4 weeks post IVIG

[pixiesdaddy]

I am almost loathe to write this because I don't want to jinx anything. It feels like anytime we think we see something positive in our daughter, we soon after see a backslide.

 

However, I was talking with my wife (Pixiesmommy) and we realized that the last time she'd really posted about our DD, she was really rock bottom, having major rage attacks, heavy onset of all symptoms. And we're pretty sure she's improving now, and we know how much we wanted to hear positive stories from other people when DD was at her worst, so we'd like to do our part and post what we think is our positive story.

 

Anyway, DD had IVIG on 9/11 - so that's four weeks ago now. Here is how she seemed to us.

 

Week 1 - Notable changes included almost instant disappearance of her biggest dystonic muscle tics and her bed/day wetting. Otherwise, not much changed. Lots of random little changes and recurrences of strange behaviors, but the anger, separation anxiety, and violence were unchanged.

 

Week 2 - We started to believe we were seeing improvement, minimally. Almost all tics had gone, and we THOUGHT violence was decreasing, slightly.

 

Week 3 - Heavy return of anger and violence. Some of the worst rages we'd seen her have.

 

Week 4 (This week) - She's gotten to school 4 out of the 5 days. While she had violent outbursts almost every day, they were - by and large - VERY minor, minor meaning 5 minutes at the most. There was no need to restrain her to calm her down. She was able to be talked out of anger and violence. Separation anxiety was still there, but she's showing tentative signs of being able to step away from us (she did just a little homework on her own, ran a bath on her own, got into PJ's on her own...). She's starting to breeze through homework that used to be painstaking and filled with angry outbursts.

 

Most importantly, both my wife and I agreed that we saw the same "healthy" look in her eyes that we noticed on the steroid burst. It's not there yet, but we can see it.

 

Oddly enough, what was very comforting was to read the sequence of symptoms from EAMom's little girl and to realize that ours is following in almost identical footsteps, down the fact that she's complaining of itchiness this week, a symptom that occurred at almost the same time post-IVIG for EAMom's girl if I'm not mistaken.

 

It helped so much to hear ANY ray of hope when DD was at her worst.

 

I can't say we're out of the woods. We're still depending on a 5-day-a-week caregiver to help DD get to school and manage herself at home. But we're light years from where we were last week and so hopeful that we're trending upwards.

 

I know that - having said all that - she'll backslide again. That seems to be the nature of healing post-IVIG, but the more we see, the more we think she really does have PANDAS, that IVIG really was a reasonable treatment for her, and that we're going to see some continued improvement.

 

Keeping our fingers and toes crossed all the time,

Pixiesdaddy

[Buster]

Keeping our fingers and toes crossed all the time,

Keeping our fingers crossed too... You're about 4 weeks behind us....

 

Wishing you the best,

 

Buster

[EAMom]

Are you on a slightly higher dose of Augmentin now? How long has that been for? Maybe that is helping too?

 

Our dd was on a pretty high (treatment strength dose) of Azith (250mg/day) for over a year b-4 IVIG and still is...

 

Anyway, we hope things continue in the right direction!

[melanie]

Are you on a slightly higher dose of Augmentin now? How long has that been for? Maybe that is helping too?

 

Our dd was on a pretty high (treatment strength dose) of Azith (250mg/day) for over a year b-4 IVIG and still is...

 

Anyway, we hope things continue in the right direction!

[Megs_Mom]

I am so grateful that you shared this update - and think of you all every day. So hopeful that this will continue.

[FallingApart]

Pixiesdaddy,

 

Your update makes me so happy for you and your family. I hope so much that the improvements continue. I believe our situation is similar to yours and understand your need for the 5 day a week caregiver and can still call it a good week. Your description of improvement sounds very positive and like things are going in the right direction.

 

Are you planning to do only 1 round of IVIG for pixie or will there be more? I hope today is a great day for your family!

[sf_mom]

Fantastic News.... I am so happy you are seeing progress. We are about one week behind you with IVIG treatment and will report our update soon. One thing I wanted to mention, was my son complained of itchiness also when he got sick in June. I was actually rubbing Aveno lotion on him every night before bed to help. If it was a symptom when he got sick maybe its a sign of healing too.

[ShaesMom]

It is great to hear that she is improving! Keep us posted!

 

Sam

[pixiesmommy]

To answer the questions:

 

1. We upped DD's augmentin does from 250 mg 1x a day to 250 mg 2x a day.

2. We are not PLANNING another IVIG, but we're not ruling it out either.

 

Saturday and Sunday went reasonably well. She had one 10 minute violent outburst on Sunday, but was otherwise able to function.

 

Today was not good. Could barely get to school for an hour and a half, violent off and on all day.

 

We've started charting behaviors on a 0-2 scale (0 = good, 1 = medium, 2 = bad) so we can try to achieve some clarity on whether she's showing improvement or not. Nervous about the idea that antibodies die around Day 30 because that's where we are.

 

I guess we'll keep waiting and seeing.

 

Pixiesdaddy

[melanie]

To answer the questions:

 

1. We upped DD's augmentin does from 250 mg 1x a day to 250 mg 2x a day.

2. We are not PLANNING another IVIG, but we're not ruling it out either.

 

Saturday and Sunday went reasonably well. She had one 10 minute violent outburst on Sunday, but was otherwise able to function.

 

Today was not good. Could barely get to school for an hour and a half, violent off and on all day.

 

We've started charting behaviors on a 0-2 scale (0 = good, 1 = medium, 2 = bad) so we can try to achieve some clarity on whether she's showing improvement or not. Nervous about the idea that antibodies die around Day 30 because that's where we are.

 

I guess we'll keep waiting and seeing.

 

Pixiesdaddy

 

 

 

Hi Pixxysmom oh dad sorry

 

were right with you we havent seen any anger which ids great but his verbal tics are back not as bad but there back.Were going to the mD today to figure out what to do next. We are 5 weeks tomorrow.

 

Melanie