Need Encouragment after IVIG

[mdmom]

DS15 had first HD-IVIG 3 weeks ago. He is slowly going downhill and I realize that there could be a turning-back-the-pages thing happening, but it's really hard to watch this. He was not in an exacerbation when he had the infusion. In fact, he has not had a significant exacerbation for a very long time, since we have worked at knocking down infections for over 2 years. He is very sad and annoyed that his brain isn't firing correctly - he cannot comprehend math concepts, his writing is deteriorating, he seems depressed and he is very irritable. I knew going into this (as did he) that things might get worse before they get better because the old ways, emotions, behaviors that are stuck in his brain have to work their way out. But it still really hard to watch and he tells me "No one really understands how this feels." I happen to be reading "Brain On Fire," at the moment and wish I could invite the author to my home to give him encouragement. She sure knows how it feels.

 

Any encouragement and/or stories similar to this would be appreciated.

[philamom]

Hang in there mdmom! My daughter had a terrible increase of symptoms with her first few IVIG's. Maybe try some advil/motrin. Sending prayers!!

also- are you sure he wasn't exposed to anything since the infusion?

[mdmom]

Thanks, philamom. Your kind words really help.

 

I am not 100% sure he wasn't exposed. His chances of exposure are limited, though. He does not go to school and we aren't even taking him to church once a week like usual b/c of the risk of exposure.

 

It probably doesn't help that we started a parasite protocol last week.

[SurfMom]

DD15 is 5 days post IVIG. We too are seeing some decline and a swallowing OCD issue that is completely new. I just finished reading a med journal that specifically addressed the expectation that some symptoms may reemerge before they wane in reverse order of onset. The symptoms you are otherwise describing are certainly hers including irritability.

 

I will keep you posted and the best of wishes. As much as I went into this treatment educated, measured and determined not to be too anxious about the recovery, I feel like I am watching grass grow.

[mdmom]

SurfMom,

My thought exactly - I knew what I was getting into, and we certainly have been methodical and patient with each step of treatment, but I guess I still have that hope in the back of my head that my son will just wake up one morning and not have to worry or wonder about how is brain is functioning.

 

Thank you - so glad I'm not in this foxhole alone.

[sf_mom]

I understand you dealing with multiple chronic infections specifically TBI. Based on our experience couple of things could be happening.

 

1. IVIG could be creating an extended herx (in this situation more detox is helpful). With time he should pop out of it and be fine. If your son has a pic-line and this is a detox issues IV Glutatione could really help him feel better. I'd be talking with your LLMD about the possibility of regular treatments until he is trending better. Add anything that also helps with inflammation. We use Enhansa and Maxi Flavone.

 

2. It's possible he is not ahead of current chronic infections and the IVIG stirred things up. It is our experience when there is a continued regression (12 weeks or more) often a co-infection is not well covered in protocol. I would say if you are still not seeing improvement by week 12 to 16 even with upping detox and adding anti-inflammatories, I'd be talking with your LLMD about what you are missing in protocol and maybe an antibiotic rotation is required. What antibiotics is he on currently and is he covered for Babesia?

 

3. In addition, if you have not check for KPU or vitamin/mineral deficiencies yet..... I would recommend putting that at the top of list. He truly needs proper supplementation to fight current issues.

 

Hope I've provided you with a few ideas to pursue with your Dr.

[Hayley]

After my daughter's IVIG, we had some similar stuff within the first several weeks. I remember calling our doctors and saying that she was "just so sad." She would be great, but then experience an emotional dip and cry for extended periods of time and say that nobody understood, things were so hard. She was especially vocal about school being very very difficult. She had not been as articulate about the pain and frustration of it all earlier so we weren't sure if this was new or if it was that she was making some progress (we were seeing more glimpses of the "old her" which made the dips even more dramatic) and, with that, coming to terms with just how off she had been. I can't speak to coinfections, but it sounds like there's a lot of good advice that's worth pursuing in case there is something complicating his recovery. I will say, though, that my dd turned a corner around week four and, with some bumps in the road, she has made tremendous progress. We are now 8 weks out and haven't had the sadness in several weeks. She has also reported less "brain fog" in the past two weeks. I read Brain on Fire as well and was struck by the author's comment that even when she seemed ok to others, she didn't feel 100% herself (not as sharp or witty) for many months. I think it really is a process! Sorry your family is going through this bumpy point. I hope progress is right around the corner for you!!

[T_Anna]

I am so sorry that you and DS need to go through this. What is TBI?

 

Keeping you in my thoughts.

T.Anna

[MomWithOCDSon]

Sorry for the tough spot, MDmom. It sure stinks.

 

Would your DS, maybe, read "Brain on Fire" himself? If not the whole book, maybe a couple of the passages where she describes, almost verbatim, that "turning back of the pages" stage she went through herself? I remember finding that, among a few specific points, really affirming, given how much resonance it has among the PANDAs community, as well.

 

Probably the key thing is to try and help him keep from getting too demoralized by the current state of things . . . to continually reiterate that "this too shall pass," and that it's just part of the healing process, annoying and frustrating as it is.

 

Tell him he's the recipient of many, many cyberhugs! Being 15, he probably prefers those over real ones, anyway . . . at least from "strangers"!

[JuliaFaith]

My ds15 is going thru some similar stuff and he would be willing to talk/text him if he would like that. PM me.

[mdmom]

Thanks, everyone. I really appreciate all of the input and ideas. I really would be lost without this forum.

[shannon aka mommy]

Sending hugs your way.

 

I have a 15 year old son too and he is in really bad shape right now. I know exactly what you mean about "hard to watch". We are seriously thinking about trying IVIG in the near future. Please let us know how things progress.

 

Shannon