IVIG help please!

[browneyesmom]

We spent all day down there today & she did not get an infusion - we were told (on arrival) she got the full dose yesterday. After I went to medical records to get copies of all her records, I learned that she actually got 1g/kg of Gamunex each day (two days in a row), so given her weight, she actually got 32.5g each day for a total of 65g over two days when she was inpatient at Christmas.

 

Yesterday, she got 400 mg/kg, which came up to 12 g. She has a deficiency of IgA & IgG & after a couple discussions with our Immunologist, he indicated he could not find any research about the amount to give to kids who have PANDAS. Thus, he was not comfortable giving more than that amount. The infusion she got yesterday was less than 1/5 the amount she got when inpatient 3 weeks ago. Hmm... I really do not know what protocol is for PANDAS kids.

 

So, my question is this:

 

What dosages have others who get IVIG every 21-28 days been getting and if there is any research anyone knows about for it's indications in PANDAS kids, can anyone direct me to the research so I can forward to our Immunologist?

 

As for our day today and what happened... they told us yesterday she would have the rest of the infusion today and left in her IV access. It was bothering her last night and I told her I could D/C it if it was too uncomfortable and they could just stick her again when we got there. She wanted to try to get through it and she did, but it was not pleasant for her.

 

Confusion abounded in many areas (way too much to get into here) & Mommy was not too happy, but for now, I guess that we just have to pray this will hold her long enough to see Dr. B in a couple of weeks.

 

Also, that hospital's health care doctors & other staff will soon be educated about her condition as a result of the discussion I had with two nurse managers. So, not a completely wasted day if that comes out of it & they are better able to care for her and other children.

 

I've been telling my husband that I feel God calling me to educate others and increase awareness of this condition... not exactly the way I would have done it, but I guess He made sure it got done! lol ;~)

[peglem]

Every 3 to 4 weeks, my daughter gets 1.5g/kg. We do it in 1 day (which really makes things easier!). But when we started last march, she was getting less than .5g/kg, which I think is the standard dosage for immune deficiency. The higher doses are used for auto-immune issues. After 2 at the lower dosage- my daughter was getting worse. I did a bunch of research and brought it with me to the immunologist, thinking I'd have to show why I wanted the higher dose. But he just said after reviewing the literature, I believe she needs 1.5g/kg, and we've been doing much better with the higher dose. Honestly, I don't remember what the research was exactly, that I brought to share with the doctor, but I'll bet your immunologist could find out, just like mine did.

[Phasmid]

My son's PANDAS doc gave him a total of about 25 grams in one day (2.5 hours)

He will get ivig every 21 days

[NancyD]

We have also done 1.5 g/kg in one day and that has worked well. And like Peglem, the lower doses have always made DD worse, even though she had low IgG levels in the beginning. Next infusion we will increase to 2 g/kg and we will do it in 2 days since Dr. B does it at a slower rate than Children's Hospital does and DD has a hard time with it taking all day. We will not leave the line in. DD would really hate that!

[bronxmom2]

Hey, sorry to highjack the post but how did you persuade Dr. B to do 2 grams rather than 1.5?

 

Browneyesmom, we also had a bad result (and a huge flare-up) with lower-dose IVIG (1 gram); however, it has worked for other people in the long run.

[browneyesmom]

Thanks for all the feedback.

 

I left it up to DD11 to decide if she wanted to leave in the line or get stuck again the next day. What upset me about that is she had to have that access in her arm overnight and wound up not having an infusion the next day... which could have been avoided had the orders been checked before we left. ..

 

I'm searching for research that indicates a higher dose is indicated for PANDAS kids, but not getting too far yet. If anyone has any information on research, I'd so appreciate the information. She's not having the best day today so far & Dr. B appt is still a couple weeks from now...

[peglem]

I'm searching for research that indicates a higher dose is indicated for PANDAS kids, but not getting too far yet. If anyone has any information on research, I'd so appreciate the information. She's not having the best day today so far & Dr. B appt is still a couple weeks from now..

