After 6 years of recurrent infections (chronic sinusitis, allergic rhinitis and asthma, lung infections, strep and a hospitalization for Pyelonephritis - kidney infection and now chronic dermatographic urticaria - hives) we FINALLY have a plan to stop the allergies, prevent the infections, calm the immune system, cease the hives and provide my child with a healthier happier life...my hopes are high!

This week we visited a new ENT (ear, nose and throat doctor) and a new Allergist. While I'm scared of the "action plan" I'm more scared of her continued illnesses so the plan is:

1. Allergen immunotherapy (allergy shots for 3 -5 years)

2. 2nd Myringotomy / tympanostomy (ear tubes inserted)

3. Ciliary biopsy (check to see that the mucus is being moved out adequately)

4. 2nd Adenoidectomy (removal of the adenoids if regrowth)

5. Tonsillectomy (removal of tonsils)

This plan was agreed upon after our pediatrician, infectious disease doctor, ENT doctor and allergist unanimously agreed.

TIPS:

1. Ask LOTS of questions - of doctors and of parents with children who have had these treatments and surgeries.

2. Research / read several articles on the treatments and surgeries. Don't rely solely on information from others.

3. Keep your binder updated and write notes after each visit so you don't forget anything you learned.

4. Make copies of labs, doctor's notes or medical history you have for the doctors you see. Don't assume they already have the information or have talked to your other doctors.

5. Stay as optimistic as possible. Talk to your children as honestly as is age appropriate...you want them to always trust what you say.

Pneumonia

I am currently trying to keep my daughter away from Pneumonia and the hospital. She went from a sore throat and sore ears to a sinus infection to suspected pneumonia. She is on an antibiotic and steroid as well as OTC (over the counter) medications to help fight the infection and tame the symptoms. The threat of pneumonia can be scary. Being educated can help you and your child feel more comfortable and fight through it.

Pneumonia is a general term that refers to an infection of the lungs. Often, pneumonia begins after an upper respiratory tract infection (an infection of the nose and throat), with symptoms of pneumonia beginning after 2 or 3 days of a cold or sore throat. A doctor can tell you have pneumonia by listening to your lungs or looking at a chest X-ray. http://kidshealth.org/parent/infections/lung/pneumonia.html

Speaking from experience a sinus infection or respiratory infection can head towards pneumonia pretty quickly. Some signs may include:

• Mild-moderate fever
• Sore Throat
• Headache
• Prolonged period of coughing
• Decreased activeness
• Loss of appetite
• Labored breathing
• Abdominal pain
• Any symptoms resembling the common influenza virus

TIPS:

1. Keep notes on what symptoms your child has, when they started and how they have progressed.

2. Ask questions...doctors can use a variety of terms like lung infection, upper respiratory infection, walking pneumonia, etc. Make sure you are clear and ask the difference and what to look for.

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.

Allergy Free Foods

If you are asked to "test" your child for a dairy, soy or gluten allergy or if your child tests positive for one of those allergies...you may not know where to start. These are some helpful sites that give food and meal ideas. Check with you local grocery store...they may have lists of food they sell that fit into these categories either on their website or at their customer service desk.

DAIRY & SOY FREE: http://www.milkfreekids.com/p/dairy-free-foods.html

GLUTEN FREE: http://www.kidceliac.com/index.php?option=com_content&view=article&id=48&Itemid=53

If you live in Texas and have access to an HEB grocery store...here is their Gluten-Free Shopping List http://www.heb.com/static/pdfs/Gluten-Free-List.pdf.

Whole Foods also has a Gluten-Free Shopping List http://wholefoodsmarket.com/specialdiets/SW_GWY_Gluten_Free.pdf

ALLERGY FREE FOODS: http://www.kidswithfoodallergies.org/resourcespre.php?id=87

ANTI-INFLAMMATORY FOODS: http://www.metabolismadvice.com/anti_inflammatory_food/

Understanding Immunoglobulins

Both of my children were sick frequently and under the care of our Pediatrician, Infectious Disease Specialist, Allergist / Immunologist, Pulmonologist, and ENT Specialist. Depending on your child's symptoms and medical history you may see any one or a combination of these.

An immunoglobulin test measures the level of certain immunoglobulins, or antibodies, in the blood. Antibodies are proteins made by the immune system to fight antigens, such as bacteria, viruses, and toxins. http://kidshealth.org/parent/system/medical/test_immunoglobulins.html

TIPS:

1. Be persistent and ask questions until you understand and feel comfortable with the diagnosis and care of your child.

2. Keep all lab results in your binder (See post "The Best Thing I Ever Did").

3. Look at the big picture not just one set of labs. Compare medical history and diagnosis with ALL labs.

Understanding Autoimmune Labs

An antinuclear antibody (ANA) test measures the amount and pattern of antibodies in your blood that work against your own body (autoimmune reaction). http://arthritis.webmd.com/antinuclear-antibodies-ana

The immune system makes an abundance of proteins called antibodies. Antibodies are made by white blood cells and they recognize and combat infectious organisms in the body. Sometimes these antibodies make a mistake, identifying normal, naturally-occurring proteins in our bodies as being "foreign" and dangerous. The antibodies that target “normal” proteins within the nucleus of a cell are called antinuclear antibodies (ANA). ANAs could signal the body to begin attacking itself which can lead to autoimmune diseases, including lupus, scleroderma, Sjögren's syndrome, polymyositis/ dermatomyositis, mixed connective tissue disease, drug-induced lupus, and autoimmune hepatitis. A positive ANA can also be seen in juvenile arthritis. http://www.rheumatology.org/practice/clinical/patients/diseases_and_conditions/ana.asp

TIPS:

1. The test is more accurate if fasting is done 10-12 hours before conducted.

2. Get a copy of the results.

3. Discuss them with both your Pediatrician and Specialist until you understand and are comfortable with the results.

Liver Function (Hepatic) Bloodwork

The hepatic function panel, also known as liver function tests, is a group of seven tests used to evaluate the liver for injury, infection, or inflammation. http://kidshealth.org/parent/general/sick/labtest6.html

Looking at Liver Function Bloodwork. http://www.dummies.com/how-to/content/looking-at-liver-function-bloodwork.html

TIPS:

1. Ask for a copy of the lab results.

2. Keep the results in your binder (See post "The Best Thing I Ever Did").

3. Ask questions and discuss results with both your Pediatrician and Specialist.