It is awesome that Gage and Tinleigh are eating now. As of today Gage has added apple, buckwheat, corn, pickles / cucumber, VeganEgg, squash and oats. Tinleigh is up to banana, corn, squash, potato and pear. Tinleigh tried pickle and coconut but had a reaction to both. When she tried pickle her bottom lip swelled up and with coconut her throat felt funny she told us.
What I completely forgot about was how hard it is to cook for all the people! I try to make fun things for them to eat so they get the full spectrum of foods with what little they have. I’ll tell you what though, it’s tough. Every recipe is 50 different ingredients. The dishes pile high and then it feels like you’re starting all over again.
I have successfully made Gage some buckwheat cornbread. Just to see the smile on his face when he eats it defiantly makes it all worth the while. He’s also had buckwheat pancakes and buckwheat apple cinnamon muffins. I think he’s in heaven . I tried to make Tinleigh some banana coconut muffins but those bothered her throat. She’s loving corn and we had totally forgotten about corn pasta! Huge hurrah for that. She keeps telling me she is just having the best days of her life because she can eat different foods. Makes my heart smile and break all at the same time.
I’ve found them dried fruits to snack on along with safe fruit leather. Gage can eat crackers and they both have noodles now. It’s all so exciting to them. Potato chips, corn chips and popcorn! Things every kid should be able to enjoy.
On the new news front we had Layton’s allergies tested. She was so cooperative and brave. Poor thing had no idea she was about to be pricked 50 times. She didn’t even cry out. She did hit me twice when it was done though and that’s okay. Lucky for her only 3 things showed up; clam, oyster and flounder. She’s eaten fish sticks and snuck some of Charlie’s shrimp before but never had a reaction. Her testing was so small they said just use caution. Well I don’t think she’s a huge oyster fan so I doubt we’ll have any trouble telling her no. We still plan to scope her in April and see if anything is going on in there.
Tinleigh had a huge reaction to playing with play dough so that’s completely out now. She’s had smaller reactions here and there. Sometimes even played with it and didn’t have a reaction at all. This last one really got her so I told her no more. She wishes play dough was never created.
Tinleigh’s airborne reactions seem to be under control. She did have some freak eye incident a few days ago. Her eyes just swelled up. I have no idea why. We threw her in the shower and gave her some Benadryl and she cleared up. You never know who’s going to react to what here.
What I’m most excited about soon is spring break. We LOVE the beach and the beach loves us. It will be even more awesome that this year we can actually go out to eat. We never do because it’s just too hard to eat in front of them. This year I can pack them food and everyone will get to eat together!
Gage was scoped in December the same day as Charlie. We had tried to take Gage off his steroid when we took Charlie off his, but Gage started choking and coughing a lot so he went back on it. Before this scope we had removed wheat and oats from his diet because of his horrible bad scope in July. So we were really hoping there would be improvement.
It took a little longer than usual for the GI doctor to call me after their scopes so I called her. She gave me Charlie’s news with great enthusiasm. Her mood drastically changed when it was time to talk about Gage. Gage’s scope was still very bad and that is why she hadn’t called me. She didn’t know what to do and was trying to figure it out. His mid esophagus had 14 eosinophils and his distal was 54+ and there are fibrosis. Fibrosis is the hardening of the tissue which is what we are trying to avoid and the reason we do special diets trying to find the trigger foods. I got very upset. So it’s more than the wheat and oats that’s causing Gage’s issues. I told her that the only other food he’s eating that was removed before is corn. She reminded me that his patch test came back positive to pork and green beans. So after a long discussion she left it at we remove pork and green beans and keep him on his steroid twice a day. We’ll re-scope him in 3-4 months. At that time if he isn’t better, then we’ll remove corn. So Nathan and I had a talk that evening and we talked about why waiting to take out corn, because that eliminates a lot of everyday things for him. We then decided that we would let him try potatoes. If he did ok on potatoes then we would take out the corn. If he has a clean scope next time we know it’s probably pork, corn or green beans. If it’s a bad scope then we know it’s potatoes.
Gage is currently off the following foods:
peanuts and tree nuts
It’s tough. Although having potatoes allows him to have a few flour mixes and cake mixes he couldn’t previously have because of the potato starch. Now if he could just have rice our world would be so much easier.
Wednesday is Fun with family and friends.
My Challenge for you is to eat like us for a day! Here’s your list of do not eat foods: wheat, soy, sesame, rice, oats, mustard, beef, all fish, chicken, celery, corn, peas, green beans, onions, garlic, eggs, potatoes, all nuts, pineapple, all melon. Make sure and read those labels!
So being off corn for 3 weeks Gage flared up again. Face, butt and diarrhea. Poor guy. What could it be this time? We’re thinking oats or rice. Both have a very low positive. So he’ll come off rice and oats until he gets cleared up then we’ll reintroduce them and see what happens.
Blood results in and Dr says corn is negative. Rice is still a low 1.2 and oats is a 1. With both of those numbers being low and I’ve never seen a reaction we keep him on them. I argued about the corn and the Dr said we can do a test in office to see how he reacts to corn. He doesn’t want me to take him off corn because there isn’t a lot left with out it. I already know this. Dr says feed him corn, I will feed him corn.
So today at lunch I pull out a jar of baby food that is a safe veggie blend for him with corn. It’s all organic too. An hour later, diarrhea. Three hours later his bottom is starting to get inflamed again. I also gave him a popsicle (corn syrup) and his face flared up some more. It hasn’t gone away since this new stuff popped up. So Dr. still don’t think it can’t be corn. *gasp* I guess I have some anger. I told my husband tonight that I knew when Gage was allergic to soy and the Dr doubted me. BOOM big time allergic. I’m pretty sure I’m right this time too.
Not the most flattering picture of him but you can see how’s he broke out. It’s not eczema. It starts out as little dots, like on his forehead. Around his mouth the dots are becoming more dense in certain areas. I was told they are more environmental. He really doesn’t have any environmental allergies. Two came back positive: Russian Thistle and (get this) COCKROACHES! Who in the world is allergic to cockroaches?
Hopefully the GI Dr can give me some more insight as to what’s going on. I’m very nervous now about rice and oats because who knows what’s going to make his throat swell more.
We did a blood test on Gage today testing for : corn, rice, chocolate, oats, chicken and all environmental elements.
He tested negative on the skin prick test for all these back in Dec. Except the environmental, we’ve never tested on that stuff. So hopefully the blood test will give us some clue as to what’s going on with him. We are not going to give him corn until we get the results. We’ll keep rice in the diet. It actually tested positive back in December but we’ve never seen a reaction to it. Next week we’ll have the results.