Explaining IVIG to family

[EAMom]

We're doing 250mg/day Azith (since June 08). Our dd weighs about 54 pounds (she started at this dose at 43 pounds). When we've tried to drop her to 125mg /day (this was pre-IVIG) we noticed at difference so we stayed up at 250mg. I think 250mg/day is more of a treatment strength dose of Azith, but I think this is what she (and many other PANDAS kids) needs. I know Colleenrn's kids and Diana's son are on similar doses.

 

I know my dh (Buster) had a slightly different answer about our plans for the future. Perhaps in June (10mo. post IVIG, but also when she is out of school and exposed to less) I would consider going down to 125mg/day and see what happens with that.

 

Re your dd's dose (36 pounds) IMO 400mg/week is too low. How is she doing overall? I would do 200mg/day for 1-2 mo. and then evaluate how she is doing...consider going down too 100mg/day if she is doing well and see how she reacts to that.

[Buster]

Hi dcmom,

 

We're continuing at 250 mg/day for 60lbs dd and will likely remain at this dose through the strep season. Our reasons are:

• we're trying to minimize the number of variables we've introduced
  
• we saw breakthrough events at 125mg/day pre-IVIG
  

We think that we were actually seeing more the anti-inflammatory and immunomodulating effect of azithromycin pre-IVIG -- so perhaps we were doing more than just preventing infection. Now post-IVIG, her CaM Kinase II activation is substantially reduced (119% versus 253%). We'll look at this again in 6 months and decide whether to lower azith or switch antibiotics.

 

My gut is that you probably want to stay at the 200mg/day. How are her symptoms?

 

Regards,

 

Buster

 

 

So what type of dosing do you consider prophylactic? My dd is supposed to be on zith 2x week, 200mg each dose. I don't know if that is enough, and I have lots of rx so I am doing 200mg day for now. (she is 36lbs).

 

I like the zithromax if we can get down to a few times per week, because I think it is easier on the tummy. I had this conversation with Dr T and infectious disease dr at Gtown, and they think it may be better for the gut to get zith 2x week, rather than something every day like amox.

[dcmom]

She did really well on 400mg/ week for a month (after being on 200mg/day for over a month- that was her treatment dose). Then she has a T&A and had a relapse, We kicked the relapse with steroids and upping the zith. When she came off of the steroids, she was exposed to strep and had another mini relapse. Last week she had a 24 hr stomach bug, and I definately saw an uptick in symptoms. We are doing pex in a couple days- and of course post-pex I don't want to mess anything up, so I imagine I will keep her on the daily zith as long as I can (meaning at least through the winter)- but I am anxious about so many abx.

 

With your dd on daily zith- do you see her react at all if exposed to strep or when she has a cold, virus?

 

thanks!

[dcmom]

EAmom- sorry if I have asked you this before- what do you do for probiotics?

[peglem]

peglem...how much does your dd weigh? Our dd (now 54 pounds) has been on 250mg Azith/day since June 08.

 

Now she weighs @ 95lbs. When she started the prophylactic zith-(250mg/day 5days on-7days off) she only weighed about 70lbs. So maybe that's why effectiveness waned...Finally, today, she has started recovering from this latest illness, to where I think she will be able to go to school tomorrow. So, when she finishes the augmentem, we'll go back to 500mg zith on MWF. I think if I need to, I can get that increased- maybe every other day (Sundays worry me), or stay on the high dose of augmentem awhile longer. We should be seeing the rheumatologist and/or immunologist soon to try to get treatment (IVIG or PEX).

[EAMom]

EAmom- sorry if I have asked you this before- what do you do for probiotics?

 

Right now, our dd like drinking Good Belly juice (whole food has them in quart size). It's also easy to time that many hours apart from her Azith.

http://www.goodbelly.com/

 

I've tried to get her to drink Kefir in the past...no success.

 

We were on a trader joe's probiotic for a year or so b-4 that....but it did have strep thermo? in it so I stopped (just to be cautious, don't know if it is really an issue).

[bronxmom2]

Hi Bronxmom2, yes our dd9 is doing great now 10 weeks post-IVIG. We had a hard first 2 weeks and then everything settled out in week 4 and it's been great since then -- I can't tell you what a relief this has been and both EAMom and I needed some quiet time to recover.

 

Did you consciously choose IVIG over PEX?

 

Yes we did. This was by no means an easy choice. PEX had the advantage of what appeared to be immediate results whereas IVIG was looking like 4-6 weeks before we'd see results. Swedo tended to use PEX for tic-primary disorders and IVIG for OCD-primary disorders. Our daughter's symptoms were primarily OCD and the secondary movement disorders seemed more OCD/chorea than a tic. Our biggest concern with IVIG was that we might be introducing some illness that is not yet tested and this haunted me personally and made me want to exhaust the other options before proceeding. The first 2 weeks post IVIG were torturous for I worried we had not only opened the possibility for a blood born illness, but also all her symptoms were coming back. Thank goodness for rock solid EAMom -- it was critically important that we were aligned on what to do so as to be supportive post IVIG.

 

In your opinion, if you have a child with no primary immune deficiency, who has probably has probably been afflicted with these antibodies/inflammation for 4 years; whose symptoms are behavioral-- extreme obsessiveness and impulsivity, hyperactivity, ADHD, and anxiety-- and seem to be deepening month by month... which would be a better choice? Is PEX more... direct somehow, because it actually removes the antibodies? Is there some reason to believe that PEX could be more permanent?

