IVIG # 2 do more harm than good?

[Worried_Dad]

I also want to note that I do think that the hdIVIG may still be beneficial for many of these children, but I think that it is so important to treat the infections first because some of these infections, unlike strep, need multiple antibiotics and for longer periods of time.

Elizabeth

 

Excellent point, Elizabeth, but I wanted to add that - even if it's just strep - the "standard" dose of abx for standard duration doesn't cut it for many, many "classic" PANDAS kids. Our son is pretty clearly PANDAS (rising ASO with each exacerbation, positive response to steroid burst, entire family showing elevated ASO) but didn't sustain progress until 10+ months of high-dose augmentin XR. Dr. K's "normal" prophylactic dose (500 mg of augmentin once daily) was ineffective - our son had his worst exacerbation ever while on that dose.

[momto2pandas]

I also want to add that sometimes, in cases of significant immune deficiency, it may not really be possible to treat the infections first. We tried for months and months, with high doses of all kinds of antibiotics, to get rid of active strep infections in the boys, and the infections just kept getting worse until they got IVIG. If I had to do it again, I would have gotten their immune systems tested earlier and gotten them onto IVIG when we got the results we did, before trying a dozen different courses of various antibiotics.

[nevergiveup]

About higher or lower doses:

 

Its this kind of language, Nancy, and generalizations that are limiting our info and search for help for our children. Low dose may not be as helpful as high dose. Autoimmune disease takes a higher dose ivig to help redirect or stop production of antibodies(two theories of how ivig works) But it is not necessarily true it makes things worse. Gosh, High dose can really rock everyones word with turning back of the pages. That's not worse, just healing, right? There are several kids on this forum that are not worse on 1 gram. And many kids whom had no success with monthly 1 gram ivig had lymes, not best treated by ivig. I want to make sure we are not limiting care by making unsubstantiated generalizations.

[momaine]

Philmom,

On aug 10th, there was a post asking how Lauren Johnson was doing? However no history exists on this thread, and she has no history in latitudes, which I can totally understand since she is using her daughters REAL name on the forum. So... Since u are a close personal friend I will default to what u know about her dd's treatments. I must have misread, I just remember the four weeks and thought wow that's a lot of ivig. Maybe she mistyped it and meant 8.

there was one thread that she mistyped it on but then she corrected herself later in the thread, but she's recieveing hdivig every 8 weeks, last I knew which was a month ago, or so.

[Priscilla]

I think we should all remember that alot of communication is lost thru email (body language, which is the biggest %)so sometimes it is easy to mistake someones intent. However, we are ALL parents trying to get our children well. This is a VERY overwhelming process for all of us. Our decisions as parents are based on what we know about our children (better than anyone else) and the knowledge we have at the time.

 

With that said, ALL PANDAS treatments are experimental, if someone had the right cure/ treatment, none of us would be here. I just wanted to make that statement, because I have noticed some pretty judgemental statements which have almost made me not want to participate. But in the end, we are all having crisis, and the support (which grossly outweighs the negativity) is what we should all be promoting here. Best wishes to you all.

[KeithandElizabeth]

Hello:

 

I just want to add that, like momofgirls, we started this journey over a year ago with an immunologist who felt that we needed monthly IVIG's to cure our son and to prevent future autoimmune issues. Whenever you see a certain type of doctor, they will judge the situation by their particular perspective. We were scared to death and began monthly IVIG and shared our story on this forum. Our son initially did wonderfully and than began to backslide.

 

Then we discovered that our son actually had additional bacteria/viruses causing his issues and we stopped the IVIG's and we are now doing the lyme treatment and we are seeing great success.

 

For our family at least, we are learning that a weak immune system was not really our issue, but a compilation of stealthy bacterias were weakening the immune system. Now that we are appropriately treating the bacterias, our son's immune system is getting stronger. We may discover something new and we may be making additional mistakes, but we are sharing what we are learning with everyone so we can all learn from each other.

 

I think that the attacks on this forum are fear based and I understand this because I have never experienced such fear in my life as I have this year.

 

So, please, lets be gentle with each other and support each other! Momofgirls has been a savior to me this year and I could not have made it through this experience without her support. Now we need to support her as she begins her lyme journey!

