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HD-IVIG vs LD-IVIG

 

OK, my 10 yr old son who has ASD/PANDAS/immunodeficiency had his first HD IVIG (1.5g/kg) on Oct 9. 7 wks ago.

We are due for another this Friday-Dr B does HD every 8 weeks

 

Previously we had been treating PANDAS/Immunodeficiency with LD-IVIG (1g/KGkg) monthly

for a little over a year very successfully. Life was the best it had been ever. We had a re exposure in June 2010

and symptoms were off the charts again until Oct. (4 months very bad after a year and a half of bliss)

The HD IVIG beautifully got rid of the tics within days

but we have seen multiple negative behaviors as well.

Rages, OCD, staring spells, eyes shifting back and forth quickly, oppositional defiance etc. Things were already hard and they got harder (with the exception of the tics)

 

So here is my dilemna:

 

I think the high dose is too tough on his sensitive system even though it worked on the tics.

It made it almost impossible to function at school with kids etc.

The low dose was too weak to treat this last bout of PANDAS.

He has a lot of trouble with his gut and tolerating antibiotics.

We have not done Igenex for Lyme because my son was doing monthly IVIG which would skew the results.

My son is now asking to go for IVIG because it made him feel better at the low dose in the past.

 

SO here is what I need to decide:

 

Do we wait another month and do Igenex test for Lyme? (the tics are starting to come back now at week 7)

Do I follow the lead of several auto immune kids parents here and ask Dr to slowly ramp him up from low dose to high dose treatments monthly? (which Dr does this protocol?) 1.1, 1.2, 1.3, 1.4, 1.5

or Do we suffer through 3 HD treatments every 8 weeks that shock the immune system over 6 months but hopefully reverse the autoimmune process

with the risk of lots of regression?

 

Definitely need some help here.

Appointment w/Dr B on Friday to discuss, but I would love your input.

Thanks

 

Carolyn

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Oh boy! The endless debate on this issue is so hard for us parents! My son had HD IVIG in Dec 2009 with Dr.K. This doctor believes that one HD usually does the trick. My son slowly got better after this treatment. We thought we may have finally kicked this thing! The problem was when he would get a bug the symptoms would come back to one degree or another showing that his immune system was still not working properly. He started slipping again this fall after a minor bug. Now we have changed doctors and the new guy did HD about 4 1/2 weeks ago and then 1.0 g/kg 1/2 week ago and wants to continue to do the 1.0 every four weeks for a long time. My son got worse after the HD 4 1/2 weeks ago. We did not see a regression like this with the last HD. It is sooo frustrating trying to figure out what is right. I have hope reading that your son did better on the monthly 1.0 g/kg. I was told that this is not considered LD just lower than the other. There are many children that get much lower doses on a regular basis. How long did you do the lower dose and how long was he off the IVIG schedule before you saw a problem. I really wish there was a standard protocol for these kids. Sometimes I feel like everyone (including the doctors) are guessing. I have no words of wisdom for you as I am struggling with this myself. I can only share my story and let you know that you are not alone in trying to figure out what is indeed the right thing to do!

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Do we wait another month and do Igenex test for Lyme? (the tics are starting to come back now at week 7)

 

 

We did Igenex testing 9 weeks post-HD ivig. Our overall report was negative but there were enough positive bands and lyme-specific indeterminates for our LLMD to feel a lyme/bartonella protocol was worth trying. The results have been far better with this approach. We are seeing very positive things. So before doing additional IVIG at any dose, my personal opinion is that it's worth doing Igenex to make sure a chronic infection isn't getting in the way of sustained progress. I don't know why you'd need to wait another month. But certainly do what feels comfortable. One thing to consider - high C3D immune complexes can cause a false negative lyme result. So have the C3d levels checked at the same time you do the igenex draw so you have an idea of whether a false negative is possible. In our case, very high complex levels + indeterminates = lyme for our LLMD. I was skeptical at first, but am amazed at the changes.

 

Best of luck with your very difficult decision.

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Thanks for the responses.

LLM I am curious how you are treating the Lyme.

Specific ABX that are better for Lyme than strep?

 

Dr B said the half life of IVIG is 6 weeks.

You have to wait a full 3 months after IVIG to get accurate Lyme testing.

With how expensive the Igenex testing is I would want it to be as accurate as possible.

 

I hope to hear back from a few of the parents whose kids are immunodeficient.

like the idea of slowly increasing the IVIG dose monthly so the child doesnt have

the extreme reaction.

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LLM I am curious how you are treating the Lyme.

Specific ABX that are better for Lyme than strep?

 

Dr B said the half life of IVIG is 6 weeks.

You have to wait a full 3 months after IVIG to get accurate Lyme testing.

With how expensive the Igenex testing is I would want it to be as accurate as possible.

 

I don't think there's one specific combo of abx for lyme. I think the LLMDs use certain combos based on symptoms and their suspicions of co-infections. And then after a time, I think any combo is switched around because lyme can become resistant or go into cyst-mode, etc. and different abx work best for different states (active, cyst etc). But I'm not a lyme expert. Before seeing the LLMD, our doc tried one month of azith + augmentin and we saw no change. When we started with the LLMD, he suspected Bartonella as a co-infection and wanted to add doxycycline but due to my son's young age and tooth development, that wasn't an option. So he added Bactrim and we've seen some really good -and lasting- improvements. I suspect at some point, our current abx combo will change. We continue on augmentin thru the winter for Pandas/strep, tho I don't believe augmentin is a common abx for lyme. LLMD just wants to make sure strep doesn't re-enter the picture.

 

The key for us was that DS would have periods of remission with just augmentin, but he stopped returning to baseline and remissions didn't last longer than 2 months. I initially discounted lyme because DS responded well to prednisone and I didn't see a 4 week cycle of behavior changes. But LLMD explained that a month of prednisone taper wouldn't necessarily exacerbate lyme symptoms and the pain relief could be significant, so in one sense it was helping.

 

All I know is that the boy who struggled to write an 8 sentence "book report" last spring wrote a 4 page Halloween story a month after adding bactrim and the boy who tired after reading one sentence of a book 8 weeks post-IVIG this summer just read 150 pages in three days. I know it's not going to be all sunshine and roses - we still have muscle pain, occasional memory and attention issues, spelling still stinks but is slowly getting better - but he's light years better than just a few months ago. So I'm glad I didn't get accept the "negative" igenex report and pursued treatment based on those "indeterminate" bands. I'm not against IVIG at all. And I don't mean to hijack this thread. We've just had far better results by using the right (for my son) combo of abx.

 

I do hope someone chimes in on your second question re: HD/LD IVIG. That's something I don't have any experience with. It sounds like a tough decision. I hope you find the right answers for your sons.

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