Tuesday:
12:16am: Fever check, feels cool or even cold. Cover up better and go back to bed.
2:34am: Claire wakes up screaming. No fever, no anything I can understand. She is scratching majorly. Give Benedryl and put back to bed.
8:45am: get out of shower to screaming. Run towel-naked into her room. No fever.
"old (hold) me, Momma, old me!" I pick her up.
"down, down, down!" I put her down.
This goes on for 20 minutes. She is scratching violently. Still dripping wet and wondering if that is adding to her scratching (you know how water dries and makes you itch sometimes?).
I look at her legs: COVERED in bloodied scratches. Rash is back around her joints (knees and elbows).
Dose her with steroids and Benedryl. She is still screaming. Won't calm down. Won't eat or drink. Thrashes and tries to scratch. Dress her like mummy to prevent scratching. SCREAMING! I can't handle it anymore. Put her in her room and close the door. scared to death and worried I'll smack her cause the screaming won't stop! How could I?! Why do I even think such things!?
Running through my head what might help. Call Nick. Give her bath, hoping to maybe wash away what's making her itch. Call Nick. Rash more noticeable in water. Freaking out. Call Nick. Call original doc. She calms down some. I get her to eat some cereal (bribe her is a better word). After eating, she gets better.
Dress like mummy again. She rolls on the ground, thrashing, trying to scratch. Starts to pull chunks of hair out of head.
45 mins pass since dosing. She calms all the way down and notices my tears. Brings me HER blanket and kisses me, wipes at my tears.
No idea what happened. I think the steroids are really strong and they wear off between doses. Doc also told me that the steroids themselves can cause psychosis. People literally see things and feel things on their skin. So would giving her another dose cause her to calm???
Am literally emotionally exhausted. Don't know what to do. Is this pseudo serum sickness the right answer????? Called doc from Primary's. The only other thought might be Still's disease. Which they would treat with the same medicine. Scares me too, cause it's still an autoimmune disease. Doc said rash is different from typical rash that indicates Still's, though. Everything else fits that I can find.
Nick comes home with lunch. I'm at wit's end. He puts me to bed and turns on movie for Claire. She comes wandering up about 10 minutes later. Finds Momma and says, "Up, bed? Momma seep-in (sleeping)?" She falls asleep next to me for about 45 mins. Now she's asleep and I'm here. Tearing my hear out.
Sorry this blog has become my sanity. I vent here so I don't do something stupid.
9 comments:
Oh Deb. I wish I was closer to give you a hug and a much needed break. Don't beat yourself up, your a good mom.
Keep going...you'll figure it out and it will get easier. Also keep blogging, it will not only keep you sane, but it will be nice to see how far you've come.
I'm so sorry Deb. :( I'm praying Claire gets better soon.
You are a good mom Deb. I have totally had moments where I just had to trap Josh in his room so that I wouldn't smack him. I think probably every mom has felt that way, even if they don't want to admit it. We'll keep your family in our prayers.
Oh, wow. I'm so sorry. What exactly is psuedo serum sickness? I hope those docs can figure it out quickly! I'm praying for Claire and you and Nick.
Hi Deb. You are an excellent mother and sometimes we go through things to make us stronger. You did everything in your power to handle the situation and I'm glad that the situation didn't get worse. How's the child now? I hope much better. Wish you all the luck!
I don't know you, just ran across your blog. However, I see a rheumatologist for fibromyalgia and other pain. I'm also a mom.
A few years agao, my son did not have the pain, but did have a rash that was all over his body. At first we thought it was related to strep throat. That is because once when he was younger, he did develop a rash because of strep throat that we did not know about. Doc said something about a relationship with scarlet fever...but antibiotics and all was well. We had no idea he even had strep throat!
The most recent time we discovered was due to oral and ointment steroids. It even appeared once after taking him off the steroids. But a few days later it was gone and never returned.
I just want you to know this because it might help to know other parents have gone and do go through these things and it IS nerve-wracking and it IS upsetting.
You did great with having presence of mind to leave the room when you were getting upset. That's a sign of a good mom - when she can take a time out for herself and then go back to help out better.
Again, we don't know one another. But I hope the doctors are able to help you. Soon.
Will keep you in my prayers.
Dear Deb,
Hang in there, honey. Hopefully, Claire will start to feel better soon. Your feelings are totally understandable but just know we are all wsupporting you and love you much.
Deanne
what a nightmare. I hope you figure it out soon. and when you vent we know what to pray for. so keep it up.
We are praying for you guys. Please let us know if we can do anything for you. We love you.
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