In my opinion, there is no reason to believe that PEX will be more permanent. Perhaps the critical item to consider is that the half-life (also known as the turnover rate) of antibodies is around 4-6 weeks (yes, it varies by antibody, but this is likely close). So, with PEX you'd have to be darn sure that you got rid of the original strep infection otherwise the antibodies will just come back. With IVIG, you actually are likely to get some "correct" antibodies to strep (meaning 1 in the 10000 donors probably have such antibodies) and thus these antibodies actually can take out remaining strep. Second with IVIG, there is some research (Kessel's paper for example) that the inrush of foreign antibodies reset T-reg cells. While this is incredibly preliminary, it gives some rationale as to why IVIG might have longer term sustainable effect over PEX.

 

Now on the downside, we're counting in IVIG on the incoming antibodies (T-regs) recognizing the "faulty antibody" and taking it out. We just don't know how likely this is relative to the very concrete evidence from PEX at removing antibodies. So what you have is that IVIG has a probability of removing faulty antibodies and a possibility of resetting T-regs. PEX has a definite ability to remove the faulty antibodies and is unlikely to reset T-regs.

 

So with all of that and that my dd9's symptoms were more OCD -- we went with IVIG. I totally appreciate why mom_md went with PEX given the severity of their symptoms and the higher tic component. Both approaches seemed effective. No matter what it is incredibly stressful to decide on either course.

 

How do you know if the T Cells (#2) are involved?

 

Actually, it isn't the T-cells, but rather the T-regulatory cells. It may also be related to B-regulatory cells. We're pretty certain T-reg cells are involved because the antibody is targeting GlcNAc carbohydrate which is a host carbohydrate. T-regs would normally suppress this antibody, but for some reason aren't. There is research that high levels of dopamine seem to suppress T-regs -- so perhaps that is the connection. We don't know.

 

Regards,

 

Buster

 

 

Wow, so much to digest.

So if we do wind up going with PEX... it's crucial that he's strep-free at the time? As in, give him full strength abx between now and then?

Also, if my son didn't have high levels of dopamine (only his anti-lyso-whatever was high), is it possible that the T-regs aren't involved in his case?

My son also has no tics at all- only OCD and chorea.

Such an agonizing decision.

[Buster]

Hi Bronxmom2,

 

Do you know which type of PEX you are getting (i.e., one with replacement with Albumin or one with replacement with donor plasma)?

 

I ask, because the one with donor plasma is likely to have antibodies that can take out the strep. If you just have the Albumin then the remaining B-cells will likely find any strep and reproduce the faulty antibody. So, yes, it would sure be nice to be strep free before you go in for PEX particualrly if you are just getting Albumin. PEX with Albumin is usually called PlasmaPheresis.

 

Please remember that antibiotics don't in and of themselves kill strep. They slow it down so your immune system can get the strep. If for some reason your child's immune system can't find the strep, then IVIG is likely the way to go.

 

With that said, I'd still encourage you to check with your doctor on their recommendation. I studied PEX and IVIG and decided that PEX with donor plasma was slightly more invasive than IVIG with a risk of blood product transmission. We don't know a lot about the sterilization of donor plasma, but with IVIG, it seems pretty well scrubbed. In addition, we are hoping that the IVIG does some reset on the T-regs -- this is just hope as there really isn't any study there. PEX without donor plasma (i.e. use of Albumin) probably has good short term benefit. IVIG will probably help take out strep (if there) and might reset the T-reg cells. I just don't know enough about PEX with donor plasma to make a comment.

 

As you say, an agonizing decision, and I don't know how to help here except to say what we did for OCD-primary.

 

Regards,

 

Buster

 

 

So if we do wind up going with PEX... it's crucial that he's strep-free at the time? As in, give him full strength abx between now and then?

Also, if my son didn't have high levels of dopamine (only his anti-lyso-whatever was high), is it possible that the T-regs aren't involved in his case?

My son also has no tics at all- only OCD and chorea.

Such an agonizing decision.

[EAMom]

With your dd on daily zith- do you see her react at all if exposed to strep or when she has a cold, virus?

 

Yes, that is one big reason we did IVIG. We saw exacerbations after fifths' dz, the flu, and when family members were strep positive (assymptomatic sister, and me 1x with symptoms)....plus we were seeing a baseline change.

 

Dd hasn't be exposed to strep (that we know of) or had a virus since IVIG (early Aug). 9/34 kids in her class had the flu (H1N1) in late Aug...but PANDAS dd was okay (both kids already had H1N1 in June). She has also been okay when I and younger sister got a 1 day fever...but Pandas DD didn't get that one either.

[EAMom]

peglem...how much does your dd weigh? Our dd (now 54 pounds) has been on 250mg Azith/day since June 08.

 

Now she weighs @ 95lbs. When she started the prophylactic zith-(250mg/day 5days on-7days off) she only weighed about 70lbs. So maybe that's why effectiveness waned...Finally, today, she has started recovering from this latest illness, to where I think she will be able to go to school tomorrow. So, when she finishes the augmentem, we'll go back to 500mg zith on MWF. I think if I need to, I can get that increased- maybe every other day (Sundays worry me), or stay on the high dose of augmentem awhile longer. We should be seeing the rheumatologist and/or immunologist soon to try to get treatment (IVIG or PEX).

 

So your 95 pounder going to be getting 1500/week.

My 54 pounder is getting 1750/week.

Something to think about....I think the dose makes a big difference.