Jump to content
ACN Latitudes Forums

IVIG, Lyme and PANS


Recommended Posts

I've read older posts on this topic, but wondering what the current thinking is on this. When is it a good time to do IVIG? I have read in the past that if a child is PANDAS/PANS and needs IVIG, it is better to get the infection load down first or IVIG will not be as helpful.

 

My son has PANS, Lyme, Bartonella, Babesia. We are into our 15th month of aggressive Lyme and co-infection treatment - last 4 months have been doing IV abx. His IGG levels have been very low for the last 6 months and it looks like we have a shot at getting IVIG approved by insurance for immune deficiency, knowing it will also help with the PANS symptoms.

 

LLMD is recommending HD IVIG as we continue Lyme and co-inf treatment. How do you know if it's a good time to do the IVIG? My gut says he is ready. He has made a lot of progress on current treatment, but I worry that the autoimmune PANS side of things won't resolve without IVIG.

 

Thoughts?

Link to comment
Share on other sites

I've read older posts on this topic, but wondering what the current thinking is on this. When is it a good time to do IVIG? I have read in the past that if a child is PANDAS/PANS and needs IVIG, it is better to get the infection load down first or IVIG will not be as helpful.

 

My son has PANS, Lyme, Bartonella, Babesia. We are into our 15th month of aggressive Lyme and co-infection treatment - last 4 months have been doing IV abx. His IGG levels have been very low for the last 6 months and it looks like we have a shot at getting IVIG approved by insurance for immune deficiency, knowing it will also help with the PANS symptoms.

 

LLMD is recommending HD IVIG as we continue Lyme and co-inf treatment. How do you know if it's a good time to do the IVIG? My gut says he is ready. He has made a lot of progress on current treatment, but I worry that the autoimmune PANS side of things won't resolve without IVIG.

 

Thoughts?

 

 

My personal opinion? Go for it. We started a 1 year round of IVIG's just when we were starting to tx Lyme, because insurance happened to approve it after a bitter fight (we didn't know we were dealing with Lyme also when we started trying to get the IVIG, and knew we had had good results in the past with IVIG and PEX.) I decided to go through with the IVIG, and am quite glad we did. For us, it has made a world of difference..really made some incredible differences with my children. I'll do it again if they need it in the future.

 

But, since you have already done 15 months of lyme tx, I definitely think it's a great idea to go with the IVIG.

Link to comment
Share on other sites

I don't know why I thought that I had a say in the decision on when to start IVIG -- the ALMIGHTY insurance company denied the pre-authorization request and is requiring a peer to peer review. We got as far as a peer-peer 1.5 yrs ago and we were denied based on a PANDAS dx - big mistake, even though he said he would use the CVID dx. Now the dx is CVID and they are still denying - even though we have a year's worth of low IGG levels to back it up.

 

Ugh. I am tired.....

Link to comment
Share on other sites

I don't know why I thought that I had a say in the decision on when to start IVIG -- the ALMIGHTY insurance company denied the pre-authorization request and is requiring a peer to peer review. We got as far as a peer-peer 1.5 yrs ago and we were denied based on a PANDAS dx - big mistake, even though he said he would use the CVID dx. Now the dx is CVID and they are still denying - even though we have a year's worth of low IGG levels to back it up.

 

Ugh. I am tired.....

 

 

Here's what I would do:

1) start now to gather your information

2) Get a printout from the insurance company as to what they require to approve IVIG for CVID, and then really, really read it carefully.

3) Follow every single step it says to do, e.g. if they say to prove that the CVID has been making your child sick, then get dr. records from the past year to show how many times your child has been treated for bacterial infections during that time (in our case, it was 8 - 9 times in 1/2 a year per child...that's very significant.) I then followed up by telling them that I didn't want my child to have to be on abx forever, because he would build up a resistance. I also showed how many days of school my children had missed each of several years (up to 32 days for one of them, alone), to help prove that the child was getting sick all the time.

4) Any other requirements...make absolutely certain that you and the dr. both address them completely.

5) If you have to go to a 2nd level review (if the peer to peer is still denied, for instance,) that you have your information together that you need. But, the bottom line is that you have stick to the insurance company's requirements, and you can only do that if you know for sure what they require.

 

Good luck!

Link to comment
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
×
×
  • Create New...