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Food Allergy
macaroni1979
member
twoasone and abc
macaroni1979
member
in Food Allergy
I need to vent to you ladies! Do you ever feel it is just safer if you don't leave the house??? I feel like I can't go anywhere because Asher is constantly getting into something! We were playing outside at the IL's in a baby pool and Asher is trying to fish flower petals out that have fallen in and eat them. Everything destroys this child's tummy, I can't risk him eating a flower petal or crawling around on someone's floor and finding crumbs. I really feel like never leaving my house again!
MIL boiled carrots for him and put salt in the water, which pissed me off. He has been crying on and off for the last hour, and I am wondering if this is why or what he managed to slip into his mouth when I blinked my eyes. I clean my floors constantly, and even my toddler is good at where she keeps her sippy and always helps to clean up any food she has dropped. Its like she has a better understanding then my ILs do!
Also, I'm not sure we ever discussed your LO's symptoms when they eat a "bad" food. Asher usually gets a rash around his mouth, eczema and then awful stomach pain. His GI issues are a delayed reaction and only happen at night, no matter what time he ate the offending food. He cries in pain for hours, it is truly heartbreaking. I wish we didn't need to try out new foods, I think I might finally be okay with him being orange (his safe foods are carrot, squash, apple and most recently, sweet potatoes.)
One last question, what did you do for their 1st bday? I am so sad he can't be normal for one day and eat cake, but I don't need to explain that to you both. Double whammy is that it is a joint party for his sister too, so obviously he will see cake and what she is doing 
Josie Cailin 7/25/08
Asher Mason 7/19/10
This discussion has been closed.
Re: twoasone and abc
Vent away! I feel your pain. We were at a birthday party in February and the little boy had one of those snack trap things filled with cheerios. Well he kept dropping them everywhere and DS would pick them up. I had to be a helicopter parent the whole time. Then my friend, the childs Mom who was dropping all of the cheerios, realized what was happening and took them away and tried to pick them all up. Then of course I felt bad, ugh, it is a no win situation.
Usually Ds is pretty good about not putting random stuff in his mouth. Because of his EoE and other issues he has had a pretty bad oral aversion. He is just getting to the point where he begs for our food. We have ended many meals in tears. Sometimes I wish that we could all just eat the same, but my husband and I can not live on carrots, wheat and formula. Sometimes I put a piece of carrot or something on my plate and feed it to him off of there. He seems to like it better coming off of my plate.
DS symptoms are delayed as well. He gets pitichi (sp) rashes, refuses to eat his formula (we then 'tube' him), vomits even though he takes medication for that, constipation, lethargic, etc.
On DS first birthday we had a regular cake for him because we didn't have a diagnoses yet and didn't know he had allergies. He wouldn't eat it anyway even though everyone tried to get him too. He ended up crying. This year, we are coming up with a 'cake' for him out of his safe foods. We are trialing pears right now, so if he can keep those and we find one more before his party, we should be able to come up with something. A lot of his doctors and dieticians have said that plain sugar should be a safe food as it does not have protein in it. We may give that a try, just mixing sugar and water for a 'frosting'. I will let you know what we come up with though. I have seen a lot of other ideas to, I will try to find them and pass them on to you.
Good luck and I know how you feel. We are going to a bbq today and I just know someone who doesn't understand will try to feed him something. It stinks to never be able to let your gaurd down.
So glad you understand! Even if he does have an eosinophilic disorder, your son's is more severe than Asher's, so I feel bad venting to you...but I also know you have about a year's more experience than us. I wish there was something I could make with his foods for the party, I tried a popsicle, but he hated that he couldn't actually eat it and cried.
What are your son's rashes like? Asher has a ton of patches of little bumps everywhere right now, and spots of eczema that have grown over the last few days, but I haven't changed anything??? These boys are so confusing!!! And here is another weird thing, he has spitting up about once a day, even on 20mg of prevacid. The spitting up started about a month and a half ago, before that, he hadn't spit up since he was tiny. I am constantly wondering if all these little things are related or not?
Oh, don't feel bad. Even if DS are worse, it doesn't invalidate your feelings. It is so hard to see your child in any kind of pain and not be able to make it go away.
What are some of his safe foods? Maybe I could help you come up with something?
DS rashes are pitichial rashes. They are groups of several red spots in one area that are actually burst blood vessels. They appear on different places on his body all of the time. His liver enzymes are also off, and they think it may have something to do with that, but they don't know what it means yet. So frustrating. Could your DS maybe be from a slow developing allergy? Like maybe he is slightly intolerant to something and it is just now causing him to have a rash? I know DS don't appear at once.
