Thursday, December 27, 2012

Erythema Multiforme - Take Two

Yesterday Julia appeared with spots all over.  Today, despite more benadryl last night, she woke up with more spots all over her body.  Especially on her legs and sides of her body and in the groin area.  Some of her toes/foot are swollen and her knuckles on her hands are red and swollen as well.  So I watched her all day and decided not give her any more benadryl to see if more would appear or if it would decide to go away.

Riley had a playdate with her friend Kiah so I knew that Kiah's mom, the nurse at our school, would be over to hang out.  I called and told her about Julia and said that I didn't want to cancel the playdate and if she was still comfortable coming over, we'd love to have them over.  Plus it allowed me to have more time to watch Julia to see what would happen as I was thinking that she probably needed to go get looked at.  Jo said that they'd still come over and hang out and that she'd look her over as well.

I called Julia's pediatrician and explained what was happening.  I was told that they could look at her and possibly offer her something else, but that they do not do epinephrine shots in the office.  That I'd have to go to the ER for that.

The playdate was a lot of fun.  The kids loved the Taj Mahal and legos and had a fun snack of bananas, apples and graham crackers.  Julia loved seeing baby Bishop who is only 7 months old.  One of the best behaved babies ever.  She was very aware of him and gave him toys and made sure his brother Deacon didn't take them.  And if he did, she would correct him with "That is the baby's!!"  and quickly give it back to Bishop.

Jo said that she would take her to the ER.  That she agreed that she did need something to be done and that hopefully they could give her an epinephrine shot.  We watched together as Julia's pink/red spots grew larger, spread more and started to appear everywhere and increase in number.

As soon as they left to go home, I gathered up Julia and Riley to head to Children's Hospital in Plano.  Julia took a 15-20 minute nap in the car and it was the only nap she had all day.  We arrived to find the waiting room packed.  Then we were told that there was a 3-4 hour wait.  Ugh.  Not what I really wanted to hear, but I did want to make sure she was looked at so that she could have a chance to get better.

We signed in and she was looked at by the triage nurses before sitting in the waiting room with hacking, coughing and snotty-nosed children.  We tried to find a spot where kids wouldn't be sitting next to us spreading more fun to our family.  Though I realize that we were breathing the same air so what else do you do.

The girls were incredible.  Riley played on her iPod and Julia mostly sat on my lap and talked about all the babies she saw in the room.  Two hours into our stay, my parents picked up Riley and I hung out with Julia.  Jeremy brought us some Chick Fila around 6pm - 3 hours into our stay.  We ate dinner together (did I mention it was our ninth wedding anniversary today?  Very romantic eating in a hospital waiting room - ;)) and then Julia's name was called.

We went to room 23 and explained why we were there in more detail.  The nurse said "And her condition hasn't changed since you got here?  No new hives, right?"  I said "Um - yes there are new hives.  These weren't here when we got here, the hives on her face are new and she continues to get more."  The nurse went her way and said the dr. would be with us soon.

The doctor came in and looked at Julia.  I took off her clothes other than her Dora Panties so she could see the full result of the spots.  And here is the conversation to the best of my memory:

Dr: Ok.  I see.  Can I feel your tummy?  How long has she had them?

Me:  Since yesterday morning. They are not responding to benadryl and she had the same thing earlier this year when she had a reaction to penicillin.  Broke out in hives everywhere. She finally got an epinephrine shot and it was the only thing that helped her get better.

Dr: An epinephrine shot is a very strong bullet.  I don't think she'll be needing one of those this time.  Her spots don't appear to be an allergic reaction.  It looks like it is a virus called Erythema Multiforme.

Me:  That was what she was diagnosed with last time and I ended up bringing her here because we stayed on benadryl and she continued to get spots.

Dr: Well, these are not hives.  They have a bull's eye look and are on her sides, groin and leg area.  Her feet and hands are swollen which is common with Erythema Multiforme.  Hives do not look like this.

Me:  That's what we were told last time, but these are hives.  And this is exactly what it looked like last time.  And the only thing that helped was the Epinephrine shot.

Dr: I'm not comfortable with giving her an Epinephrine Shot today.  It's like a very strong bullet.  Small dose that acts fast and makes her heart race.  And she does not appear to have hives.  This is a virus and the only thing you can do is wait a virus out.  She simply needs to have lots of liquids, some benadryl and tylenol to keep her comfortable.

Me:  So you won't give her a shot?

Dr: I am not comfortable giving her a shot today.

Me: She's had this before and I ended up having to come back to the ER for the shot so she could get better.

Dr: Well, it will possibly get worse.  What I mean is that the virus could still spread for a while and she'll continue to get more spots.  But it has to work itself out.  I realize it is the holiday season and that you waited a long time today, but you can always come back to see us.  We are open 24 hours a day.

Me: So no shot?

Dr: I don't feel comfortable giving her one today.

Jeremy: My wife likes to fix problems and she sees Julia's spots and just wants to have them fixed now.  Which is why she came.  But if it's a virus, we will just have to wait it out.

Me: Well, yeah.  Because they are hives and the shot was what made the difference.

Dr: I will get your discharge paperwork.

At this point, I am livid.  I'm mad that noone is listening to me and that I feel like the only person in the room who actually knows what my daughter needs and noone will listen.

They bring the discharge papers that indicate that she just needs benadryl and tylenol.  Ugh... did someone not hear that we've done that and it isn't working???!!!!

So I signed them totally frustrated and told Jeremy that I would not be surprised to be coming back again tomorrow or sometime sooner or later. On to watching Julia's spots spread and wishing I had stood up for her more.  Or that Jeremy had backed me so I wasn't alone and helped insist she get a shot.  Or that I had asked to speak with someone else.  Or that I had fought more for what she needed.

Instead we are home and we simply wasted over four hours and spent over $100 just to find out that she has a virus that can't be treated.  Ridiculous. So frustrating.  Here's to seeing what tomorrow brings...


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