Posted by: twinturbo
« on: January 28, 2014, 02:05:19 PM »You're not alone. My youngest first anaphylaxed at 7 months to barley which is very rare. Since then it's been cow's milk, all closely related grains to barley (wheat, even oats), beef, temperature change (systemic), and most other top 8 allergens test highly positive, plus severe sensitization to dust mites. To make matters more obscure he is dermatographic rendering his skin tests nearly useless because even his control is reactive.
Oral challenges are not very practical to us at this point because he is developmentally delayed in speech making a challenge merely pumping him full of substance until very serious signs of anaphylaxis show up. So we're at a tough spot as well.
It's hard because there's no treatment but everyone who doesn't have to actually caregive 24/7 wants to inform you on how it's not so bad.
Yes, I do believe we can determine some sort of stable, nutritious diet that can help keep down the hospital trips enough to get some stable time in which you can say, yes, it's time for a controlled introduction schedule based on what makes sense for this child's allergen list and nutritionally.
But sometimes you just need to say wow, we're going to ER every six weeks (it was a cluster of bad luck for various family members) the family needs some time at home being a family with a routine. Some spacing before taking on more risk.
Oral challenges are not very practical to us at this point because he is developmentally delayed in speech making a challenge merely pumping him full of substance until very serious signs of anaphylaxis show up. So we're at a tough spot as well.
It's hard because there's no treatment but everyone who doesn't have to actually caregive 24/7 wants to inform you on how it's not so bad.
Yes, I do believe we can determine some sort of stable, nutritious diet that can help keep down the hospital trips enough to get some stable time in which you can say, yes, it's time for a controlled introduction schedule based on what makes sense for this child's allergen list and nutritionally.
But sometimes you just need to say wow, we're going to ER every six weeks (it was a cluster of bad luck for various family members) the family needs some time at home being a family with a routine. Some spacing before taking on more risk.