 

elizabeth

Edited September 8, 2010 by KeithandElizabeth

[kimballot]

Ok, Ok... so what can I learn and take away from all of these posts?

 

1. It seems to me that it is important to understand infections to the best of our ability before beginning iVIG. I understand that in many cases we cannot remove ALL infection before IVIG, but it certainly does not seem prudent to blindly go in and administer IVIG without knowing what infections are lurking in the body.

 

2. Many folks have gone ahead and gotten IVIG for their kids in the last year. It seems that some feel that high dose is better for PANDAS. However, as nevergiveup points out, we really do not have any scientific study of this. Dr. K seems to prefer it and some parents have reported doing better with High Dose than low (though we will never know if it was the high dose or just the repeated IVIGs that helped).

 

3. It sounds like Dr. K has not had good outcomes with repeated IVIGs (from what people have said)... or at least that he is skeptical of the benefit of repeat IVIGs. He has lots of experience with IVIG but he is a clinician and not a researcher, so there is likely some bias in his opinion of this (as there would be with any clinician).

 

4. It sounds like some kids are doing very well with repeat IVIGs on a scheduled basis with some docs.

 

5. I am hearing that the kids who are not doing well with IVG number one or are not doing well with repeat IVIGs often go on to test positive on the igenex lyme test. It sounds like Dr. B may be seeing this more than other docs, but that may just be the folks who have posted here.

 

6. Several parents who's children fit category #5 (above) report that their children did very well once they were started on antibiotics to address the lyme or coinfection issue.

 

7. Kids without underlying lyme may do better with IVIG (such as Mom to 2) than kids with lyme.

 

8. We are all learning from each other, and no one here makes all the right decisions. It is wonderful that we share our experiences - good and bad- and it is important that we feel safe in doing that.

 

9. What did I miss??

 

I, personally, want to thank all of you out there who have been my teachers, mentors, tutors, and counselors over the past 6 months. I do not know what the "right" things are to do with my son... but I am doing the best I can. My husband and I listen and consider what the doctors say, what I read on this forum, what i read elsewhere, and our own "gut" when deciding what to do. My son is not perfectly healthy, but he is light years ahead of where he was 6 months ago. I am SURE we will have some backsliding this year and it scares me to pieces just like I am sure it scares all of you.

 

It is funny... we all get frustrated when mainstream medicine tells us what to do and does not give us choices... then we get upset when non-conventional medicine says "I am not sure what is best - what do you think?"

[Priscilla]

I have to agree in some ways. There seems to be so much info, and so many causes of these symptoms, it is overwhelming. I work in the medical field and firmly believe if you look hard enough (in anyone) you will find disease. I am not discounting those of you that are seeing progress with Lyme treatment, that is great, and I am very happy for you. Our bodies are designed to fight things, and so our children are having some deficiency in doing that, but going down every single path, and trying EVERY medicine can not be helping them heal, maybe masking symptoms, but not healing. Then on top of all the stress from dr visits, labs, having pills pressed upon them.... I can't imagine it helps. We have scaled back alot, we are focusing on decreasing stress and increasing positivity in our house, as well as practicing unwaivering faith. I can't say my dd is doing great, rage is still out of control, maybe a little less frequent. But I can see "her" again, in between. Even having alot of fun between "wolly" monster visits. I was personally told by God that it was going to be "ok" - I am not forcing any opinions on anyone, but my lesson in all of this is to SLOW DOWN.. be there for my child, not be absorbed in putting faith in dr's. Dr's weren't able to help us with the intial infection that probably caused all this (an undiagnosed strep throat for several weeks less than 1 yr old) so why put all my faith in them now. My faith is in God, he will see us through. Prayers to all of you.

[nevergiveup]

Kimballot, I like the way u summed it all up, except I also want to point out that Dr K does do multiple ivigs, I am not sure he is against them for sure! Plus I want to reemphasize that a lot of families whom said low dose monthly ivig didn't produce the improvement they wanted now have lyme. I think for me this is critical to point out!!!! And finally becuz I love to use MS as an example, as SFMom reminded everyone that I have it, I want to let everyone know that MS being a default diagnosis (no true blood marker) has many drugs out there, not all drugs work for all those diagnosed with MS. Why, well becuz MS is probably 4 different diseases with different mechanisms and triggers. Now after 20 years of saying ivig does not work for MS, new studies show with the right dosage and intervals it does offer much hope. So we all know TS and OCD are symptoms, how many different diseases could thay really be. My neurologist says at least 4 maybe more.

