Allergist update

Our allergist is leaving OSF. Sad, sad, sad day. Luckily, she may be going into practice closer to us.

Today - Wondertwin A was put on inhaled steroids to get her "Reactive Airway Disease" aka asthma under control. We also have put in for this nebulizer. It is super tiny, smaller than my digital camera and silent. Since A will be using it daily, silent would be a big help. Please pray that insurance agrees with us.

Wondertwin C will be doing a pear food challange once our allergist gets settled. We are not confident that she will pass, but we want to be 100% sure that the reactions to unknowns are actually hidden pear.

Curly Girl - starting Nasocort tomorrow. She is pretty gunky, so hopefully this will help.

The girls at Rock City in Chattanooga TN.

Way over due update

I must apologize to my real family and my blog family. I know that many of you rely on this blog to keep you updated on the status of little A, but I have been unable to post. So here is the short and dirty version...

• biopsies from 2nd EGD came back clear - with means that A does not have EE or that if she does have EE, then we have eliminated the food(s) causing it
• We agreed to a 4 week food trial for corn. A failed it in 7 days, we kept her on for 10 to be sure. Symptoms: painful tummy, clingy, crying, insomnia, moody, reflux, coughing
• Removed corn from her diet: long term.... we did not remove corn derivatives such as malodextrin, but we did remove corn syrup and corn starch this time.
• Accidentally gave her powdered sugar (has corn starch) - painful tummy and clingy
• Mid Sept to mid Oct - food trial for wheat. She passed and is eating it in all forms multiple times daily
• Weight history June 30, July 31 lbs, Aug 30 (due to corn fail), Sept 31 , Oct 32
• Since the weight is going in the correct direction (UP), we will not trial foods at this time.

She has also had a respiratory infection (flu?) which led to a pretty stressful week of ongoing asthma issues. Currently, she is having GI issues (diarrhea) and a cough. I really hope the fever stays away.

In other news - Curly Girl had pneumonia last week. She is better, but her asthma also flaired.

Endoscopy #2

A had her second endoscopy yesterday.

The one in April looked totally clear, only 1 biopsy taken - from the stomach, no one even looked for eos like they were supposed to GGRRR. Fired that GI when he lied to me and wanted to "wait and see" if my 4 year old would miraculously heal herself.

The one yesterday - New GI. Scope shows esophagus has bumps on it and inflammation, stomach has an irritated area. 8 biopsies from the esophagus and 2 from the stomach were taken. Duodemum was visually clear and no biopsies.

GI said that it could all be related to GERD or she could have EE. We wait for biopsies. Follow up appt is next Tuesday.

I am frustrated that she looks worse, she is on 2 reflux meds (recently increased for weight gain) and off of 20 foods.

School

Well school is starting soon, the end of Aug. to be precise.

Diva is a second grader, but first she will finish up her 1st grade Math book. She has requested that the entire year be devoted to Abe Lincoln. I am pretty sure that her sisters will not go for that LOL. She would also like to learn to write cursive. Hopefully the left to right progress of all letters will assist her in keeping from reversals.

Curly Girl is a first grader. She wants to learn about dinosaurs and bugs and stuff.

The Wondertwins will be preschoolers again, who are along for the ride.

We are also participating in Classical Conversations this year. This program will be a wonderful way for us to stay on top of things this year.

New GI

Little A saw her new GI today. I really liked him. He is also thinking that she could have an EGID, but is not limiting his vision to just that. A has another EGD/endoscopy scheduled for this coming Tuesday, please pray for her. Doc will take multiple biopsies from multiple places.

Forgot to update...

Not long after the last post, we made more changes to A's life.

1 - her patch test should up as positive to pork and beef. We eliminated these 2 meats from her diet, and therefore she is essentially vegetarian. She does eat venison when we can get it.

2 - we fired her GI doc. Well not officially yet. He wants to wait and see for 3 months, to see if she will feel better. This is too long in my oppinion for anyone to be in pain. He also wants to wean her off of her reflux meds in 3 months. He said this right after I said that she refluxes if we miss one does. Lastly, he lied about how many biopsies were taken. He told me that he took one from the esophagus and one from the stomach. The esophagus one was lost. His nurse told me that there is no record of the esophagus one on the surgical report.

3 - A feels so much better on the current diet. I am worried about nutrition and calories. She does not eat enough food most days and has been refusing her Splash.

4 - tomorrow we head to the new GI for A's first appt.