DS used to vomit and spit up constantly. We finally found the right combination of drugs for him, and he hasn't had any problems with it since. He is on 3 mls of prevacid compound twice a day. Once in the morning before his first bottle and once at night before his last. At those same times he also takes .03 mls of Neurontin. Neurontin was a trial his dev. pediatrician tried. It was orginally developed for kids with seizures, but they found in something like 30% of kids with frequent vomiting it helped. .03 mls twice a day was the lowest dose, and she was sure we would have to increase it, but it has worked great at that low dose. I don't know if it is something for you guys to consider, but it is what worked for us.
Has he had a swallow study or anything done? If he does have an EOS, than the spitting up can most likely be attributed to that. He is on Altimentum isn't he? Is that an elemental formula? I only know of Neocate and Elecare being elementals.
Okay, I hope you had a good day. I am glad we have each other to bounce ideas off of!
Sorry I'm just seeing this. I'm actually waiting for my hubbs to get home so we can take Asher to urgent care. He has a high temp..ugh.
To answer your question, yes! Absolutely...I'd love to just lock out the rest of the world and have control over everything he could possibly pick up and put into his mouth! Its terrifying. To the point that I stayed home until he was a year old because I had nightmares about putting him in daycare. Nightmares. Even now I've only gone back to work because I really have to and my sister, who had very little interest in watching him because she has two young kids of her own and goes stir crazy, watches him for me because I cannot trust anyone else to take good care of him. I figure as his aunt she has some investment in keeping him alive. But I worry about him all day long.
Even we make mistakes. At his first birthday party, he was sitting away from everyone else and someone put a cupcake down on his tray while they went to chase after their kid. Can you imagine, I wasn't in the room, but my husband almost had a heart attack. They have it on video, I think the words "What the fuuck" came out of his mouth as he was diving for the cupcake.
Then my brother in law or someone must have brought a peanut home on his pants and it came off in the baby room. Of course Asher found that tiny little peanut, it made it to his lips and no further...and he looked like jabba the hut. I can't tell people they can't eat food...but it wracks my nerves that little mistakes like that could end my child's life.
And of course I want him to have a normal life, the same opportunities as other kids, and there are parents who think that kids with severe life threatening allergies shouldn't be allowed in public schools because its such a hassle for them to sign a peanut free contract or for the school to have an allergen free lunch table. It scares the shiit out of me that people take my nightmare so lightly.
To address your last question. I don't think my Asher's allergies are as bad as your Asher's. (Dairy, Casein, Beef, Shell Fish, Soy, Wheat, Egg, Tree Nuts, Peanuts, Assumed All Major Allergens for Oral Allergy Syndrome) Thats what we know so far. The only meat he is cleared to eat is Turkey. We don't know about oats and we haven't had a food challenge for it yet. For his birthday I bought a Vegan, Gluten Free/Wheat Free, Egg Free, Soy Free, Dairy Free, Nut Free, Coloring Free Cake. It was $$$$$ and tasted like crap. But he loved it. And didn't react to it. I could find the label if you're interested in the ingredients, I saved it to show his allergist. If you look at my siggy, you'll see his pic with his face covered in that nasty cake...which I will never take out of my siggy because I was thrilled that he could have something that other kids get ya know?
Oh, Abc, my heart goes out to you, I just cannot imagine how terrifying that must have been. I wish I could get a nasty cake for him, I would pay all the money in the world for a chance to see that. But, we really haven't moved out of fruits/veggies yet. And the few times he has tried real food (with multiple ingredients) those were some of the worst for him. He eats apple, carrot, squash and sweet potato in every form, baked, boiled, pureed, chunks, grated, anything to keep it interesting. I wish I could figure out a way to make a cake with those things! I wish I could understand why those foods, there is like no rhyme or reason. Like he can handle sweet potato, but not regular potato, wtf?!
It's good to have you girls to talk to you, strength in numbers! If you both would like to email, I'm in!
DS is trialing pears right now (keep your fingers crossed) and he can eat carrots as well. So far our idea for his cake is to use the pears ( you could use the apples made into an apple sauce consistency) as the butter and egg subsititute and then the carrots to make it like a carrot cake. Is there any chance you could try some kind of flour between now and his party? DS is allergic to oats, but he can have wheat. But we have to go to the food co-op and get straight wheat kernels (right off the the stalk) and then I grind it at home for his flour. Just an idea. If you could find something to use as a flour of some sort, you could totally make a cake! It probably wouldn't be one that you and I would enjoy, but I bet our lo's would. That is why I am praying Will can keep pears right now. For the frosting, we are just mixing water with a touch of sugar. All of the research I have done on EoE says that plain sugar should be fine because it has no protein in it. It will be more like a glaze then instead of a true frosting, but I will take anything at this point.
I am in on the e-mailing as well. jmchittle @ hotmail.com
Guess what? I just discovered sweet potato flour! So maybe I can make a cake??!!!!! I really hope pears go well for him, I have everything crossed for you guys! What do you do with the flour you make for him? Does he like the pears, or is he afraid to eat them? How many days is a trial? Lots of questions for you, lol! And, I will email you tomorrow!
alisonymacaroni at gmail.com