Flickr

floreksa. Get yours at bighugelabs.com/flickr
Google

Tuesday, October 07, 2008

My Life Right Now

I'm calmer now. I can write this without freaking out. Without crying my way through it.

We've been dealing with Ally's GI issues again. The beginning of September, I hauled her back to the Ped's. She had stopped eating and I could hear her refluxing again.

The Ped put her back on Prilosec and sent us back to the GI.

We saw the GI and he decided that "things weren't quite right" and ran more extensive, invasive tests. She has an abdominal ultrasound, more lab work and an endoscopy.

The endoscopy was horrible (for a parent). Holding her while she fought and struggled and screamed while they gassed her broke my heart. I just kept telling myself that this is a "simple" procedure - over in less than a 1/2 hour. I can not imagine what parents go through who do this while their child has surgery and is gone for hours. My heart breaks for them.

After the endoscopy the GI came back and told us he was "surprised" at what he found. Her esophagus was covered in white exudates (patches). He was convinced she had eosinophilic esophagitis (EE). I had an entire post ready to go, describing EE and Ally's treatment options, once we had the pathology report. Her symptoms match those of EE kids to a T - explaining every issue we've had from the minute she was born.

EE is a fairly new condition. It is thought that it is caused by food allergies (usually multiple) which causes the immune system to attack the esophagus. We had a week to research the condition and get used to the idea of restricted diets and allergy testing.

We met with the GI yesterday morning and he started with "I'm sorry" and that the "pathology report surprised him more than her endoscopy did" and while we were all set to "going left" and treat EE, the pathology report "went right" in a bizarre and heart-stopping twist.

Ally's esophagus is currently covered in a Candida infection (yeast infection). This is RARE in healthy children, very rare. The GI started in saying how they only see this in AIDS, chemo kids or kids on inhaled steroids. He stopped 2x to confirm that Ally was not on any sort of steroid (she's not). He has dropped looking into any sort of GI issue and is now focused on this 1 infection and her Immune System. Insistent that something is wrong with it. Her body should have fought this off.

HE SCARED THE LIVING HELL OUT OF US.


He is still positive that she has an underlying GI issue, either EE or severe reflux. That condition caused the inflammation which opened the door to the Candida. The pathology report could not confirm/deny any other GI issues, though, as the Candida was so prevalent it was all they could see.

I was a mess yesterday. Cried a lot. Googling esophageal Candida is not pretty, but once I calmed down and really started reading, I found references to proton pump inhibitors being a "contributing factor" (Ally is on Prilosec) and that "Candidal esophagitis can also affect healthy children" (though rarely).

Ally is healthy. I know she is. She's not sicker than the "normal" child. If anything, I think she's actually healthier. She's been in a daycare setting since she was 9 weeks old. She's never been hospitalized. We've never had to run her to the ER because of a cold or bug. She's fought everything off herself (with exception to ear infections) without medical intervention. We just need to get over this "bump". We need to clear the infection (she's on a med for the next 13 days). We follow up with the GI on Oct. 30th. We'll have to do another endoscopy.

We'll get through this.

7 comments:

Lisa said...

Poor sweet girl!! BIG prayers for you and your family. I hope that the results are positive.

Colleen said...

I'm sorry you're going through so very much - all of you.
Sending good thoughts and prayers for a quick resolution.

Amanda said...

I'm so sorry I didn't email you before you posted!

Ally is strong. You know that. She IS healthy and is a fighter. You have good doctors and you are both loving parents. You will ALL get through this.

You know I/we are here for you all. I'm sending a great big hug your way!

Scott K. Johnson said...

Thinking of you and your family.

RT said...

I hope all good things for your little girl! Keep us posted. And keep breathing--I can't imagine how stressed you must be.

Hannah*Lily*Ben said...

How difficult this must be for you...and her. She is a beautiful child!

~Liz
www.AGiveawayADay.blogspot.com

Anonymous said...

I hope Ally gets better.

Hopefully its just an infection, there can be different strains of Candida.

If its EE perhaps you need to move to a climate with less alergens, a different house a different state.. or use medication there are at least some treatment options if that is the problem.

It does not sound as though these are life threatening or life destroying illnesses. Its a bad situation but its not cancer or autism, its something that is controllable, understandable and predictable. You will be fine and will get through this.

Your biggest problem will most likely be making sure you have health insurance and maintain it.