Update on Harry {the ER}

Saturday, May 28, 2011
A quick update on Harry.  Some preliminary tests indicate that Harry could have even more food allergies than we expected.  So in addition to wheat, gluten and dairy, he appears to react to beef, chicken (and turkey), peanuts and possibly eggs.  This is NOT good.  Most of my weekday staples for all three meals include beef (stew and tacos) or chicken (tortilla soup, gf pastas, grilled rotisserie) or eggs (scrambled, omelets or egg tacos for breakfast).  Even our favorite gluten free bread contains egg.  We are pretty upset.  He might be limited to fruit, veggies, fish and a few grains like rice and quinoa. We will know more next week (after the endoscopy and colonoscopy) but this is disheartening.  It is hard enough to plan meals and get enough fat and protein into Harry as it is.  All the gluten free dairy free things we bake for Harry have eggs in them.

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These are small bowls of pure foods taped to Harry's back.  They had to stay there for 48 hours and he could not exercise, play sports, do recess or shower...YUCK!  It was actual little pieces of beef, chicken, potato, corn, rice, peanuts, egg, etc in there!  It kinda grossed me out.  This is a relatively new way to test for food allergies that have a more internal and delayed reaction (t-cell) rather than a quick histamine reaction (which is what the prick tests discover).

Also, yesterday Harry swallowed the pill cam.  He did GREAT at first and the nurses all told him that he swallowed it better than the teenagers do (first try).  It is a HUGE capsule...think of the biggest vitamin or capsule you have ever seen.  

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{these are all with my Iphone}

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After a few hours, Harry developed a severe headache.  He slept for a while and then when he woke he was allowed the first snack he could eat in 24 hours.  He had gf crackers and an apple.  Then about 2 hours later (and 6 hours into the test), he started vomiting.  This is not a good sign with the pill cam at all.  The camera needs to do down through the digestive system NOT up. It is a rare complication indicating that possibly the camera got stuck.  So, we had to drop Kate at my friends and rush to the ER.  After an ultrasound, xray, zofran, blood work and a lot of waiting, they finally let us come home.

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{This is after the zofran kicked in and he was feeling much better}

If the nausea returns we need to go back to the ER to see if the capsule is stuck.  However, I am hopeful it is not.  He seems quite chipper this morning and is already dressed for a soccer tournament!

Tuesday morning he has the endoscopy and colonoscopy and once again, we would love your prayers.  Harry is an incredible kid but he is not the best patient. He gets really ticked off that he has to go through this sometimes. He has a HUGE fear of needles and it is a major ordeal whenever he needs to get stuck. He did okay with the IV line last night because they sprayed numbing stuff on before (note to self...ALWAYS ask for the numbing spray).


Some of this is simply so I will remember this and have it recorded somewhere.  Unfortunately, one of the doctors told me yesterday that Harry will have to repeat these procedures throughout his life to periodically check on his digestive system and I want to have it recorded how he fared.  I had no intention of taking photos or I would have had my real camera  with me but Harry asked me to take these with my I-phone.

Hope y'all have a great Memorial weekend!  

45 comments:

  1. Poor buddy! You are in my prayers.

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  2. Saying my prayers, and sending you warm hugs as you navigate this new challenge. Prayers will continue next week for Harry and all of you.

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  3. I'm praying for you guys now. Hang in there Harry!

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  4. Oh Kim, praying for Harry. Bless his little heart.

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  5. Harry brings new meaning to the word TROOPER . I feel so sorry for him! I can't imagine having his already limited diet being more restricted:( my thoughts and prayers are with him and the Whole family.

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  6. oh my gosh Kim. this poor little guy.

    I hope the pill cam worked and you will get some results from it. He went through so much.

    and now the poor little guy has to have more on Tuesday. I will pray that the prep for those tests go ok and the results too.

    lea
    xo

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  7. Many thoughts and prayers are headed your way. I feel so bad for Harry. He always seems to be such a sport and I know this is taxing on him (and you!). Hugs!

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  8. I have followed your blog for a long time and rarely comment. I have a son who has many allergies as well and it can be very challenging. I will be thinking of you all and hoping for the best!!

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  9. Poor Harry! You all have my prayers!

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  10. Oh, Im glad that you captured this moment in itme for Harry - no matter how uncomfortable! What a BRAVE boy he is! I do not think I could have swallowed that camera!! And I think the taped bowls of food on my back for 48 hours would drive me nuts! I am so proud of Harry for undergoing these tests so that he can get to feeling better.

    Praying for you, Kim! And for sweet Harry - I know these results will affect your whole family!

    Hugs,
    Sara

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  11. Poor Harry. It's so hard for moms too, to watch our little ones go through medical things. Poor you too!

    Harry is a trooper and will come through with flying colours!! Of this I am sure :)

    Good for him for being as good a patient as he can be. That pill capsule looks enormous and my 10 yr old would never, I repeat, NEVER be able to swallow that thing!!!

    Bravo, Harry! Good luck on Tuesday!

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  12. Oh my word! That is an awful lot for a little guy to have to go through. That allergy test is the most bizarre thing. My son has something similar, but they just prick his back with something.
    Harry is a trooper to be sure. We'll keep him in our prayers.

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  13. I am so sorry for his and your ordeal. Prayers!

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  14. I am so sorry for you both!!! Praying now for ya’ll!

