Good results from first IVIG! Should we do another?

[DeterminedMomVA]

Looking for advice as to whether we should do a second IVIG next week or not?

My 11yo PANS DS had his first HD IVIG 7 weeks ago, and his improvement is remarkable. The IVIG was really hard on him, with the migraine headache (which continued off and on for a week+), nausea, exhaustion, for about two weeks afterward -- and he did drink copious amounts of fluids both before and during the IVIG.

 

My typically functioning son had his first onset in January 2011 (not recognized as such at the time, but obvious in retrospect due in part to the handwriting decline, suicide threats, eating restrictions, and intrusive thoughts – the worst of that resolved within a month of onset), then a second, very dramatic onset in September 2011, thought to be sudden onset bipolar/OCD/anxiety/tics, until I finally figured out in Feb 2012 what was going on and he was diagnosed by Dr B and Dr L and began abx for a chronic sinus infection, which resulted in a dramatic improvement at first to 70% of normal, then a slow but up and down improvement to about 80% of normal when he was at his best. When he was about 80% (still with moderate school and social anxiety, tics, hyper, etc, but mostly functioning) we did an IVIG in early October.

Seven weeks post-IVIG, he's probably back to 95%, with virtually all anxiety, OCD, irritability just gone. No notable school anxiety in 3 weeks, and his social anxiety is also way, way down -- he's starting to reach out to people again and try to re-establish friendships. His tics are also way down, with only an eye twitch, small facial scrunching and occasional shoulder shrugging tic. He still has moments of being hyper and disorganized (ADHD symptoms), but they are not constant and seem to be when he’s excited about something and/or tired. He even got a fever for one day two weeks ago (turned out to be a cold sore/herpes) and we saw no ramping up of PANS symptoms at all. (Yay!)

 

So, we’re scheduled for another IVIG late next week. I am so thrilled with how well he’s doing. I am hesitant to do another IVIG at this time while we wait and see what further improvements the first one results in – the first one was so stressful and so hard on him physically. I think Dr. K and Dr. L both tend to just do one IVIG, and then wait a while and see what happens. We do our IVIGs with Dr. B, who typically does repeated IVIGs.

 

DS does have an immune deficiency – IGG1 consistently under 600 (normal is >820), serum IGG also below the normal level, (but it’s not really, really low), and no immunity to strep pneumonia despite being fully vax’d as a kid . He’s on treatment doses of both Augmentin (since Feb) and Zithromax (since June), 200 mg of ibuprofen/day, plus assorted probiotics.

 

Can anyone provide insights/advice about what they think we should do? Did anyone stop for a while after one HD IVIG to see how much improvement they could get from it? Did anyone keep going with a second HD IVIG just 8 weeks after a first one that seems to have been really effective?

[beeskneesmommy]

2 schools of thought on this: 1. Dr. B does every 8 weeks, usually for 2-3 tmes as the half life of IVig product (when it washes out of the body) is betw. 8-12 weeks. School of thought is to "replenish" the product in the body to continue turning the immune system around. 2. Dr. L does a slightly higher dose (2g/1.5kg) one time, then waits for at least 12 weeks, usually more. She reports that the pt. may continue to demonstrate improvement for up to 5-6 months post IVig treatment. DS6 have IVig w/Dr. L in mid-Sept. We chose to be more conservative and move more slowly. It also worked out financially and geographically to do it w/Dr. L. Our son has improved a great deal but is not at a constant 100%. We have decided to wait and watch, then plan to do another IVig some time in the late winter or early spring if he is still not 100%. Neither choice is right or wrong, although some specialists belive that it may be detrimental to do several IVigs close together in succession. I trust both docs judgement, just chose to be more conservative. This being said, our son prsented as a more mild case over the last year as the abx therapy that Dr. B has him on moved him forward well.

[DeterminedMomVA]

Hi, Thank you for the feedback -- the reasoning behind the different approaches is really helpful.

 

We actually did a very high dose with Dr. B -- slightly more than 2g/kg, which is why I think it was so hard on DS. I'm leaning toward scheduling another in 2 months, instead of next week, and then seeing where we're at then. I am a bit afraid that DS is going to get sick and go into an exacerbation before he's experienced as much healing as possible from this first IVIG -- I'm catching a cold right now and I'd absolutely hate it if he caught the cold next week and then fell apart again. But I'm also afraid that the second IVIG may be too much for him (stress-wise and physically) and also cause a decline. I'm just so relieved that the first IVIG seems to have had such a positive effect.

[mwmmom]

My DD9 had repeated IVIG (every 8 weeks and then more frequently last winter) to get her back to 100%. It was at the 2 grams/kg dose. We saw steady improvement in her condition after each IVIG. She is under the care of Dr. L. She also has low IGG. The reasoning behind the repeated IVIG was to keep her "extra healthy" (so no back-sliding) during the fall/winter. There was a time last winter and early spring where I wondered if we needed another IVIG, but I am so glad we did. She got better and better with each one all of our children deserve to be 100% back to their old selves! Good luck in your decision!

[DeterminedMomVA]

Thanks mwmmom. Interesting that Dr. L did HD IVIG's only 8 weeks apart. I'm so glad to hear your DD is back to 100%!

 

How many IVIG's did you do in total over that time period? Was your DD's pre-IVIG IGG lower than my DS's, or about the same?

[mwmmom]

Yes, my daughter had similar IGGs levels as your son. My daughter did 2 HD IVIGs 8 weeks apart and then we did then more frequently last winter (4 to 6 weeks) to avoid any setbacks and maintain improvements we saw. We also did extensive ERP therapy along with IVIGs (at Rothman center and then locally) as well. She has had 10 IVIGs in the last 18 months.

[DeterminedMomVA]

Thanks for the feedback and insights. I'm not sure I'll ever post good news again because it seems to jinx us. It was a somewhat challenging Thanksgiving break, DS seems to be flaring again, and he woke up this morning with a runny nose and post-nasal drip/cough -- I think he's catching my cold, which is possibly the primary cause of the flare. We'll be doing the IVIG's on Dr. B's recommended schedule -- we need to trust his judgement and we're hoping this IVIG will help nip this flare in the bud. DS has improved tremendously since we began treatment with Dr. B in February, and we'll stay the course and continue praying for remission.