 

Studies have not been done (yet) for IVIG in PANDAS. However studies w/ other autoimmune diseases seem to show that for autoimmunity higher doses are more efficacious and several studies indicate that IVIG is inflammatory at lower doses, but anti-inflammatory at higher doses. Here are a few abstracts that indicate the anti-inflammatory effects are dose dependent:

 

http://www.ncbi.nlm.nih.gov/pubmed/21207645

http://www.ncbi.nlm.nih.gov/pubmed/19883419

[NancyD]

Bronxmom2,

 

I did not have to convince Dr. B. At our second visit in December he suggested doing 2g/kg if DD's anxiety and OCD did not decrease after the last infusion (#3 HD infusion -- Note: DD also did monthly infusions at LD for 1 1/2 years). We saw a bit of a decline for a few days but it's still just as high so we will try two more infusions at 2 g/kg. If nothing, then we'll stop. Since starting treatment for LD almost 3 months ago we discovered the healing process after each HD infusion is pretty instantaneous for DD. We no longer see "turning back of the pages" like we used to see. None of the old symptoms (I.e., tics, violent rages, difficulty with school or sleep, etc.) have come back. Now it's just anxiety and scrupulosity we are dealing with.

Edited January 15, 2011 by NancyD

[browneyesmom]

Nancy... when you write "LD" - you noted that twice in your last post - does the first one mean "Low-Dose" and the second one mean "Lyme Disease"... or did you mean something altogether different? Thanks!

[norcalmom]

I would not jump into multiple ivigs right away, unless there is clear immune def. and then my understanding is it would be at a low dose.

 

There isn't any evidence that multiple high dose ivig is better than single does. More does not equal better. I'd also be asking if there are any studies on the use of monthly high dose IVIG (with or without pandas!) and side effects, AND ask Dr B if he has had any patients that were on monthly high does had side effects or got worse, or were not responsive.

 

Personally, I think its always prudent to go with the Minimum Effective Dose.

[browneyesmom]

Hi norcalmom,

 

Yes, of course it is always prudent to go with the minimum effective dosage. Perhaps you missed my original post on this thread where I noted I am uncertain of IVIG indications for PANDAS kids and am seeking research on it?

 

You may not be familiar with my child's hx, but she indeed does have an immune deficiency and we have tried everything else the last couple of years. She's been unable to clear a strep infection since last spring (regardless of which antibiotic or dosage) and is extremely ill at this point - has not been in school and rarely ever to do homebound... not to mention all the other ongoing issues she has, bless her heart. We do need to find a way to stop the relentless attacks on her brain, while hoping it is still reversible in her case.

 

At this point, I am seeking research data as I never jump into any treatment for her without doing the homework.

 

Can you please point me to the references on which you base your recommendations? Thanks!

Edited January 15, 2011 by browneyesmom

[NancyD]

Sorry Denise...yes, meant "low-dose" for first LD and Lyme disease for second LD. I should also add that we found no benefit whatsoever to having monthly infusions (and negative effect with monthly LD). In hindsight, I wished we had done 2-3 HD infusions spaced out 3 months apart. The ONLY reason we are now doing a series of 3 HD infusions over a 3-month period is because our insurance company would only approve IVIg for 3 months and Dr. B wanted to squeeze in 3 HD infusions to see if it would improve DD's anxiety and OCD. This was a tough decision for me since it has always taken 10 weeks post infusion to see any results. But both Dr. B and Dr. Bock felt we should go for it so we did. My gut tells me that it will be the Lyme treatment and time that will eventually heal the remaining issues. BUT, I could not watch this one opportunity to do another HD infusion pass us by since I had been appealing the insurance company for almost a year.

 

Nancy

 

Nancy... when you write "LD" - you noted that twice in your last post - does the first one mean "Low-Dose" and the second one mean "Lyme Disease"... or did you mean something altogether different? Thanks!

[norcalmom]

Its actually Norcalmom...Check on pandas network for papers.

 

here is the page on their site that lists them.

http://pandasnetwork.org/impact-on-the-family/summary-of-vital-pandas-studies/

 

How are things since the first IVIG? It takes a few months to see if the IVIG is going to have an effect, but most people report some pos. changes at 6 weeks-12 weeks. For really horrific cases, some have been able to get PEX - which is immediate.

