To IVIG or not to IVIG?

[GraceUnderPressure]

I am trying to figure out what we should do. As mentioned in my other post, we got our result (singular!) from the Cunningham tests & the Cam Kinase was 146 which the dr. said was not really significant, esp since all the other strep tests & my ds18's symptomology are negative for strep.

 

I actually believe my ds is a PITANDS not a PANDAS and told the dr as much - that I had expected it to be myco because my ds7 had had all the sx's of it.

 

I was surprised when my ds18's myco test was negative on the IgM, but it was positive for previous exposure on the IgG. However, my ds7's myco tests were negative on both so I'm at a loss on this whole mess.

 

We recently got hit with another(same?) bug: sore throat followed by sinus along with some nausea & upset stomach. DS18 has not gotten it, BUT his ticcing has gotten worse. (And ds7 got a mild case but has increased anxiety & started chewing his shirts again)

 

Dr said he would give us doxycycline to try, but I noticed that it's the anti-inflammatory dose of 100mg, not the higher antibiotic dose. Dr also surprised me by saying that we could try IVIG, said he has gotten good results with using Dr. K's two days in a row protocol. And I have only to let him know if I want to try it.

 

But aren't all infections are supposed to be addressed before doing IVIG? We haven't checked ds18 for clostridia & sinus infection is DEFINITELY a possibility as he has had sinus allergy issues since he was an infant - relatively mild, but pretty constant.

 

This is so ironic with all the brick walls out there! It's almost like being handed a blank check! But as I told my dh - I feel like I got into a car expecting the dr to be the driver & suddenly find myself holding the wheel. I have little clue where we're going or how to get there!

[texascatholic]

I can really sympathize with you. We don't know what's affecting DD9 either (low titres for strep, reacts to viruses). We just had IVIG done Wed. and Thurs. of this week for the first time. I will let everyone know how it works for her. Igenex blood draw is next week.

[texascatholic]

I can really sympathize with you. We don't know what's affecting DD9 either (low titres for strep, reacts to viruses). We just had IVIG done Wed. and Thurs. of this week for the first time. I will let everyone know how it works for her. Igenex blood draw is next week.

[texascatholic]

I can really sympathize with you. We don't know what's affecting DD9 either (low titres for strep, reacts to viruses). We just had IVIG done Wed. and Thurs. of this week for the first time. I will let everyone know how it works for her. Igenex blood draw is next week.

[GraceUnderPressure]

Thanks, I would really love to hear how she does! You're seeing Dr. R in Dallas, too, right?

 

I should have mentioned that we had an Igenex panel done & everything was negative, but somehow Lyme got left off! We figured bartonella was a much more likely culprit than lyme, though, (flea exposures, yes; tick exposures, no), and since that was one of the negatives, decided not to bother paying out more for them to add on the lyme test.

 

DS18 reacts to viruses as well - what can be done for that? He had pretty high titers from his MMR shots - esp rubella which came very close to the "alarm bells" level. Seems like something has his immune system set on hyperdrive when it comes to viruses.

 

Almost all of his neurotransmitters were out of whack. All of his excitatory ones were above normal and all of his inhibitory ones were below normal - gee, maybe THAT has something to do with why he's ticcing all day long.

 

Dear Lord, grant us the healing we seek for our children! (And the ability to afford it!)

[LNN]

I can only offer you my personal experience...all of the aggressive steps we took with my DS brought some sort of benefit, but not always the one we expected. When we did pex 11 months after his first confirmed strep, pex eliminated tics. When we couldn't keep DS in remission for more than 2 months at a time, we did IVIG. It was a horrible recovery - 8 weeks of ugliness. I don't think IVIG did anything for his system (no change in IG levels or C3D immune complex levels in the before/after testing) but it might have given us the lyme answers we needed. Prior to IVIG, DS's standard western blot was entirely negative. 9 weeks after IVIG, his Igenex lyme panel came back positive or indeterminate on enough bands that our LLMD was convinced that Lyme was part of our problem. 2 months into a lyme protocol, DS is reaching new levels of recovery - improvements we used to only see with prednisone before. So it's been like peeling the onion. No single treatment did it for us, because we had an underlying chronic infection. But we didn't find it until after IVIG.

 

So for us, IVIG was an expensive "lyme challenge" that may have brought enough of a herx to turn tests positive. Had we been inclined to look for lyme earlier, maybe we could've accomplished the same thing with various antibiotics with an LLMD. But it's all could've/would've/should've at this point.

 

So should you do IVIG? I think it depends on your financial situation. I don't think it will do harm. But if you suspect a chronic infection, I don't know that it will eliminate the source of your problem. It might make the source easier to find. But you might also accomplish the same thing working with an LLMD - not necessarily for lyme, but they seem better informed on other bacterial and viral infections than most doctors.

 

So long winded way of saying do what's most affordable. If IVIG will be covered, it may help, but if there's a chronic infection, I think you may not get the "cure" some kids do. If IVIG will take a big chunk of change out of your pocket, consider an LLMD who can do various tests and challenges to try to tease out the infection in other ways. Most of all, don't give up. You may not have expected to be the driver, but I bet you'll make it to your destination better than you think.

[texascatholic]

Yes, we see Dr. Rao in Plano and Dr. Infante in San Antonio. I loved your

comment about the "driver's seat." I know exactly how you feel.

 

God bless you and yours!