Should I or Shouldnt I?

[melanie]

I know things werent good for the past 3 weeks and I feel like the last IV #8 may have mixed things up a bit,but the past 3 days hes like ..normal..hate that word but no anger no tics(very few) easy going .Its very weird , almost like jodies epipany(sp) moment.

 

Maybe he got a high enough dosage and he should wait .I dont want to mess this up.

 

Still havent heard from Dr B about insurance coverage with him yet.

 

The only differnt thing were doing is ,well 2 things

 

1. No minocycline

2.500 mg azith

3.10 mg sigular(was doing this so this doesnt count for #3)

 

I dont know what to do.

 

Melanie

[Fixit]

I know things werent good for the past 3 weeks and I feel like the last IV #8 may have mixed things up a bit,but the past 3 days hes like ..normal..hate that word but no anger no tics(very few) easy going .Its very weird , almost like jodies epipany(sp) moment.

 

Maybe he got a high enough dosage and he should wait .I dont want to mess this up.

 

Still havent heard from Dr B about insurance coverage with him yet.

 

The only differnt thing were doing is ,well 2 things

 

1. No minocycline

2.500 mg azith

3.10 mg sigular(was doing this so this doesnt count for #3)

 

I dont know what to do.

 

Melanie

 

So you dropped the mino...

doubled up the azith...

and he was already on sigular

 

is it possible to ask her to push it out a week.....to see how it goes....maybe the low doses are doing someing....are you trending to the better..or are the rebounds worse than.pre ivig...

 

but if you push out a week be prepaired to have cranky kid...it's usually the last couple of days or the last weeek where he seems to slip ....right?

 

I am glad you can see your real child!!!!!!

[melanie]

Yep I think minocycline is like the devil!!

 

I agree about the last few days before the next infusion being the cranky days ,but this month It was the whole month except for the past three before.So its kindof oppisite.The meds were already delivered ,I dont know if that matters.

 

Melanie

[sf_mom]

Melanie,

 

Do you know if he has any circulating immune complexes? There is some inference that the IVIG might bind to the immune complexes making the child worse before better. If there are repeated IVIGs it 'might be' that they are just continuing to bind raising those complexes and why he had such a hard time post treatment this time. So, a spike and then they start to settle out. I don't think it hurts to wait it out to see if he continues to improve. The (1 gram) treatment will be there if needed, correct?

 

Again, its been a very rocky recovery for us with days that seemed like there would be a regression and then BAM improvement.

 

 

 

 

 

I know things werent good for the past 3 weeks and I feel like the last IV #8 may have mixed things up a bit,but the past 3 days hes like ..normal..hate that word but no anger no tics(very few) easy going .Its very weird , almost like jodies epipany(sp) moment.

 

Maybe he got a high enough dosage and he should wait .I dont want to mess this up.

 

Still havent heard from Dr B about insurance coverage with him yet.

 

The only differnt thing were doing is ,well 2 things

 

1. No minocycline

2.500 mg azith

3.10 mg sigular(was doing this so this doesnt count for #3)

 

I dont know what to do.

 

Melanie

Edited July 14, 2010 by SF Mom

[Fixit]

Do you know if he has any circulating immune complexes? There is some inference that the IVIG might bind to the immune complexes making the child worse before better. If there are repeated IVIGs it 'might be' that they are just continuing to bind raising those complexes and why he had such a hard time post treatment this time. So, a spike and then they start to settle out. I don't think it hurts to wait it out to see if he continues to improve. The (1 gram) treatment will be there if needed, correct?

 

Again, its been a very rocky recovery for us with days that seemed like there would be a regression and then BAM improvement.

 

sorry if i'm repeating a question...

circulating immune compleses??? is that the name of the test or does it go by some other name???

[sptcmom]

circulating immune complexes are antigen-antibody complexes. I'll wait for Wendy on this. She's done a herculean amount of research and is very articulate.

Melanie Dr B and insurance- why wouldn't it be covered? He just needs to use same diagnosis codes (ICD9) and procedure codes (CPT) as Dr J. As long you're not getting same procedure from two docs it should be covered. office visits are usually covered by any PPO plan.

If Danny's stable I would try to push it out as further as I can. Read Wendy's explanation of the immune complexes and will give you more insight. I'm so happy he's having good days. That must be such a huge relief for you. BIG hug!

Jodie

[sf_mom]

Jodie, Although.... I've talked to a Dr. directly about the immune complexes and even had it diagramed for me, I only have limited understanding. My interpretation was that they bind to foreign proteins introduced into the body. They are found to often be elevated with Lyme Disease and may spike as a result of IVIG/foreign proteins or perhaps its a protein from die-off?

 

A friend's daughters were high, elevated even higher shortly after IVIG, settled some several month after IVIG and then started to rise again........ turns out her daughter was positive to Lyme. Not all people with Lyme will have circulating immune complexes though.

 

Ultimately, I think its important to follow your child symptomatically and look for baseline adjustments over weeks not days to determine if and when another treatment is needed. If you've done more than one high dose IVIG you really need to wait it out and watch for those adjustments of healing/regression and possibly rule out Lyme/co-infections via Igenex if you did not do them in advance of IVIG.

 

I too am glad he is doing better.

 

 

-Wendy

Edited July 14, 2010 by SF Mom

[sf_mom]

This is the best I could find on immune complexes and binding.

 

http://www.google.com/imgres?imgurl=http:/...%26tbs%3Disch:1

[lynn]

Thanks Wendy, that is a very clear article. My DS is high in circulating C3 complexes (blood draw from 2 months ago after a month of high dose augmentin). From your earlier discussion, I think you are saying that one reason some kids skip through IVIG and some have weeks of problems might be the presence or absence of these complexes (right?) The new antibodies bond with the circulating antibody-antigen group and this slows everything down? Or is it that the IVIG itself creates additional complexes and that is the problem? Are they bad in and of themselves?

 

Sorry for all the questions. I find this one of the more difficult concepts.

[sf_mom]

Hey difficult concept for me too. AND the answer is.......... I don't think they know for sure. However, in some people's experience the symptoms do follow the rise and fall.

 

So possibly binding to IVIG, binding to infection proteins or binding to die-offs proteins (herxing).

 

If they are present you definitely want them to fall within normal range and because it is common to have immune complexes with Lyme you would need to test your child throughly for Lyme and co-infections through Igenex.

Edited July 15, 2010 by SF Mom

[melanie]

Oh well,The good is over.Didnt last long.

He flipped at school angry and threw a chair,why because the schedule he wanted to follow was changed(hes 16) .

 

Iv #9 is tomorrow,not looking foward to it .Im kindof feeling bad for myself.

He started a new SE school,thery seem great ,they are positive always telling the good .Lets see how long that lasts.

As long as dan can do what he wants hes fine.

 

Melanie

[lynn]

I'm so sorry that you had to make the decision as the result of chair throwing! Good luck with IVIG! We'll be thinking about you!