Turning back the pages after IVIG?

[browneyesmom]

Ok, so I've had a rough day today with DD11 having a hard time. She is exactly 5 weeks and 5 days from her first HD IVIG infusion in the hospital at Christmas. Today was not pretty. She was moody & emotional all day today & much of yesterday too, btw. She kept getting "stuck" on things and had a major rage this evening where she tried to violently attack my husband while I was making dinner.

 

She was screaming at him that he is a liar, to stop pushing her (he wasn't - he was, in fact, extremely calm, loving and patient with her), pulling hair, trying to bit, hit, kick, scratch... did I miss anything? That lasted for about 10 minutes... yes, I know that is not long compared to her 2 hour rages just before Christmas, but my resources are more drained now. Following that, she hid under the kitchen table and screamed for about 5 minutes, then went back to the family room, in the corner and curled in a fetal position, screaming. Then she laid on the floor screaming and crying for another 5 minutes or so. As that settled, I picked her up and carried her (stiff and starting to thrash now, as well as screaming when I lifted her) to the kitchen and sat her on my lap and held her - her hair was all over her face & stuck from the crying. She slowly started calming. She got out of my lap and crawled onto the floor. For the next 45 mins or so, she crawled around on the floor, mostly following the dog. I finally got her to eat, but she remained in a very regressed state.

 

She cuddled with the dog, then as suddenly as it began, she suddenly snapped out of it and spoke. My husband had just completed a phone call and she said, "Who was that?", in a perfectly normal voice, perfectly normal tone, etc.

 

Last week, she refused to take a bath for 5 days straight... said she couldn't get wet. She didn't want to discuss the reason, but I know what it is. Last night & two nights ago, with much encouragement, she did bathe. Tonight after her episode ended, I told her she needed to go take a bath and get ready for bed, fully anticipating it might lead to a mess. She got up and went right upstairs, then within a couple of minutes, called down to me about where to take her bath - she is in the tub now.

 

It's like we're on a roller coaster.

 

Is this time frame about right for "turning back the pages"? If so, how long does this last? What might I expect in coming days, weeks, months? We return to Dr. B's infusion center in 3 weeks for her next one.

[Tamistwins]

So sorry to hear your struggles. It really is so difficult and I empathize with you. I hope things turn around and you only see positive improvement .

All the best,

Tami

[NancyD]

Hi Denise,

 

I'm so sorry to hear this!! You know, it reminds me of my DD after last year's IVIg. This was before Dr. L switched her to 1000 mg bid Augmentin XR and also while her D levels were catastrophically low. Since she has been on Augmentin XR and her D levels are within normal range we have not had any "turning back of the pages" or saw-tooth healing.

 

What abx and dose is your DD on? How are her D levels? And have you done the IGX Basic Lyme Panel yet?

 

Sending you a big hug!

Nancy

[browneyesmom]

It has been a week since we got home. I had trouble reaching our pediatrician for the LFT order (those and her porphyrins are elevated) and I wanted to just have to do one stick for all the labs. So, I missed it for this week and will have to go early next week.

 

Dr. B said that due to her Ig deficiencies, she is unable to produce high titers to the strep... I suspect it is also the reason she can't produce a fever.

 

He has her on Omnicef BID.

 

I'm going to have to withdraw from my class for this semester. I can't complete any of it with her here all day & sometimes doing homebound. That's hard for me as I thought I'd be a nurse practitioner by now and can't complete this silly BSN, but... sigh... it's just going to have to wait.