So glad you have a diagnosis that will get her feeling better. My cousin's husband had Guillain Barre last year and has made a full recovery despite total paralysis, so hopefully your daughter continues to kick its butt and they manage her pain.
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.
Post by InBetweenDays on Jan 27, 2015 13:26:07 GMT -5
How frightening and upsetting that must be to see your daughter in pain like that, but so glad to hear they have figured out what is going on and she is doing better! Continued thoughts that things continue to improve.
Post by imojoebunny on Jan 27, 2015 13:38:03 GMT -5
{They are treating her for Guillain Barre syndrome.}
That is a freakishly weird virus to get. I hope it runs it's course quickly and she gets back to her old self fast. It sounds like she is doing extraordinarily well for that nasty virus.
My uncle has had Guillain Barre twice (I posted about him getting it while in France a few months back. He was life flighted back to the US after a month) He just got moved to a rehab after being in ICU for 3 months (he got stuck on the vent for a long time.).
Is is she able to breathe ok? Eat? Move? Do there expect that she will regain full muscle control?
Its so rare that there are not a lot of cases, and no case is the same, but she is really lucky to be able to laugh and move and it sounds like the treatment is working so quickly. My Uncle could not even talk either time for long periods. The first time, he was in ICU for a couple of weeks. He still has a feeding tube in rehab, but he no longer has a trach.
The good news is the odds of getting in twice like my uncle is something greater than 1 in a million.
How scary, but I'm glad you've got a diagnosis and plan and that she is on the mend. Make sure to mention to any physician going forward that she has had this - they always ask on the form for flu vaccines if you've had GBS.
{They are treating her for Guillain Barre syndrome.}
That is a freakishly weird virus to get. I hope it runs it's course quickly and she gets back to her old self fast. It sounds like she is doing extraordinarily well for that nasty virus.
My uncle has had Guillain Barre twice (I posted about him getting it while in France a few months back. He was life flighted back to the US after a month) He just got moved to a rehab after being in ICU for 3 months (he got stuck on the vent for a long time.).
Is is she able to breathe ok? Eat? Move? Do there expect that she will regain full muscle control?
Its so rare that there are not a lot of cases, and no case is the same, but she is really lucky to be able to laugh and move and it sounds like the treatment is working so quickly. My Uncle could not even talk either time for long periods. The first time, he was in ICU for a couple of weeks. He still has a feeding tube in rehab, but he no longer has a trach.
The good news is the odds of getting in twice like my uncle is something greater than 1 in a million.
I'm so sorry to hear about your uncle! I have a close friend who had it as an adult 2 years ago and it was 6 months until she was normal again. The staff here has told me that it's much harder on adults than children. They are going to give her another dose tonight and we might be able to go home on Thursday ish. They said it might be 2 weeks until she's fully walking again.
I have not heard of that before. The allergic reaction to Motrin came up like three months after his original hospital visit when talking to his allergist(His upper lip swelled up a lot and the doc said he was anaphylactic at the ER- we could not tell. The sweeping didn't go down, so we were admitted and stayed three days). I am going to look into it!
Sorry to butt in, but have they tested him for Chronic Urticaria? (Chronic Hives). That could explain the hives that show up for no reason then go away.
He was never tested, but that term has been thrown around.