We Must be Our Own Advocates

Here is Husband walking Boomba up and down the ER hallways. Give a 2 year old a steroid and try to have him sit nicely for 3 hours... This brings us to today's story:

We went to the ER recently because after Benadryl and a breathing treatment Boomba's reaction worsened. We were unable to control it at home and it was going down hill quickly.

We were slowly admitted into an unnamed hospital and asked over and over again "He's allergic to what?!"

Finally a nurse phoned the on call Dr. who would be driving over shortly "He's allergic to Case Tracein" she said. I made sure to correct her "Casein. Trace Casein, Ma'am."

The nursed looked at him, lobster red, eyes swollen shut and giggled "poor thing...wonder what he got into?"

It took everything in me not to yell, I instead asserted "Casein. He's anephelactically allergic" (for the 10th time).

He was finally given a steroid shot and we were told to wait it out for an hour in the waiting room.

His condition worsened, thankfully the breathing treatment seemed to be holding. His airways were getting clear even though his poor little body was getting worse.

FINALLY the Dr walked out with a cheater book and asked (again) how much Bendryl I had given him. "1/2 teaspoon" I explained for the -literally- 7th time. "Oh. He can have 1 teaspoon."

It was my fault. I didn't realize Boomba had grown enough to be able to take a full teaspoon dose yet. This whole thing may have been avoided if I would have just given him the correct amount in the first place! Mom fail. I can't help but wonder why in the world no nurse or Dr gave him the full does as soon as we were admitted. They should have known. I should have known.

There were several instances that made it clear that the nurses and Drs did not know much at all about allergic reactions. You drive fearfully and helplessly to an ER and expect not only that they will take care of everything, but that you wont have to teach them what an allergic reaction is.

I asked the Dr at discharge if he would prescribe a steroid to ward off any reactions in the next few days. See, after a reaction the allergen is still in your system and you can have a flare at any time. Not only that, if you're exposed again, the reaction can be worse 7 fold. Dr's reply. "Well... he's had Casein before and was fine, hasn't he?"

TIME OUT

Were you here for the last 3 hours while I waited and talked to you in your waiting room? Do you know that you've been "watching" my son for 3 hours BECAUSE he was exposed to casein?

EXPLODE

Rewind to when we were first talking to the Dr:
"It's prime allergy season, could we give him a general daily antihistamine to head off these reactions- in case he's also allergic to an environmental allergen that's making his especially susceptible"? we ask.

Dr answers "well....uh. Those are pollens. He's allergic to....uhhhh.... food- right?"

I'll have you know we called his new allergist (we've recently moved) the day after this visit and the first thing they said is "Isn't he on a daily antihistamine?!" We have been to the ER two times, to two doctors and a nurse practitioner and this is the 1st time we've gotten a go ahead for a daily antihistamine!

I could go on. Seriously, "well trained" "professionals" have dropped the ball so many times it's disheartening. I hate being that person. I hate being that mom. It's not in my nature to be over protective. To prove this further, I won't even call to order a pizza. I just don't like it. I am not that person.

We must be our own advocates. It's sad. But we must. We must take responsibility. We must double and triple check. We must be the catalyst. By handling these situations with grace and appreciation we may be able to help raise awareness and education for this widely growing problem.

I know this is a more than HUGE vent. I don't blame you if you're not reading anymore- hahaha get it? It's funny because you ARE still reading... anyway.

But it really proves that this is a learning experience and if it weren't for God's grace and power we would be and have nothing. He is our sustainer. He is our comforter. He is our rock.

LUTHER'S MORNING PRAYER

In the name of the Father and of the Son and of the Holy Spirit. Amen.

I thank you, my heavenly Father, through Jesus Christ, Your dear Son, that You have kept me this night from all harm and danger; and I pray that You would keep me this day also from sin and every evil, that all my doings and life may please You. For into Your hands I commend myself, my body and soul, and all things. Let Your holy angel be with me, that the evil foe may have no power over me. Amen.

I wonder if there's a limit as to how much I can type in one post? I'm sure I'll have another chance to try again.

Milk can be found WHERE?

First of all, click here.
This website isn't aesthetically appealing and for a studio arts major it was almost an instant turn off. But, major BUT here! The information this link provides is eye opening and may be life saving to a severely casein allergic person!

The list goes on and On and ON!

Milk Protein can be found in several Dentistry products, Toothpastes, in some latex gloves, gums, sunscreens, cosmetics, lotions, medications, trans fats, and vegetable wax too. Scary.

This site explains that companies are not regulated to label for allergen traces. The warning "May Contain" is voluntary, not mandatory. That's why I have been known to spend whole nap times writing Thank You e-mails to companies that provide safe and efficient labeled products.

Duncan Hines box cakes are generally safe (I say generally because you can't just assume they are and not read the label every time). Companies change their recipes quite often. Companies manufacture in different facilities.

Oreos are a favorite that are casein free!

Pillsbury Aerosol Icing Cans seem to be safe.

Marshmallows are a favorite safe splurge.

Hershey's Chocolate Syrup- casein free!


This is an ill organized post. I was just trying to get the infomation down- quick.
For more information make sure to click on the link at the top of the page.

If you'd like to read about how We Must be Our Own Advocates, give it a click too!