 

You are looking at different protocols, as far as I can see - immuno deficient, and pandas. there are kids that are both. My understanding is the immuno deficient do low does, more frequently. That is why your immunologist is advising that.

 

Pandas is usually treated one time - at high does of 1.5 or 2.0 - given over a two day period -this is what your daughter got int he ER. A couple of docs are trying high does more frequently (3 or so times every 4 or 5 weeks). I don't think there is any evidence it is more effective, and this protocol is much newer.

I re-read your story. Things are very bad for you and your daughter right now. I understand the need to to everything you can. But, unfortunately, IVIG isn't immediate for pandas. And, there are some cases that don't respond at all to IVIG.

 

AND most importantly, if she has a known, uncleared strep infection - well, seems like she is just going to expose herself immediately post IVIG and relapse. Is a bad situation...I don't know what to tell you. I've read numberous post that if kids get re-exposed, or find out they had some choric underlying infection prior to IVIG usuallly replase.

 

After we got one, and I found out others were getting several in a row, I was thinking we should get THAT doctor and get more. I'm happy I didn't. It takes time. Your daughter sounds like a more complicated case than my DS, with the immuno def. aspect , adn inability to clear a know strep infection.

During the time while I was waiting to see if the IVIG was going to work, we uncovered extremely high mycoPlasma titers. I now think we are dealing with a chronic infection - and eliminating that may be the answer to getting my son from 80% better from IVIG to 100%. when that is gone then I can see if he will need another IVIG.

 

I know your story is different, and I wish you the best with these very difficult decisions, and getting rid of that strep. Has had any strep since IVIG?

[melanie]

Hi Guys

 

We do 1 g every 21 days for immune defiency/PANDAS, and friday will be #17 .I have seen a alot of benifits from these infussions.I wouldnt say 1 gram is "low",maybe lower than 2g but in the immunoplogy world its not low.

PLEASE browneyes find a MD that you trust,someone qualified to make these decisions.

Im uncomfortable with some of these drs making tons of money off of this stuff,makes me ill.

 

Wishing your family well

 

Melanie

[browneyesmom]

Ok, this is the 4th time I have tried to respond to this thread - she is not having a good day today. Seems like she had a decent evening the first night she had the lower dose IVIG, then has been going downhill since. She just had another full blown rage episode - first one in a few weeks, since the first IVIG (HD - 2g/kg, given in 2 infusions over 2 days) in the hospital. I had just given her the Risperdal about 15 min earlier. It lasted about 20 min. After her bath this am (yay - got that done!), she told me she felt "weird", but could not describe it. A few min before the episode, she was fanning her face, saying she felt hot.

 

Anyway... back to this thread....

 

Thanks for the clarification, Nancy.

 

Yes, sorry about the name confusion, Norcalmom... saw that earlier & edited to correct it about an hour later. I'm familiar with Diana's PANDAS network site, thanks. The research there is mostly supportive of IVIG; only one research study found no indication for it. I'm clear about why our Immunologist is going with the dose he did (and why her pediatric neurologist ordered the dose he did when she was inpatient for a few days); however, her case is the first PANDAS case he's ever had. He'd never heard of it before I told him about her case a couple of years ago.

 

Thus, I'm again in the position of researching on my own as most of the docs in our area are not too familiar with PANDAS or what to do to help her get well. Fortunately, I'm a nurse and have access to full research articles, so that helps. There does seem to be some literature that indicates IVIG may help to close the blood brain barrier as well as the obvious benefits of supplying healthy Ig. Gosh, just so doggone hard to get too far on this research today with her having such a hard time!

 

They have not tested her for strep in a while, but she is on a 6 week run of antibiotics currently - don't yet know if that will be extended or not. Yes, she does have a complex case with several co-existing conditions, some of which I've not gotten into here. We are also running more labs on her and do not yet have results of the lyme or myco. Nothing will be done before we have those results anyway, but I want to be prepared since she has been so ill for so long.

 

Thanks Melanie... we see Dr. B on Jan 26.

 

I should also inquire what medication each of you are having with your kids as different meds will have different concentrations. We're on Gamunex.

 

Thanks again everyone - I so appreciate the information!!

Edited January 16, 2011 by browneyesmom