IVIG help please!

[kimballot]

Brown Eyes Mom -

I just wanted to tell you how very impressed I am with your ability to keep it together while all of this is happening. Your daughter was in extreme exacerbation with multiple trips to the ER... you got her high dose IVIG as an inpatient in a facility that probably never heard of PANDAS, and you got her a second round of IVIG a few weeks later.. AND you've seen some improvements since the first IVIG. I don't know if high dose or low dose is better at this point, but I do think it absolutely STINKS that you brought her in for IVIG without knowing all the facts. Clearly you are not a passive Mom who lets people do whatever they want to your child. I am sure that if you expected a second day of IVIG it was with good reason. I am wondering if there may have been something else at play in the hospital to make the doctor switch to low dose.

 

I think Peg's articles are a good shot at trying to get another dose of IVIG in her if you are seeing that she is backsliding. I also think your journaling is important as the evidence is the changes you are seeing with your daughter.

 

Best wishes!

[browneyesmom]

Thanks Kim. I don't feel I have much choice, really as it's often clear that her recovery is on my shoulders to a large extent.

 

It was actually at the Children's hospital in our area, so part of my frustration is that they are not very familiar with PANDAS - some had never heard of it - ER doc pulled me aside to ask if we'd ever considered that it might be a psychiatric problem - duh! Of course we did! ... and grrr... explain to me then, why her symptoms wax and wane so dramatically when she has strep and gets rid of it... he had no real answer for that. The nurses and other staff were interested in learning about it.

 

Yes, there is actually a lot more background info about how all that went down with the IVIG infusions - started when I asked to see our Immunologist early this past fall, thinking they might find an issue there and they did. When we were there for infusion on Thursday, I was told by the nurse on the unit that the second half of her infusion would be Friday and that is why we returned - access in arm! They confirmed the order AFTER we left on Thursday - that should have happened BEFORE we left and if they could not get confirmation until after we left, they should have called me to speak with me directly to cancel - I had no reason to think we were not to be there next morning and had to wake her (took over an hour) when she desperately needed the sleep - not happy!! I was prepared to initiate a full investigation to determine just exactly how much IVIG she received, but once I got copies of her records, it was clear they did indeed follow the orders - of the 2 different docs & appropriate protocol. Problem is, the Ped Neurologist referred us back to Immunologist after the in-patient infusion - it's so convoluted!

 

hahaha... no, I wouldn't be referred to as a passive momma! lol Thanks for the chuckle - needed that today!

 

I'm working on creating a log sheet for her, but my time is so limited - I need a quickie one where I can fill it in fast before she needs my attention again.

 

Oh... and about that hospital... after I spoke with the Director of Nursing and met with 3 nurse managers, they WILL be educating all medical personnel about PANDAS soon - she totally agreed with me that it needed to be done and said she'd email that out that day. I have every confidence that she did exactly that.

[NancyD]

Denise,

 

We'll be there on the 26th and 27th getting an infusion. Please come say "hi". Dr. B uses Gammaguard and that's what we have always used.

 

Nancy

 

Thanks Melanie... we see Dr. B on Jan 26.

[browneyesmom]

Oh wow, Nancy - wish I'd known! We just booked our return trip to come home that afternoon. Our appt is first thing in the am - 9:00 - what time will you be there for IVIG that day?

[NancyD]

Denise, we'll be there at 8:30 am. Dr. B will show you the infusion area. Just look for the obnoxious 14 year old! :-o

 

Last time she was really POd because her infusion took 6-7 hours. They do it at a much slower rate than DD was used to at Children's Hospital Boston. So she was particularly nasty to me and the poor infusion nurses. I was herxing badly that day from my Lyme treatment so I had to lay down on the sofa outside her room during most of the time. This time we're upping the dose to 2g/kg but we're doing it over 2 days. I'm keeping my fingers crossed she will be "nice"!

 

Nancy

 

Oh wow, Nancy - wish I'd known! We just booked our return trip to come home that afternoon. Our appt is first thing in the am - 9:00 - what time will you be there for IVIG that day?

[browneyesmom]

Great Nancy, we'll see you there! My husband and I will be there with her, as well as my ex - her dad.

 

Aww, bless your hearts... all of you! No worries... I doubt anything she might do would shock me - we've seen so much with DD11's exacerbations that at this point, nothing does anymore. I hope the increased dosage helps her.