Friday, May 13, 2011

Update on Keandre

 

This is the best description of Eosinophilic Esophagitus that I have seen!  If you want to understand our journey more, this is a good starting point -- much easier to understand than other links I've given. 

Please, please pray for Keandre.  We saw so much improvement when we first took out the additional 15 foods (+ the orig. 4).  A week later we realized he was also reacting to wheat and honey, so we removed those as well.  Incredible.  Apparently our son is allergic to 21 foods.  And to think that we hoped none of our children would be allergic to peanuts.  The whole food allergy issue seemed a little scary to us. :)

After seeing about 80% improvement in his worst symptoms (severe reflux & vomiting, stomach/esophagus/throat pain, runny nose & eyes, irritability and behavior issues, etc.), he seems to be getting worse again.  Although he has not thrown up in two weeks, his stomach hurts often, and sometimes his throat is very painful (reflux burn).  He is completely dependant on twice-a-day Zantac to neutralize the acid, and still it is not enough.  The steroid slurry that is prescribed for EE would not help him, as the EE (esophagus) is moderate, but the EG (stomach) is where the disease and pain is worst, and it would not address this at all.

We may need to go in for another round of patch testing, to see if there are other foods he's reacting to. 

This disease is difficult to treat.  It is rare, which means there are very few doctors who specialize in it, and there is no set protocol for how to approach treatment. 

For Keandre's sake, we need to see a lot more improvement when we do another endoscopy in a couple months, or we will need to try him on just elemental formula to help his body heal.  That would be so hard on him, not to mention the surgery and tube feedings we would need to administer.

Oh, how my heart hurts for my son tonight.

10 comments:

Jamie said...

My heart is heavy for you both right now, and you will be in my prayers. I wish I had a way to help.

Lachelle said...

I am praying for Keandre to be healed.

Rachel said...

Praying for Keandre's healing and for you as you deal with this.

Alice said...

Praying for wisdom and guidance for your family as you struggle with this.

Whitman said...

I'm so saddened to hear that his condition is worse. I will be praying for him! Please, please let me know if I can do anything at all for you guys.

carryannb said...

Definitely praying for Keandre and your family...especially that he won't need to go the route of surgery / feeding tubes!

Carolyn

Robin said...

Oh Kiara, I'm so sorry! You're all - and especially sweet Keandre- in our prayers.

Denise said...

I'm so sorry, Kiara. My heart aches for Keandre and I can't even imagine the frustration you must feel. Praying for answers and a cure!

Jenny said...

Praying with you. Hurting with you. Please get some rest. God gives discernment and insight to a Mama's rested body and soul.

Annie said...

Sending love and lots of prayers to our delightful little Keandre!

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