A little funny for you...

Today the Wondertwins have decided that their room is off limits to everyone except themselves. The way they announced it was, "Hear Me, Hear Me..."

I just cannot bring myself to correct them LOL.

Unrelated note - I ran my very first 5K yesterday with a time of 37:32. I was thrilled with my time, I wanted to be under 40 minutes.

Also, Friday it seems that I fed Wondertwin A something that is should not have - she has been in pain ever since - poor baby.

I cannot believe I forgot!

I never posted what was determined at the March GI appointment.

Well the most wonderful, fabulous, amazing news is that Wondertwin A has been OUT OF PAIN since the beginning of March!

After the EGD, the GI doc doubled her Prevacid. This finally allowed the gastritis in her stomach to heal. Once healed, she is no longer in pain. Her wonderul, happy, silly, sometimes naughty, often loud true self has been revealed.

We took her off of Loratadine and she takes Periactin as her antihistimine and appetite stimulant. After 2 weeks on the new meds, and being out of pain, Wondertwin A, for the first time ever broke the 34 pound mark.

When we go back in April, I hope to reduce the prevacid and stop the appetite stimulant. I think she will eat now, because it no longer hurts.

Overdue update

Wondertwin A had another endoscopy and an MMI impedence study. Here are her results.

Endoscopy - stomach lining is still swollen and irritated, biopsies do not show EOS. Doc has never given me the numnbers of eos (if any) that he finds. He did say that EGID is still his number one theory about Wondertwin A. He also believes that we had the trigger foods removed before the first reliable EGD was done.

Impedence study showed that her throat clearing, coughing, and other weird throat sound are not related to reflux at all.

He doubled her Prevacid to 60mg daily. These seems like a huge dose for my little girl.

We go back March 11th. Unless she gain quite a bit of weight, we will schedule the ng tube placement at that time. She had lost weight again between the EGD and the day we were there for results.








A picture of all of her loot from the day! Beary3 from the GI staff, Minnie Mouse from Peds, blanket from Project Linus, Curious George from us, and 2 activity books from her sisters.

What now?

Wondertwin A has been having issues again for the last 2 weeks. She is not eating, has tummy pain, throat clearing, and cranky-pants-itis. A call to the GI, and we were seen yesterday. She has gained a pound since Dec (how is that possible? she does not eat!) so there will be no ng tube at this time. We are going to wait and see for 2 weeks to see if the other symptoms go away on their own. If so, great! If no, we will schedule another endoscopy.

Keep praying please!

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.

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.

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.

Another pic of patch testing results... I know that all of these pics have spots that are just a little red, so I am not sure if the results are positive or negative.

Oops - the picture that I was going to post is on the computer whose motherboard just died. You will just have to believe me that the milk patch and whatever was just above or below it (corn?) is also reddish.

Thank you to everyone who has been praying for my little sweetie.

Patch test results

Hard to see, but the spot to the left of the beef is red too.

The beef reaction (on the bottom) - red spot where pork was (on top). Is this a pork reaction?

The beef reaction - kind of looks like ringworm.

Update on little A

It has been a crazy week. A is still being very self limiting on what she eats. She will eat hamburger, apples, raisins, hummus with wheat free pretels; and a few other things. She will drink some of her formula daily, but not enough.

Our wonderful WIC nurse spent the day on the phone trying to get coverage for EO28 Splash thru the WIC office. She was finally successful!

The allergist has officially decided that we need to go back to the GI doc. We are out of her league.

Day 3

So day 3 of extremely limited eating. At least today she drank 3 servings of the formula so she received 1/2 of a day's nutrition that way. She at 1/4 cup of refried beans, a little bit of pineapple, 6 bites of apple, 1/2 of a hard boiled egg white, 1/4 cup cereal. She is still losing weight and looks sick again. Please continue to pray.

Food is highly over rated

This is little A's philosophy. She currently has decided that since food hurts her tummy, she will stop eating it. This means that she is eating less than 1/3 of her needed calories each day. She is getting about 450 calories from EO28 Splash. So, I am sure she is losing weight, and she is grumpy!

She will willingly eat rice + apples + beef + muffins + cookies. But not a lot of any of it.

Allergist and GI update

We saw the allergist and GI nurse on Thursday.

Curly Girl and Wondertwin C had their regular 6 mos allergy appointment. Nothing new was determined, no testing done.

Wondertwin A - a different story....

So, A had her scope, and it was visually clean, and the 1 biopsy taken (from her stomach) was also clear. Her GI said that she does not have EE or Celiac based on this one scope and one biopsy. You really do need more than 1 biopsy, more like 15-20 to rule out EE.

We went to our 4 week post scope appt, with the allergist first then the GI nurse. The allergist was confused about the scope. She referred us due to suspected EE and wanted more biopsies taken. A has lost weight in the last 4 weeks, therefore, we were advised to give her 3 servings per day of EO28 Splash or Neocate - these are Amino Acid formulas for children with severe GI issues or multiple food allergies. We have samples of each, and A likes the Splash.

At the GI appt, the doc was on vacation and therefore not available. The nurse was confused about why only 1 biopsy was taken. Based on A's history, she was expecting EE also. She gave us more Neocate and Splash samples.

We go back to the allergist in August for patch testing, with an appt with the GI nurse the same day.

A is currently self limiting amounts of food to about 1/3 of what she used to eat, so less than 1/2 of what she needs.

She is off:
allergies: chicken, turkey, fish, and seafood
sister's allergy: pear
reflux triggers (suspected): tomato, dairy, citrus, mint, chocolate

She also tests negative to all foods on RAST and SPT.

We will continue to call it "multiple food allergies with GERD" and treat her as if she has EE/Eos.

Lab results

I just received the pathology report the 1 biopsy showed reflux. Yep, they took exactly 1 biopsy from her stomach. Arg! I thought we were scoping to rule out EE and other EGID disorders, but you need 15-20 biopsies to make that call.

Scope results - take 1

A's scope appears to be clear. We are waiting on the biopsy results.

Scope time

Wondertwin A will be heading to the Children's Hospital for an EGD (aka upper GI scope). They will be looking to see what kind of shape her esophagus, stomach, and upper small intestine are in. If there is a certain kind of damage, they will be taking biopsies. The 2 main things they believe it could be is EE and Celiac.

Another update

Little A has been referred to a pediatric gasteroenterologist - or something like that.
I am not sure what he will want to do next.
My poor baby is probably in constant pain.

Update on Wondertwin a

For those of you following our saga, A has added another med to her diet. Zantac. This is for her reflux, in addition to the Prevacid, also for reflux.

We are also awaiting a referral to a Gi doc.