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  15. Oh, Kim, I'm sorry that Harry and you are having to go through this! I hope that the whole ordeal yields actionable results that are less restrictive than you expect. Please keep us posted!

    Love to all.

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  16. Kim please let Harry know I think he is braver than most adults I know. Just seeing that last pic made me smile and tear up a bit. Praying for him and all of you.
    xoxo
    Nancy

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  17. Praying for Harry! Poor Kid!!! :( He has such a good attitude and is so lucky you are his mom.
    I am on gluten free, vegan, no sugar, no alcohol now and lots and lots of herbs! I might have told you this. Thinking of your crew....

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  18. Saying a prayer..
    I wish this was not happening..but his face is priceless..he is soooo amazing..
    Love you girly..
    Sorry I haven't been commenting.. I am reading ... Love ya and miss ya

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  19. How awful for Harry and for you. I imagine since you are in (big Texas city) you have access to world class specialists. Good luck!

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  20. Really praying for the best for him. I'm just about to graduate as a dietitian and did my final year research project on the management of complex food allergies in the UK.

    I'm guessing you've probably seen a dietitian in the past but if it turns out Harry has more allergies it might be worth asking to see one again to help you manage the restrictions.

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  21. Your Harry is just adorable ....and I will be praying. I know how hard it is to have a child dealing with tests, hospital stuff, etc.
    Debbie in KY

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  22. Oh my -- bless his heart and yours too! What an ordeal for your sweet Harry.

    Keeping you all in my prayers!

    Janet

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  23. Poor Harry. Sadly I know what it is like to go through tests like that.
    He and your family will be in my prayers.

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  24. My heart goes out to you , we deal with peanut , tree nuts and snap pea allergy , thankfully these are quite easy to avoid with our labeling laws here in Canada , you have got a challenge on your hands in deed . Don't you wonder why and how a child could be allergic to so much .
    Its so hard on kids , when the ice cream truck comes to our area all the kids run and are happy , Sophie just gets mad a frustrated ... but it is all she has known , but still it is hard to feel like the odd one out .I hope people appreciate how easy they have it with non food allergic kids , it must be so care free, I can only imagine .

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  25. Poor guy! I am not cf but I know friends who are and make an egg sub with flax seed for cooking/baking. I've read several blogs who are both gf and cf and they bake their own breads in a standard buy at Target machine with great success. As far as proteins- that really stinks. But I cook with a lot of beans. Though usually with chicken or turkey but you'd be surprised how yummy plain ole canned chickpeas are in a rice/veggie/whatever normally has chicken dish. One of my favorite meals is simply fresh fish tacos in corn tortillas. I'm sure you can get the real deal down your way too. MMMm!

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  26. Goodness gracious, praying for poor Harry.

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  27. Hugs for Harry - he is a very brave boy and a sweetheart! Hugs for you too, Mama!

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  28. Oh Kim, I am so sorry to hear about the initial findings and the difficulty with the pill cam. I literally started crying when I saw Harry's little smile while laying in the ER. My heart is breaking for him. Stay strong. YOU (all) WILL get through this.

    I will continue to keep your family and his drs in my thoughts and prayers.

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  29. Praying for sweet little Harry and his momma.

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  30. What a brave little guy. He is so stinking cute too. Praying for him and his mama :) Be blessed.

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  31. I just started following your blog. I have 3 kids, 2 with food allergies. My oldest can't have milk, eggs, peanuts, tree nuts, fish, shellfish, sesame and also has drug allergies. My youngest can't have milk, soy, eggs, peanuts, tree nuts, fish, and shellfish. There was also a time that she wasn't able to have wheat.
    While my children haven't had the testing that your brave Harry is enduring right now, I can truly sympathize with your situation. If you need any help with fixing recipes so that they are more allergy friendly, please let me know.

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  33. Poor Harry- he is quite the trooper! I hope you get the answers you are looking for. Kepping him In our prayers for the next round of tests.

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  34. What a brave little man. You guys are in my thoughts.

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  35. Poor Harry!!!! Hope all is well really soon, big kiss for him!!!!!!

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  36. Oh no! I was hoping for good news considering the party with all the fun foods... Will pray for harry!

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  37. I am a blog reader, and just wanted you to know that I am praying for Harry and your family. Bless his heart :(

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  38. Prayers for you son. Food allergies are just no fun at all!! I pray for a cure one day.

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  39. I'll be praying for you sweet little guy! Hang in there.

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  40. Praying for you sweet Harry, I know this has to be so hard to watch him go through all this testing. I hope the test return more positive.

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  41. I'm behind on reading since the weekend...poor Harry!! I'm praying that everything goes smoothly this week and that some asnwers are found. I can't imagine dealing with all of this, I'm so sorry for you all!

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  42. Oh Kim, my heart goes out to you. Our Emme is anaphylactic to peanuts & tree nuts, since the age of 2. I know how difficult it is. He is in our prayers. (((HUGS)))

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  43. Harry is such a trooper. I hope this gets easier for him...

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  44. Hi Kim, I wanted to recommend a protein powder you may be able to supplement into Harry's diet, it's called Sunwarrior (http://www.sunwarrior.com). Sunwarrior is a raw whole grain sprouted vegan protein. If you have the time, I highly recommend these sites for recipe ideas, loveveggiesandyoga.com & ohsheglows.com God bless Harry...what a trooper. :)

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Thank you for your kindness.