Emily saw her neuro today
AnonymousOctober 14, 2008 at 11:14 pm
She checked out fine. Strength & balance are good. Eyes are good. She can hop on each foot 10 times – this is a big deal because she had problems hopping on her left foot in the past. She’s 56 lbs & 49 1/2 inches tall. She sure is growing up!
We have decided to stretch her treatments again. She gets IVIG next Wednesday & then after that she will be on an every 4 week then 3 week alternating schedule. I’m not sure if I’m fully prepared for this.
The dr, once again, is concerned with infection with the port. I swear, the man is obsessed with it. It’s driving me crazy! He wants to stop IVIG in a few months because he’s worried about infection in the port.
It’s the dumbest logic ever!
Don’t get me started…it’s not going to happen! It’s ridiculous!
We all know I won’t let it happen & I’m pretty ticked off at his position. It’s one of the things that drives me crazy about him. He never wanted her to get the port to begin with. I had to explain our process of sterile technique today & he couldn’t believe we didn’t use betadine to clean her skin before access. I explained to him that we’ve been using 3 alcohol swabsticks & 1 chloraprep (which he didn’t even know what it was) for 2 years now & (KNOCK ON WOOD) we’ve been fine. We’re very careful & ALWAYS use proper technique. I was sitting there thinking “Doesn’t he know how crazy I am yet?” Because seriously, I am CRAZY when it comes to Emily’s infusion. I practically Lysol the nurse down when she comes through the front door.
He is extremely optimistic that the CIDP is gone forever. I am hopeful but realistic. I’ve read the studies & know that while it is likely, at 20 months with no relapses, we are not in the clear yet. We need more time.
We go back to see the dr in December & I plan on taking copies of studies showing that we need a MINIMUM of 2 years with no relpase before we even consider taking her off of IVIG. I also plan on discussing the fact that we just passed the 21 day mark of IVIG a few months ago. Emily hasn’t even made it to IVIG full life yet. It’s irresponsible to take her off IVIG until she’s gone past the 42 days and even then I think I’ll push for IVIG for awhile.
I know that the dr won’t push me to do anything that I am not ready to do. I told him today that if I notice even one little falter in her during the 4 week stretch that I will be calling him & I expect an immediate loading dose of IVIG. He said he had no problem with that but didn’t think it would happen. I hope he’s right.
I’m also considering asking for a spinal MRI with contrast of her spine to see if there is still any remaining inflammation. In November 2006 that was the only inflammation left. I think if it’s gone I may be more willing to consider stopping IVIG before we reach the 3 year with no relapse mark – which is what my original plan was.
I think it would be easier on her mentally to have an MRI than to go through the pain of an EMG again. The MDA dr we saw for 4 months did EMG’s on her every 2 months & it didn’t really go over well. I’d hate to put her through that kind of stress again.
So that’s what is going on here.
October 15, 2008 at 10:17 am
Yeah Emily! Maybe Kevie and Emily can have a party together! They might be on the same schedule for being done?!
AnonymousOctober 15, 2008 at 3:52 pm
Your report sounds sooooo good! I hope she gets to stop the IVIG for good. I wonder why he is so obsessed with the port. If she has had it for 2 years and done well, what would be different now? If she stretches out her infusion longer than 4 weeks it will have to be flushed in between. My neuro wanted to go 6 weeks but when I asked about the flushes he changed it to 4 weeks but decreased the dose instead. What is she going to be for Halloween?
AnonymousOctober 15, 2008 at 4:23 pm
Jan – I don’t know why he’s so obsessed with the port. He didn’t want her to get it in the 1st place. He’s always been so worried about infection. I keep telling him that we are as careful as we can be but it’s all he can think of. He’s a nut case though.
Emily is going to be a fairy for Halloween. My mom is making her costume. I’ll post a pic when it’s done.
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