Question: when do we do IVIG?

[julie_2girls]

Daughter has not been on abx until one week ago. She is newly treated by llmd and was found to have lyme, babesia and erhlichia all on labcorp. she has bartonella rash, elevated titers for ebv, hhv-6, has MARCoNS, gut parasite and PANS.

 

I am not sure how much is Bart, herxing and/or autoimmune encephalitis. Question is should we try IVIG right off the bat OR do we need to get some infections down?

 

Daughter has been sick,homebound for over 2yrs diagnosed with POTS, MCAD. she is going to be 17. pretty sure our llmd plans on using IVIG all along I just wonder timing? did some of you wait and wish you hadn't, etc???

 

fighting with insurance company already they are not paying for phone consults. our dr is in northern calif. travel is almost impossible right now...

 

thanks.

 

ps biggest symptoms are rage, ocd, pretty much all the neurpsych stuff. daughter has huge pupils!!!

 

[sf_mom]

All three of our children have gestational Lyme with almost similar infections to your DD. Two of our children had PANs presentation. All have been treated for Lyme et al for the last three years. We live in Northern CA and see a LLMD here and one in CO. We are fortunate to have a few good LLMDs in the Bay Area.

 

When our older son was first diagnosed with PANDAS (prior to discovering Lyme et al) he had three hdIVIGs and he responded well to treatments. I believe it temporarily helped him to fight the infections he unknownly had at the time. His last treatment was January 2010. From what I understand from those with Lyme et al sometimes IVIG helps, sometimes it doesn't and sometimes it is temporarily too much.

 

We choose not to pursue hdIVIG with our younger twins even though they had immune deficiencies and one had OCD. They were 3 1/2 years old when diagnosed with Lyme. They are now 6 and both are recovering as hoped without IVIG but we have done a lot to boost their immune system in other ways. All three children no longer suffer from OCD or PANS presentation.

 

Your Dr. will hopefully provide good guidance on if its warranted and when it might be appropriate throughout Lyme treatment. In our experience treating both Babesia and Bartonella could temparily cause an increase in rages and OCD as a herx.

 

Lyme et al is very complicated disease and from what you have outlined above you have a very long journey ahead. In my opinion slow and steady wins the race with recovery. Wishing you the best.

 

By the way, older DS also had dilated pupils that are now resolved.

[julie_2girls]

Thank you so much for the response. yes we have a long journey... our llmd said 2 yrs. so i guess my ocd is coming out since we re only one week into first abx, lol. I believe the rages are what make it so hard right now.

 

I appreciate your guidance. It is hard because so many people tell ivig success stories and you wonder what will it do for our child. what I do know is I trust our llmd. He sees both pans and lyme all the time.

 

I cannot imagine my daughter's eye back to normal, it has been so long. thank you for telling me that part. we are doing a lot to heal her gut and work on detox. she is very ill and it has gone on so long undiagnosed.

 

Okay slow and steady...i know that but need reminders when I start to freak out:(

[Bill]

SFMom's response covered much of anything I could say so just adding "what we did." Short background story is that our son likely had lyme/bartonella/PANDAS for 9 years before being diagnosed. No idea which came first or when. We were fortunate (haha) in that SSRIs kept his raging under control during much of the time he went undiagnosed/misdiagnosed. He also developed severe OCD, dystonia affecting most of his body, and yes - his pupils were dilated for some 5 years prior to proper diagnosis! (Other symptoms but you get the idea.)

 

So - we waited 9 months after starting antibiotic treatment before his first IVIG on the theory it was better to get his bacterial load under control. At the end of this month - he is going for his 8th (or possibly 9th). We saw improvements early on. I'm not really seeing the improvements now but my wife believes she still does. In any case - he continues to slowly improve. He is 2 years and 9 months into treatment. The whole reason we agreed to IVIG was on the hope that it would shorten his recovery.

 

No clue if we made the right decision or not. He might recover just as fast without the IVIG. He might not.

 

So - we waited. We have no regrets. We are all doing the best we can so there really is no right or wrong answer.

 

Best of luck, bill

[dcmom]

julie- I do know one pandas doc that says that kids with active infections do worse with ivig- have sometimes bad reactions.

 

That being said- hindsight is the only way to know what to do with pandas. I would certainly suggest that you give the antibiotic treatment longer. Follow your gut. My feeling is that you NEED to do what works. Give the abx two months without expecting to see anything- after two months I would expect improvement, or I would question our path- this is just me. I would try several options before going to the big guns (pex or ivig)- but that being said, I would move to the big guns if I did not see continued improvement (we did and it was great for us- no lyme).

 

Let your ocd benefit you here- approach treatment methodically, change one thing at a time, and give it at least 30 days to see improvement. If you see major worsening, pull back or discontinue.

 

Good luck- she will get better

[mdmom]

Bill's son and my DS15 have almost identical histories. My DS15 went undiagnosed for 9 years as well and by the time he was properly diagnosed with PANDAS (or PANS), 4 doctors considered him a tough, chronic case and told us he would definitely need IVIG.

 

Rather than jump to IVIG since we would have had to pay 100% for it, we found an LLMD who uncovered infections the other docs were not willing to look for: Lyme, Babesia, Bartonella, EBV, Strep, Mycoplasma, yeast. We started with 8 months of oral antibiotics, antifungals, antivirals with some success. Eventually moved to IV abx, antifungals and have continued IV for 18 months now.

 

Just 6 months ago (and 18 months into treatment) we were able to get insurance to pay for IVIG. DS15 gets IVIG every 4 weeks. Seems like a lot, but it's also addressing an immune deficiency.

 

Since starting IVIG, the gains have been small and his progress is bumpy with a 2-steps-forward-1-step-back pattern.

 

IVIG is not a magic bullet. I do think it is an important part of my son's healing, but it's not the only thing that is helping.

 

My son has been homebound for 2.5 years, but I believe it has been important to give his immune system a break by not exposing him to constant infections at school.

 

We see an integrative doc who also addresses methylation (MTHFR mutations), detox (lots of supplements), immune modulation (low-dose naltrexone), sinus issues (rotates antibiotic/antifungal nasal sprays), and gut health (gluten/dairy free, organic diet, high doses of probiotics). We also have done ERP therapy (intensive 3 week program at Rothman) and will return to Rothman for 2 more weeks this summer.

 

And when times get tough, we resort to ibuprofen.

 

I think many on here would agree that you have to hit PANS and infections from many angles. But it requires a lot of patience, time and money. It sounds like you are on a good path with your LLMD. Stay the course and give the treatment some time.

[Mayzoo]

Our kiddo seems to have a lot of viral load, and a compromised immune system. We are waiting to see what she is like after we get some of the viral titers (antibodies) under control. If she is still struggling then, we will need to decide if we believe the risks of IVIG are worth to potential benefits.

 

Each of us must decide these things on our own, and we will never know if we made the right choices. What works for one kid may not work for another. I cannot discover what the outcome would be of BOTH early IVIG and delayed IVIG. We just have to do our best at each decision milestone and accept the outcome we end up with.

Edited July 10, 2013 by Mayzoo