We witness a miracle each time a child enters a life. But those who must make their journey home across time and miles, growing in the hearts of those waiting to love them, are carried on the wings of destiny. And placed among us by God's own hands.

Sunday, January 31, 2010

Please Pray for Leo

Update: Thank you everyone for the info! They did test him for Celiac disease at the Children's Hospital and it was negative. I may try decreasing his gluten intake anyway as he probably is just not used to it. I think they ate primary rice, beans, eggs, bananas, maybe potatoes at the orphanage. I love the goat's milk idea and had never thought of it. He refuses to drink either soy milk or lactose free milk formula. One sip and the sippy cup is thrown to the side!

Our son's gastrointestinal issues are not at all improving. I have put him on probiotics and have him on the Brat Diet (mostly) plus eliminated all dairy products. We have completed three treatments for parasites thus I really hoped that things would get better. However, the last three days he is worse, way worse. He has woken up everyone morning with "blow-outs" and big messes for mom to clean up. They then continue on and off all day. This has been going on for the entire 7 weeks that he has been in our care and probably much longer. I am worried that he is going to end up dehydrated because he is getting more and more picky about what he will drink. At the same time we are worried about his nutrition since he has a growth hormone deficiency. I am fearful that until we get his gastro problems resolved he will never be able to maintain enough nutrition to start producing growth hormone again. I looked at the Pediasure and all the other nutrition drinks and they all have dairy in them so those are not a option. We are following up with his local doc this week, then will see a gastro specialist but I have this sense that they are not going to have any easy or quick answers.

To top off the frustration his doctor signed a letter for my employer saying that he cannot be in childcare yet for various reasons. I turned it into our HR who then took it to the committee who makes decisions about granting pay out of the temporary leave bank. And guess what they denied my application to the leave bank?! They did not feel that his medical issue was significant enough for me to receive pay out of the medical temporary leave bank which I am a member of. What do they think that I am making this up? Not only is he possibly still contagious, but he is malnourished and at risk for anemia and dehydration thus he is on a extremely limited diet. I would really like one of them to come to my house to deal with this and wash the cloth diapers. Yes, cloth diapers despite gastro problems, I know I am crazy but I can't stand the thought of all those disposables sitting in a landfill and we have successfully avoided any diaper rash issues.

Ok. so if anyone has any suggestions as to a diet other then the Brat diet I would be open to anything at this point.

8 comments:

  1. I'm NO expert at this stuff but what about gluten? I know it's likely more complicated, but have you investigated celiac disease?

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  2. No advice. I hope he gets better soon....and I think your job stinks : (
    That makes me mad when companies do that...

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  3. Kari, Our son Nate has something called Cyclic Vomiting Syndrome and has issues with weight gain. For a while we had him off all dairy and I was using a non-dairy protein powder mixed with soy milk. It helped with weight gain. I got it at whole foods. We are praying for your boy! Laura

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  4. I'm certainly no expert, either, but I recently started a gluten-free diet for my joint pain issues, and in a book I was reading (The Gluten Connection), something was mentioned about gluten sensitivity complicating parasite issues. I believe giardia was mentioned specifically. We're now considering starting our adopted child off on a gluten-free diet and working our way into moderate gluten consumption. I don't know if there's anything to it, but it's worth looking into! Hope you're able to find a solution soon!

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  5. Our son Moses from Rwanda was still having some bad stools (although they don't sound as bad as what your dealing with) but we decided to not only take him off of lactose, but we put him on goat's milk. Saw a difference in his stools that same day. We're still not 100%, but it's definitely been an improvement. I chose the goat's milk over soy, rice or almond milk because it seemed to have more of the fat content that I wanted him to have. He loves it!
    Praying for you and grace for you! You really should bring in a blowout diaper to a meeting at your work. :) Maybe you should make that a day old blowout diaper...

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  6. Hi again, Kari. I just had a follow-up thought regarding gluten. I read in the same book (The Gluten Connection) that most tests for gluten sensitivity are inaccurate because they only test for Celiac, which is only the most extreme condition. There are supposedly only 2 labs in the US that run tests (I think using stool samples) that can really identify the level of sensitivity apart from Celiac. Again, I don't know how accurate that is, but if you want to look into it, I'm sure you could find the book in Barnes & Noble. Unfortunately I loaned it to my parents, so I can't look up the info. Best wishes with Leo! I hope he's feeling better VERY soon!

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  7. try this: http://www.a4everfamily.org/index.php?option=com_content&task=view&id=138&Itemid=113

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  8. Hi Kari,
    I'm not even sure how I ran across your blog. (It was through other adoptive mom blogs, although I couldn't tell you which ones! :) But our youngest son is almost 3. We adopted him at birth, and he had a lot of GI issues his first 2 1/2 years. It was tough! I'm not sure what all has finally mostly resolved it, but allergy testing, and cutting out several foods he was allergic to, did help. We also do probiotics, and give him digestive enzymes when we're eating foods I suspect he has a harder time digesting. Our son also struggles with acid reflux, and I know some children have reflux issues but don't spit/throw up the acid, and then it can come out in their diapers instead. There is so much to consider. Hopefully a GI specialist will be willing to really brainstorm and do more tests, possibly even a scope to see how inflamed/injured his insides may be. I will pray you find more answers soon!
    (from another cloth diapering adoptive mama :)

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