Well, we spent about 4 hours of our day today in the ER with Victoria.
She woke up this morning and her rash was 100x worse than it was yesterday. I called the pediatric infectious disease doctor's office. Unfortunately, one of the doctors was off and the other one was seeing patients at a different location about an hour from where we usually go. Because of this, they told me to take her into the ER. Our doctor called ahead for us and also called Dermatology to come down and look at her. The concern was that she could have a severe drug reaction called Stevens Johnson syndrome, which can be fatal.
Thank God, after seeing the dermatologist, he does not feel that she has Stevens Johnson syndrome. He feels it is a very severe case of Erythema Multiforme, which can present very similar to Stevens Johnson when it is this bad. The difference is that none of her mucous membranes are affected which is good news. I won't go into Stevens Johnson too much, but I did read about it and it is very scary so I am so very thankful that they do not think this is what Victoria has.
Victoria has been such a champ through all of this. She is feeling really good since stopping the meds but is a little itchy from the rash. The dermatologist gave us a prescription for prednisone. They gave her a dose in the hospital and I think her rash already looks somewhat better. It isn't going away, but it doesn't look as red and swollen. Hopefully the prednisone will do the trick and will stop the progression. We have a follow up visit with dermatology on Tuesday.
The doctor that was off today did come in to see us in the ER. She is hoping that we will be able to find a better drug combination for Victoria and that she will tolerate it much better. Since it looks like most of her symptoms were related to the allergic reaction and not necessarily side effects, if we can find something she isn't allergic to we hope she will not deal with the same symptoms. Some of the nurses and social workers from the group also came over to the ER from the office (across the street from the hospital) with Oreo's, coloring books, crayons, books, etc. for Victoria. They are so great there and really take good care of us!!!!
Victoria really impressed the ER staff when she popped the prednisone pill like it was nothing! It was only a fraction of the size of the other pills she had been taking, so no biggy! She really is an amazing, amazing child. She takes everything in stride.
So, prayers that she is finally on the mend from all of this and that this past week will be history that will not repeat itself.
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Wow Jaime. How scary - I'm praying for you guys. Victoria is a champ, what a brave little girl.
ReplyDeleteYou and Victoria are both handling this so well! I would be a basket-case. I REALLY hope they get this all sorted out QUICKLY. She's tough!
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