[kimballot]

On Dr K and multiple IVIGs:

 

Oh..yes.. that is what I thought I said in #3 when I said he was skeptical of multiple IVIGs but perhaps I did not state it well. Thanks for the clarification. For the record - that is just what I was reading in these posts - not my personal experience with Dr. K or any other doc!

 

Thanks for the clarification.

[kimballot]

Nevergiveup - I always like your analogies. Yes... MS is a very good example. Probably many underlying causes, but similar symptoms. I think PANDAS/PITANDS is the same. I think our kids have different underlying infections but all end up with inflammation that causes a breach in the BBB with increased cam kinase and those scary neuropsych symptoms!

 

Kimballot, I like the way u summed it all up, except I also want to point out that Dr K does do multiple ivigs, I am not sure he is against them for sure! Plus I want to reemphasize that a lot of families whom said low dose monthly ivig didn't produce the improvement they wanted now have lyme. I think for me this is critical to point out!!!! And finally becuz I love to use MS as an example, as SFMom reminded everyone that I have it, I want to let everyone know that MS being a default diagnosis (no true blood marker) has many drugs out there, not all drugs work for all those diagnosed with MS. Why, well becuz MS is probably 4 different diseases with different mechanisms and triggers. Now after 20 years of saying ivig does not work for MS, new studies show with the right dosage and intervals it does offer much hope. So we all know TS and OCD are symptoms, how many different diseases could thay really be. My neurologist says at least 4 maybe more.

[nevergiveup]

ALL have very legitimate points and views. All should be heard, if not this forum would be useless. But I vote we all go to bed now! I am tired, and my dd had ivig today, and will need my full attention tomorrow.(She gets a little headache)

[kimballot]

I vote we all go to bed now! I am tired, and my dd had ivig today, and will need my full attention tomorrow.(She gets a little headache)

 

wimp!

Seriously, though - thanks for the great online conversation and thought provoking statements.

 

Best of luck with dd tonight and tomorrow - hope all goes well!

[nevergiveup]

Ok one last controversial This is her 12th one, she's a pro! She is my hero for sure. All these kids are hero's! I still cry privately every time she gets one. Goodnight.

I vote we all go to bed now! I am tired, and my dd had ivig today, and will need my full attention tomorrow.(She gets a little headache)

 

wimp!

Seriously, though - thanks for the great online conversation and thought provoking statements.

 

Best of luck with dd tonight and tomorrow - hope all goes well!

[EAMom]

 

 

 

5. I am hearing that the kids who are not doing well with IVG number one or are not doing well with repeat IVIGs often go on to test positive on the igenex lyme test. It sounds like Dr. B may be seeing this more than other docs, but that may just be the folks who have posted here.

 

6. Several parents who's children fit category #5 (above) report that their children did very well once they were started on antibiotics to address the lyme or coinfection issue.

 

 

 

Nice summary Kim! I just have some thoughts re. #5 and #6.

 

5. It makes sense that Dr. B. would be seeing more Lyme than some of the other docs since he practices in CT (Lyme territory!) and likely attracts many folks who have lived or vacationed in the surrounding areas (Northeast).

 

6. I wonder if the "key" isn't always that these kids do (or do not) have a tick borne dz (lyme etc.), but that they actually needed more aggressive antibiotic tx (maybe for intracellular strep, maybe for lyme). Take Worried Dad's kid for example (who for the sake of argument, we will say does NOT have Lyme). But, if he did get a (mistaken) Lyme diagnosis, this would lead a LLD to rx high doses/long term abs (eg. Azith. etc), and then (voila!) WD's son improves (after making marginal headway with multiple IVIG's). It would be easy to say, "Wow! the Lyme was the key." Even if in reality, it wasn't Lyme, and just lurking strep (and strep in the household) which needed to be addressed with more potent full-strength antibiotics. So, I guess what I'm saying, is that it could also be possible for a non-Lyme PANDAS kid to improve if treated for Lyme. (Here I go ruffling feathers!)

Edited September 8, 2010 by EAMom