Thursday, March 10, 2011

I Want to Quit!

I received a call from school today.  Owen's teacher noticed a rash on his face and tummy.  The nurse called to see if I wanted her to administer Benadryl.  I explained that Owen has had the rash for four days now.  It had appeared better this morning and so I wasn't as worried, hence why I sent him to school.

When Owen returned home the rash had definitely worsened.  After nap time it had spread to his arms and legs. Originally I thought perhaps it was Roseola or maybe Fifth Disease.  Owen had been sick.  I was wrong.  It turns out, Owen had broken out in hives.  He was having an allergic reaction to the antibiotics the doctor was giving him.  This is what I learned at 4:30 PM today at his doctor's appointment.


I took Baby L to his Communications Disorders Unit appointment on February 28th.  As I explained some of Baby L's symptoms to the CDU Specialist, she proclaims, "It sounds like he may have food allergies."  Just those two words, "food allergies" seem to haunt me EVERYWHERE I go, with EVERY CHILD I care for, whether they are my own biological children or foster/adoptive children.  How does that happen?

Lydia broke out in hives during her last antibiotic treatment as well, not because of the antibiotic, but because it was flavored with orange, one of her food allergies.  When I smelled the prescription I knew it would be trouble.  I called the pharmacy and asked for the ingredients.  They were unable to tell me the ingredients for the flavoring, other than to say it was orange flavoring.  Of course you can't take back antibiotics and get new ones.  So I took the chance and gave them to her.  Thankfully it was only a minor reaction, because the orange content was so small, but still...  ENOUGH!

Baby L started steroid nebulizer treatments two or three months ago.  I don't remember specifically.  The day he took his first treatment was the same day I gave him Tylenol for the first time.  About 4 hours after the first dose of Tylenol, I went to changed him and realized he had broken out in hives that were starting to blister.  They were all over his front and back, neck and spreading to his head.  Immediately I called the doctor, administered Benadryl and waited.  I took pictures of his back and tummy, just so I could believe what I was seeing.

Fast forward a couple of months and I decided to administer Tylenol a second time to see if in fact that was what caused the reaction.  Sure enough, as I stripped him at his doctor's appointment that very afternoon, only about an hour after the dose, he was covered in hives.

Benadryl is a staple in our home.  Just yesterday Adam received a dose.  He had somehow gotten a hold of Owen's Life cereal.  Thankfully there was no milk in it, or else we would have definitely been in far more trouble, but Adam is allergic to oats, which is one of the first ingredients.  Adam doesn't understand his food allergies.  He's two years old.  As I immediately move the cereal away from him, he exclaims,

"Mommy!  Yummy Life!"  Trying to stay calm I hold him and explain that life is "danger" as we put it in our home.  I tell him that it makes him sick.  This is on my way to the medicine cabinet to grab the Benadryl.  Adam sees is and shouts,


There is something wrong with this picture.  Adam LOVES Benadryl.  I'm sure it makes him feel great, but I worry that he likes it so much there may come a time where he does really stupid things just to get some.

Just a week before, Adam had another dose of Benadryl because he got a hold of a sticker that was sent home on one of Owen's papers from preschool.  Seriously, does anyone else live like this?

I am exhausted.  I want to quit.  One can't quit being a Mom of a child with food allergies, or any other special dietary need or special medical need, but sometimes, on days like today, I really wish I could.  What I would give to just take it all away.  I forget what it's like to live a life free of food, medicine, and an adhesive allergy.

The highlight of my day was finding out that the special needs preschool in our town is officially accepting Adam on a trial basis of one hour, two days a week next fall.  They won't accept him as a full time student or as a part time student.  It's too dangerous for him and his allergies.  The school would have to rearrange a whole room for Adam and eliminate many of the activities they do throughout the day.  Teachers feel it's not fair to the other children, to limit them so much.

What about Adam?  He doesn't even get a choice in what's fair for him.  His life isn't fair.  It is so sad to me that Adam's trial to preschool is the highlight of the day.  I am grateful, don't get me wrong.  We were pretty sure we would have to home school him, until our pediatrician, the medical director of the special needs school, arranged a meeting with the head administrator, the nurse, him, and myself to advocate on Adam's behalf.

The children's allergies are overwhelming at times, especially as more and more are discovered.  I feel like a crazy woman to others, even to the nurses at the doctor's office every time I call about another reaction from one of the kids.  They know I'm telling the truth, it's just that it's so unbelievable.  One of the nurses said to me last week,

"I can understand your own children, but the younger two aren't even yours!  I mean, come on!"

Anyways, I needed to vent and shed a few tears.  I truly am in mourning over Owen's allergic reaction today. Part of me feels stupid for not knowing what it was, but then another part of me is in so much denial about there being more allergies to diagnose, that until our doctors says it's an allergy, I won't believe it.  Hopefully I'm not the only one that's felt this way, perhaps the allergies or diagnoses are different, but I mean the wanting to quit part.

Please share your story, if you have one!


  1. I've had days when I'd give anything just to have a day off of living in the allergy world. People that don't live this life can't even begin to understand. Although I'm grateful for the many people who sympathize and show us kindness. It's just a constant worry. I can't imagine having 4 kids with these issues. Heavenly Father knows that only you & your husband are capable of caring with these children. You are who these children need. You are the perfect one to fight for their rights. I promise it gets easier as they get older. For now.... grieve when you need to grieve. Try to get out of the house and eat as many nuts and play with stickers for an hour and then scrub yourself clean before you go back home. ;) I find time away by myself enjoying something forbidden does the trick to put my perspective back. Hang in there but don't beat yourself up too much. We all get down sometimes!

  2. I am sorry it is so difficult. I do understand, though I do not know the allergy world, I sometimes wish there was an immediate obvious reaction so that I would really know for sure what was actually bad for her and what was okay. The never really knowing for sure is so hard on me sometimes, and sometimes I just give in to something on the no list, only to agonize that I am causing her brain damage and organ damage and who knows what else, without even knowing it... And though I don't exactly know the constant fear, worry, and frustration of additional allergies showing up, I do have the frustration of different specialists telling me conflicting information, and things that are perfectly fine according to one are detrimental according to others. I always have this fear of the unknown, that no one really knows anything and I am probably doing at least one thing that is harming her, and keeping her from something that is perfectly fine for her. Then on top of everything else is the agony of knowing that no matter how strictly I stick to her diet, that she can and most likely will suffer many problems anyway. I just have to take it a day at a time, and just look forward to the day when it is her responsibility to make her own decisions on her diet.

  3. So glad for your comment today on my site. I know that feeling, and I'm dealing with so much less than you. Sometimes, I just get tired. Sometimes, I just want to go out for ice cream like a normal family. Sometimes, I just want to be invited to a b-day party and be able to hand my daughter the piece of cake like everyone else.

    Look forward to following your site! Sometimes, you need a reminder that your not alone!

    Feel free to link to me if you would like!