It’s been over four months since I had IVIG—and six months since the abrupt onset of my tics and other movement problems. On the whole, I’d say I’m much better. I’ve even started tapering off the steroids. The way I put it with my family is that I finally feel like a person again. I’m almost back to where I was before I started flaring two years ago—with the addition of tics, some walking issues, and hypersomnia. It’s not all forward progress, though. It’s really more of a two-steps-forward-one-step back process.
The movement problems have gotten slightly worse again, although they’re still nothing like the crazy chorea dance I was constantly doing this summer. The hypersomnia is by far the worst symptom now. I’m completely dysfunctional if I don’t take the wakefulness med Nuvigil. I fall asleep after sitting down anywhere for more than ten minutes. When I do happen to be “awake,” I’m loopy and can’t concentrate. At least I have Nuvigil… My doctor just started me on another anti-inflammatory called Plaquenil, so I’m hoping maybe it will help some of this.
When you’re sleep is messed up, everything is messed up. I still have trouble with concentration and processing written information. The less steroids I take, the more I often I have trouble coming up with words for everyday objects, which only makes my social anxiety worse. But I’m not depressed anymore. I still have quite a bit of general and social anxiety, but I was able to have a small party at my apartment at the end of the semester—even though the idea of having five friends over at once had me shaking all over earlier that day. A couple months ago, I know I wouldn’t have even considered inviting friends over.
Perhaps the most mind-blowing improvement is with my OCD. I’m slowly not carrying out compulsions anymore without having to go through months of CBT/ERP like I did in the past. There are times when I find myself touching something I wouldn’t have dared handle a couple months ago, and I only realize what I’ve done afterwards. I’m not sweating through anxiety when I don’t do my compulsions—I’m just not doing them without thinking about it. It’s amazing. As someone who has been through CBT before (and had success at the time), it’s very strange to see your brain rewiring itself without you having to consciously work so hard at it.
At my latest follow-up, my doctor told me I looked “less tormented.” And that’s how it feels. However, she was quite concerned about the sleep issues—especially that they had come back after being completely gone and that they didn’t go away on a Prednisone burst this time.
“At this point, we can talk about doing another IVIG,” She said. “But we need to wait at least six months to be sure you need it.”
I wasn’t surprised. But now I just have to keep waiting… again.
Nevertheless, on the whole, I’m doing so much better, and I’m very happy with the progress I’ve made. But do you want to know a secret? Getting better is frightening because the better I get, the more I realize how far gone I was this summer. In June, I was hardly upset that I had stopped eating and couldn’t walk and suddenly had uncontrollable movements everywhere. I was apparently in a bit of a daze, and I had no idea how much I’d really lost my personality. Now that I’m back, I get it, and I’m even more grateful for my continuing recovery.
I’ve had this blog for over six months, and the responses and support I’ve received so far have been incredible. Thank you. I would love to get some feedback from all you amazing readers about what you want to read about next. I’m planning to continue posting regularly at least until I get 100% better and then for a few months afterwards. That’s probably another year or two of writing. (And then I want to turn it all into a book, but that’s another story…)
What topics would you most like to read about? Do you have any questions for me, as an eight-year survivor of OCD and PANS? Please comment with your ideas and thoughts!
6 thoughts on “IVIG: Four-Month Update!”
My son 10, had IVIG two months ago and he was much worse after IVIG. Dr said he will see positive results after 3 months. one more month to go. Not sure. No hope. It is very worse now after IVIG. He said ” mom I cannot take it anymore, need to die”
Matthew, I’m so sorry that your son is having such a terrible time. Have you told the doctor about what he said? That is so heartbreaking. Have they ever considered doing a Prednisone burst or taper to relieve symptoms while waiting for the IVIG to work? For me, the steroids were the only reason I was able to function at all for the first two months after my first IVIG.
Everyone’s healing process is different, but I’ve definitely heard that some people take longer than others to see results, and many get worse before they get better. At a certain point, though, enough is enough. I hope your doctor can help find your son some relief while waiting for the positive effects of IVIG to kick in. Let me know if there is anything I can do for you.
I am so very thrilled to have found your blog this morning. It happened as I cross-referenced a med I realized might have potential for “sleep reversal” relating to encephalitis/PANDAS…and up popped your blog. In all my research, I’ve found only ONE SMALL NOTE written by a person with PANDAS–all else from parents (or less often, doctors). Bravo for you putting your experience into writing!!! And for SHARING IT! My daughter’s experience–and timing–sounds much like yours…though IVIG is hopefully going to start soon (vs your having already started it). Your doc sounds so helpful–I’d love to learn this person’s name. Perhaps I’ll find it by reading more of your blog! (If you have ways to privately answer notes like mine, please consider doing so!) Your writing is EXCELLENT and very realistic (in an area that’s so often nearly beyond description!). I pray that this combo of talent and experience will become what is ultimately a GIFT to you and your life…one that also so greatly is a gift–even a life-saving one–for others! I am touched by your work and am eager to read more! Thank you for writing!
Thanks so much for reading my blog and for leaving such a thoughtful comment! I started this blog precisely because of the lack of first-hand writings by people with PANDAS/PANS. I figured if I was going to go through something so difficult, I could at least share my experiences to hopefully help others in similar situations. I’m not glad your daughter is also going through this, but I’m glad you’ve found my writing helpful!
I can email you with my doctor’s name and some more information… Thanks again for reading!
I would like to continue to read about your journey through PANS……and I think a book on this subject is needed…….you will get there! (I’m referring to recovery and your book :)).
Thank you! I’m definitely going to keep writing about this crazy journey until I do finally get there…