I posted that DD2 had a strange rash last week. It didn't get better, and then she stopped wanting to walk or stand up unassisted. She's been up all night for 2 weeks crying "ow ow ow".
I took her to urgent care on saturday and they sent me to the children's hospital, where we are now on day 3. They've done tons of blood tests, X-rays, spinal tap, brain mri and full body spinal mri, all the tests have come back good/normal. So they've decided that it isn't all these horrible sicknesses...but still no idea what is is. Next step is nerve testing today. Luckily we have a wonderful children's hospital in our city and they are being very proactive.
I'm a wreck. I don't like hospitals and I don't handle stress well when I'm not sleeping. I'm trying to stay strong but it's hard. I'm so nervous and scared. DH has been here with me the whole time but he left today to go into work real quick. My friends are being awesome and bringing me my favorite food which is really helping me feel semi-normal.
Any good thoughts or prayers that you can spare are appreciated.
UPDATE!!
They are treating her for Guillain Barre syndrome. Basically, it's when your body makes antibodies to fight off a cold, and the antibodies fight your own body. It's painful. Temporary paralysis starting in the feet and moving up. It's a 3-5 day IV treatment, minimum.
I'm happy that there's a diagnosis and that it's relatively easy to treat, and that hopefully we can ease her pain. I've got grandparents and friends lined up to care for my older daughter while I stay at the hospital.
I teared up when I saw so many responses in this thread. I feel like I get a lot of shit when I post here, it really helped me today to feel so much support. Thank you all.
ANOTHER UPDATE! They started the IVIG medication last night and it was the first night she didn't wake up crying "ow ow" in 2-3 weeks. She woke up happy and laughing this morning. She'll get another dose tonight but all of the doctors are very happy so far.
I remember you talking about her rash! I'm so sorry this is happening but you are in the right place. One day at a time. I'm glad you have a good support network there.
Thoughts and prayers for you and your little one! I'm glad they're ruling out the big stuff already, and it hope you find the final answer soon. Is she feeling any better?
When your child is undiagnosed, it's so so scary. Thinking about you. Don't be afraid to push for a transfer to a bigger hospital if you think you may need it, or that specialties that haven't been consulted be brought in.
Post by oregonpachey on Jan 26, 2015 16:07:56 GMT -5
I am so sorry Jenn. I hope you get some answers for your DD soon. And, if you need anything, please let me know. I don't live too far from Randall (if that is where you are) and can stop by even for coffee.