Cailyn Medical Update

So on Wednesday Cailyn had her 3rd endoscopy to see if her infection/allergic reaction to food has cleared up and her esophagus is free of white blood cells. Good News--it's all clear and looks like a healthy esophagus. Also good news we were able to stop the steroids today, which were supposed to help the food allergies but we believe have been the culprit behind her severe increase in seizures. We have a followup appointment at clinic on the 12th and we'll get the biopsy results and discuss next steps.

We also took Cailyn to the best playground around this week and she got to ride "her swing".

She's gotten so big. This picture is from one of her first times on "her swing" in 2009. Not sure why she likes to cross that leg and bring it up on the swing.

This is a great new swing they have. You put her wheelchair right on it and it locks in place. I think she might like this swing the best because she's sitting so comfortably and not so slumped like in the other swings. It's pretty cool. We got our own key for the swing so we can use it whenever we head over to the park.

Because Cailyn is Cailyn--a unique little girl

In the recovery room after her most recent endoscopy--my beautiful lady.

Because Cailyn is Cailyn, and no diagnosis or cure can be easy for her.

Last Friday she had her 2nd endoscopy to check her esophagus and see if the white blood cells from the eosinophilic esophagitis had dissipated with her very strict elimination diet, which had us eliminate 23 different food items out of her diet due to allergy or sensitivity.


here's the background

In July Cailyn had an endoscopy and impedance test which I requested since she's always had reflux. I wanted to see if her esophagus was getting damaged and if she was on enough meds for the reflux. So ends up her reflux was ok but she was diagnosed with eosinophilic esophagitis. This was very upsetting and we engaged in very involved patch testing for food allergies and found 23 items she reacted to.

So the plan was to eliminate those 23 things from her diet for 3 months and then do another endoscopy to see if the white blood cells/eosinophils had cleared up. Yesterday we met with the EOE team (GI, Allergist, Dietitian) to find out the results. Ends up the elimination diet did nothing for Cailyn and there was no change. This was frustrating since we had cut so much out of her diet.

So we were given a few options and the one I think we'd like to try is to do is a steroid (Budesonide and the dose would be 1/2 tsp compounded at 1mg/5ml twice a day and taken orally) taken for 3 months with a follow up endoscopy at that time. Usually this steroid is inhaled for asthma but it has been shown to fix EOE as well. Once she's on the steroid we can go back to eating anything she was eating before except milk and egg since we have seen very severe reactions to both of those.

She truly is my 1% baby. 1% chance she'll have a specific reaction to a med, 1% chance of a diagnosis etc. Not sure if it's a 1% chance the elimination diet would not work, but I wouldn't be surprised.

Food Allergies--Elimination Diet Begins

Ok so for the next 3 months we will do an elimination diet for Cailyn and try to let her esophagus heal by removing all foods she may be allergic or sensitive too. The list is extensive.

The Red List is No-No and will be eliminated for at least 3 months

1. Milk

2. Egg

3. Soy

4. Wheat

5. Tomato

6. Peaches

7. Zucchini

8. Green Pepper

9. Honey Dew

10. Cantaloupe

11. Chickpeas

12. Yellow Squash

13. Onion

14. Spinach

15. Beef

16. Pork

17. Pineapple

18. Raspberry

19. Butternut Squash

20. Sweet Potato

21. Turkey

22. White Potato

23. Red Beans (these last two are being reviewed again and may be able to go on the green list)

24. Black Beans

The Green List is OK

1. Chicken

2. Green Beans

3. Carrots

4. Corn

5. Peas

6. Pears

7. Coconut

8. Apple

9. Prunes

10. Oats

11. Rice

12. Barley

13. Orange

14. Avocado

15. Almond Milk

16. Jello

17. Banana

18. Quinoa

19. Lentil

20. Grapefruit

21. Apricot

22. Blackberry

23. Tuna

24. Peanut

25. Red Pepper

26. Pumpkin

27. Grapes

28. Strawberry

29. Lemon

30. Papaya

31. Blueberry

32. Broccoli

33. Yellow squash

34. Garlic

35. Salmon

36. Watermelon

37. Lime

38. Plum

39. Flaxseed

40. Mango

Food Allergies Suck

Much to our dismay, 9 more foods have been identified as possible allergens for Miss Cailyn... and some of these are ones she's particularly fond of.

• Soy
• Wheat
• Beef
• Pork
• Pineapple
• Watermelon
• Raspberry
• Butternut Squash
• Sweet Potato

We will meet with the GI and Allergist in September and review all this but I want to do more testing of other foods so we can cobble together a well-rounded diet for the girl in trying to clear up her EOE.

Another diagnosis for Cailyn

It's great to get answers but this one was hard to hear. Cailyn's endoscopy last month revealed she has a disease called EOE-esophillic esophagitis.

In eosinophilic esophagitis, a type of white blood cell (eosinophil) builds up in the tube
that connects your mouth to your stomach (esophagus) as a reaction to foods, allergens or
acid reflux. When that happens, the eosinophils can inflame or injure the esophageal tissue.

So treatment now is extended allergy testing and then a strict elimination diet making sure she has no exposure to any foods she's allergic or sensitive too.

Usually kids don't want to eat when they have this disease but that hasn't been NE of Cailyn's issues. It could also be why she doesn't want to drink though.

Lots of more Dr appts with allergist and GI doc and endoscopies every 2-3 months.