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She is on day 5 of the steroid taper. I just talked to the doctor and said I thought I saw her get a bit better for a couple of hours but the next day she was super bad again. He said that he does not understand why. He asked if she was on an antibiotic and I said no. He said why and I said because "you never told me that she needed to be on one with this taper" Man, why do some of these doctors assume that you know all of this!!! He wants her on this same dose of steroids for a few more days while starting bactrim. Please give my any feed back that you have. It just helps to talk to you.

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I say, get her on the antibiotic as soon as you can, and hang in there!

Is she eating well? Are her bowels moving?

I ask, because when my dd6 did a 4 day steriod burst, her eating went way down, it was hard on her tummy.

I know your dd had/has some gut issues (the bacteria, clostrida, right?) how is that doing? Are you on probiotics?

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she has no appetite on the steroids. i told that to the doctor and he said she has to be eating more....i told him, really she is not eating. i swear. she would go all day without food if i let her. she keeps telling her therapist that her mother is a pain for pushing food on her all the time.

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I can feel your pain and I'm so sorry. I think you should keep up the steroids otherwise you'll never know and will be doubting yourself forever. Whatif?

 

My son has these seizures/panic-attacks/movementdisorder/whatever-you-want-to-call-it (long story) Last 2010 mother's day weekend they hit him every 15-30 mins 24/7, and he was suffering. I took him to the ER and they wrote a prescription for Diazepam (Valium) to help him until Tues neuro appt and for increase in Keppra to take effect (it takes 3 days). It really calmed him down so that he could rest and conserve his energy. He'll lose 20 lbs in a week and he is already slim.

 

I give him WHATEVER he wants to eat - don't care because I know he needs the calories. He loves fast food because I restrict it but there comes a point where you know they just need calories. Icecream a/o protein milkshakes etc. He uses a straw - goes down easier.

 

Hang in there. I hope you find an answer soon.

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I wonder why Bactrim. Yes, the doctor could have been more complete and should have know if she was on an antibiotic.How far into the steroid burst is she? As for the not eating, hopefully the antibiotics will help with that. I love it when docs say the kid needs to eat. um....yes....I know that, but that's why I need you...I need a doc to help get my kid better so they will eat something....

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She is on day 5 of the steroid taper. I just talked to the doctor and said I thought I saw her get a bit better for a couple of hours but the next day she was super bad again. He said that he does not understand why. He asked if she was on an antibiotic and I said no. He said why and I said because "you never told me that she needed to be on one with this taper" Man, why do some of these doctors assume that you know all of this!!! He wants her on this same dose of steroids for a few more days while starting bactrim. Please give my any feed back that you have. It just helps to talk to you.

That kind of explains why she did not respond as expected! If there is no antibiotic to keep things in check while you suppress the immune system, well, let's just say good thing you got to talk to the doctor! I am amazed sometimes how quickly docs go through stuff and one is supposed to keep all this stuff straight after the visit. Our first LLMD was awesome: they got a blank piece of paper and the doc would write down things for you as she went through the visit, so we would go home with a sheet of instructions in the docs own hand explaining what to take, how often, how much, what for, etc. But very few docs do that. Some of them just assume you know this that and the other.

Anyway, I hope now with the antibiotics you will see some progress.

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