autoimmune Panel, Hepatic (Liver) Panel and Immunology Panel.

She has been diagnosed with: Colic, GERD (Gastroesophageal Reflux Disease), Mild Immune Deficiency, Chronic Sinusitis, Chronic Hives, Dermagraphism, Allergic Rhinitis and RAD (Restrictive Airway Disease).

We are now testing for a Gluten (protein found in wheat, barley, rye and some oats) allergy through a change in diet. If that doesn't prove anything we are being asked to test for a Dairy allergy through a change in diet.

All of this to say we are really no further ahead of my child's health. She doesn't feel well a lot but not frequently enough to be hospitalized and therefore it's not "significant" enough to justify any other treatment outside of daily preventatives and antibiotics when needed. She is so used to feeling not well that it takes a lot before she complains of anything. By that point she has a double ear infection and upper respiratory infection or an inexplicable infection it take as many as 5 antibiotics to overcome never having a true diagnosis with the exception of Strep which last time took 5 rounds of antibiotics to rid.

SO...I write all of this to tell others reading that may be experiencing a similar situation:

1. You are not alone.

2. Keep a binder that includes all of your doctors visits, reason for visit and outcome as well as all lab results.

3. Be persistent. YOU know your child best...what's "normal" and what's not.

4. Just because there isn't an established label for your child's condition...keep talking to doctors and doing your own research.

5. History matters! Look at the "big picture"...what are the things that keep popping up or the seemingly unrelated things that when put together may mean something.

You are your child's best advocate and both you and your child deserve answers and good health.