A quick post. We have been doing the Specific Carbohydrate Diet protocol for Josh for 4 weeks now. Basically, we are severely limiting his foods to starve out bacteria and yeast in his digestive system. We have been adding one food at a time to a very small set of introductory foods. It is not going well. We are seeing improvements and the yeast seems to have died off. However, Josh is developing allergies to almost everything he is ingesting. We received our last food allergy test results this week and he is highly allergic to every nut in existence, wheat, corn, soy, eggs, sesame seed, and on and on. Anyway, I had an appointment with his nutritionist yesterday afternoon. Josh is currently eating broth, meat (chicken, turkey, pork, beef in rotation), boiled pears, green beans (he won't touch) and avocados. We have taken out the duck and quail eggs because we think he's allergic to them, and we're not certain if bananas, apples and/or carrots are a problem so they are all out until we are 5 days free of duck and quail eggs. Zucchini made him sick, so that's out too. Then, we'll test apples, bananas and carrots one at a time before introducing new foods. PLEASE pray this goes well and we can start building a diet for him. This is our last effort. If we can't build a basic diet for him, we'll have to go to an elemental protocol. That basically means we'll put him on liquid formula to give his GI system a rest and try to get him back on solid foods months down the road. I'm in tears at the idea because I don't think I have that left in me to do. I've been going crazy enough with the introductory phase of SCD and boiling foods constantly. We need to fight his development of new food allergies. As his nutritionist explained to me, once he develops an IgE allergy to a food, it's basically for life. I am not giving up hope yet, but prayer is definitely needed as that is our source of hope.
Our laptop crashed and I just got it up and running again. I owe a post about Kate's 1st birthday and what a true blessing she has been to us! And, I hope to get an evening in to just reply to a few weeks of e-mails. Thank you all for your prayers and support!
Bonnie
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My dearest Bonnie,
ReplyDeleteI know that has to be very difficult for all of you. I wish I could have been there this weekend to give you a big hug. I know you know this, but you are never alone. Remember the Footprints prayer. Somehow, this all fits into God's plan, it is just hard to see how. I have asked the staff and children at school to pray for Josh and all of your family.
I love you so much. I wish I lived closer so I could support you with more than prayers.
Love, Aunt Lynn
Hey Bonnie- I didn't know you guys had started SCD much less all the allergies that Josh has developed. I remember starting SCD and it was soooo hard. Drew cried all the time and wouldn't eat for two days. He finally started eating but he was starving and it was so hard to find things for him to eat (allowable) that he would actually eat. So, I completely understand how you feel!! I'm interested in knowing what tests you had run on Josh regarding his allergies. Did you do them after you started SCD or before? Also, how are you able to tell if he can tolerate a new food?? I was always terrible at that...still am. Initially, Drew was only intolerant to soy and gluten with no IgE allergies. I did that test almost two years ago. It worries me that he has developed more that I'm not aware of. Anyway, I hope things are starting to get better!! I can help you if you need any ideas with SCD because we've been on it since Jan 09. Then again, with a nut allergy...whoa....that's very, very tough!!!!!
ReplyDeleteWishing you courage and strength,
Joanna
You are definitely in our thoughts and prayers! What a tough journey. I hope in some small way, you can feel the love of those around you and know we are here! If you ever need anything - don't hesitate to call, email, or just show up!
ReplyDeletePraying for you to have strength and courage during these dark times.
Love,
Debbie
Thank you, Aunt Lynn! I am sorry we missed seeing you last weekend and hope you are feeling better. You have been incredibly supportive and it means a lot to me. Your love and prayers are felt! Love you, Bonnie
ReplyDeleteHi Joanna,
ReplyDeleteJosh's allergy test was the IgE blood test. We took it at the beginning of SCD because I had concerns about nuts and knew it would likely be a limitation to the later phases of the diet. I had no idea how many he would be allergic to! His DAN dr. did say that the tests are less reliable the younger they are and that your child is the best indicator of any issues. With Josh, we notice intolerances or allergies mostly by skin rashes or wheezing. Now on SCD, we're picking up some of the phase 1 foods that are causing diarrhea. You and I need to get together for breakfast or lunch now that the boys are at the same ABA center. We're using different means for healing, but a lot of similarities. I appreciate your support as well! You are an incredible inspiration to many ASD moms like me! I'll email you now about lunch. Take care and thank you! Bonnie
Hi Debbie,
ReplyDeleteYes, I can totally feel the love and support of friends and family. Having gone off the deep end in some respects with trying to help Josh, I am surprised how many friends have hung in with us. I know I must sound like a lunatic sometimes! Thank you! You have been so supportive as well, probably knowing more of what I've been going through before I knew what I was going through. I know you've been through a lot with your kids and I'm sorry I didn't have a better knowledge and understanding of what you were going through when you were. Praying your house closing goes through without a hitch and I'll see you this weekend!
Take care!
Bonnie