Update on Dr. B and IVIG

[browneyesmom]

We did go to CT to see Dr. B and it went well. We were very pleased with Dr. B. Flight was canceled due to the snowstorm, but they were amazingly efficient and got high dose IVIG approved for her through our insurance and she had it the next morning, so that was done before we left. She got 45 g Gammugard (1.5 g/kg). She is scheduled to return in 2 more weeks (4 week point) for her next infusion. He eventually hopes to drop her to once every 8 weeks once she is stable.

 

 

 

We see improvement each time, but she was so sick… she has a long way to go still.

 

I had to see our Allergist/Immunologist today for myself - have asthma. While there, I provided him and his nursing staff with both of Dr. B's cards. I told them she has every symptom on the list and directed them to PANDAS Resource Network... told them he is medical director there and wrote the medical section. We’ve been working with him as well, about the possibility of doing the high dose IVIG infusions locally. Previously, he was reluctant because he could not find research literature on it. I provided that today. He’s re-considering… wants to look over the research literature further and perhaps try to get it approved for us to have it done here at home through our specialty pharmacy.

 

Before our doctor came in the room to see me today, he looked it up and then told me he did find research literature from 1999 that indicates IVIG is effective treatment for PANDAS kids. So, he said he wants to look into it further, but he does not have a problem trying new things if he has research to support it.

 

Hooray for forward thinking docs!!!! Yayyy!!!! :~)))

 

While we really like Dr. B and he will likely remain part of her medical team, it would be LOTS less expensive to have her infusions done locally.... and it would be great to see more docs getting on board with this!

 

We will be in CT again in 2 weeks for IVIG there since there's no way our local doc can get it approved and moving for us that quickly; but, he is going to pursue it further and for that, I am so thankful!

 

We're also still waiting for Dr. B to write our Pediatrician and Immunologist here as a follow-up to the appointment she had there with him two weeks ago. I would have thought this was standard practice as it always has been with other specialists, but the impression I got with them on the phone when I called today is that it's only done if requested and then, it will take a while.

[browneyesmom]

I've been a little swamped last few weeks... here is a post I wrote for our blog - don't think I ever got it over here, but following up as I know people wanted to know what happened when we met with him.

 

We traveled to CT to see Dr. Bouboulis, a well-respected Immunologist who specializes in treating children with PANDAS/PITAND.

 

His impression is that she has actually had this condition at least since she was 5-6 years of age; however, it became severe when she was 9 years old.

 

He plans to continue antibiotics for her as well as IVIG infusions. He indicated that children with CVID (Common Variable Immune Deficiency) like Christine has, require IVIG for an extended period of time in order to ‘turn off’ the gene that triggered the auto-immune response that is causing encephalitis in her basal ganglia.

 

His office was able to obtain approval from our insurance company through August (they will re-submit at that time) for her to have one there at the infusion center before we returned home since she has been so ill and in crisis. (Some of you may recall that she had HD IVIG when hospitalized at Christmas.) She had another infusion 3 weeks after the one at Christmas, but it was a substantially lower dosage. This was her second HD infusion of IVIG. We will return in 4 weeks for the next.

 

Her LFT and prophyrins remain elevated; her medical team is continuing to watch those as well as monitor her other medical conditions. Dr. B is also testing for co-existing infections.

[eljomom]

Thanks for the update. I can't believe how quickly he got you IVIG, after hearing of people trying for MONTHS!!

CAn I ask what co-existing infections he is testing for? This is something I really want to look into. Also, what is CVID?

Praying she continues to improve!!

[browneyesmom]

I think that it was faster getting her approved because she already had a documented Ig deficiency. Also our immunologist here had already put her through the process to have Ig infusions at home and that didn't take several weeks. I anticipate we may have to go through another approval process if we want her to infuse at home. But having said that, I was also amazed at how quickly they obtain approval.

You can have anything... he is testing her for:

 

Myco

IGeneX for Lyme

 

He's also re-checking:

Strep titers

LFT, which has been elevated.

Urine porphyrins, which have also been elevated

Ig levels ... he said he likes to see PANDAS kids around 2000 for IgG ... she's only about 25% of that.

CVID = Common Variable Immune Deficiency ... it is an immune globulin deficiency.

[eljomom]

IgG 2000!! Gosh, my dd7 was like 862! Wasn't flagged as low though. Could that depend on age??

[browneyesmom]

I don't know... lab that did hers would not have flagged that as low either. I also wonder if it's because she has CVID... or, if Dr. B meant that is what needs to be achieved to turn off the gene responsible for the auto-immune cascade.

[norcalmom]

That must be a typo.

 

The normal ranges vary a lot depending on what lab, and who's chart you are looking at. Our immuno said he wouldn't consider it really low until under 500 (for a 10 year old)

 

NORMAL 9 - 11 yr IgG: 608 - 1572 IgM:52 - 242 IgA: 45 - 236

 

That is from the chart for my insurance carrier. Similar to others you will find online. Our lab consideres under 800 low. My son's was 689 prior to ivig and 801 after ivig.

[eljomom]

Anyone have the values for a 7 year old? Also, IgG subclasses for 7 year old?

[browneyesmom]

If you're referring to wanting to see IgG levels around 2000, it is not a typo. That is what Dr. B told us when we met with him 2 weeks ago. Our lab did flag hers as low, but they were below the 'lab range' which was upper 600's for our lab.

Note that the statement "I like to see them around 2000 for PANDAS kids was made by Dr. B at our visit for my daughter, who also has CVID.

Sorry, I do not know values for a younger child.