Dr. K Interview, IVIG & Question

[MountainMom]

I was very excited to find this site with interviews with PANDAS/PANS specialists. It is informative and shows a variety of approaches to treatment. I'm curious about something that Dr. Kovacevic says and if this is reflective of experiences of those on this board who have older children/been in this for a while. He seems to feel that IVIG is necessary to completely eradicate PANDAS. He states that antibiotics and steroids can send symptoms into remission, but that without IVIG, symptoms will return at some point. I'm curious if this holds true for you?  He also believes that the IVIG is generally only effective during a certain age window. Have you found this to be true?

Thank you for your thoughts.

 

[bobh]

Interesting site!

I can't say anything about IVIG and the age issues, but feel that there are plenty of kids that have outgrown PANS/PANDAS, for example with puberty.  Maybe Dr. K. isn't including that possibility with his statement.

It seems to be our experience that puberty has made a huge difference that so far, has stuck for about a year.

[MountainMom]

Bobh,

Thanks for your insights. I was feeling pretty disheartened after reading that and the most recent, big survey from pandas parents network (in which it seemed that puberty doesn’t make a difference for most kids). Good to hear that for some it has. I was starting to think that was just a rumor. Since starting treatment we had three good months followed by five months of flaring. We are still in it. Just in need of some hope....

[bobh]

I am not recalling that conclusion (that puberty doesn't seem to make a difference) from the survey - I better re-read it.  Just to be make sure, it is one that involved Dr. Murphy, and had 600+ respondents?

[MountainMom]

bobh,

Here is the link to the survey. I think it had about 1,400 respondents. It is interesting to look at, though, I think they presented some of the information in a misleading format. For example, when they figured out the percentages regrading the success of different medical interventions, they included the N/A numbers in the percentages. Thus, it appears that some treatments (especially those less commonly used, like IVIG) are less effective than they really are.  

Let me know what you think. I think page 15 has the results of puberty and remittance of symptoms....

[bobh]

Oh, this is not the survey that I thought you meant.  The other one was smaller, but published formally in a peer-reviewed journal.  Thanks for pointing it out - sorry I took so long to get back here.

I see the results on page 15.  I still think that there is a significant issue with selection bias.  The people whose kids got better with puberty years ago are very likely not included in the right proportion in this survey, simply because most have moved on, and are no longer in these groups (and that explains why it took me so long to get back here!).  The ones that are still struggling with post-puberty kids are still here, and much more likely to be responding to the survey.

This kind of survey should have some interpretation/discussion around it.  In some cases, you can answer more than one answer to a question, so the percentages calculated are also not really right.

The ~60% male and ~40% female has been shown in other surveys as well, so it sounds like a fairly reliable number.

[ABdualPT]

I do believe that you need to treat with IVIG in order to eradicate PANDAS. If you look at the Guidelines for the Treatment of PANDAS published in 2017 by Swedo and colleagues, it outlines that IVIG should be used for successful treatment. Sometimes 2 courses of IVIG are needed if you read the 2015 study published by Swedo, Kovasevic and someone else that I can’t remember 

[MountainMom]

abdualpt, this is what I found when I checked the 2017 guidelines:

I interpreted to mean that in extreme cases, IVIG is helpful, not that it is necessary to recovery. Am I misreading? Can you tell me where you found the info that you cited?

Thanks so much. Just trying to figure out what our next steps should be.

[ABdualPT]

If you google “liebertpub.com”  you. Will come to an article entitled, “Clinical Management of Pediatric Acute-Onset Neuropsychiatric Stndrome: Part II- Use of Immunomodulatory Therapies.” If you view the article as a PDF, recommendations are on page 578 and more info on course of care on page580

[Bttrfly1]

What are you doing to help get rid of a flare? We are truly in our first flare since doing IVIG a year ago. We started Motrin..

[lulu4]

Bttrfly1, when my dd had a flare long after IVIg, we did use ibuprofen but also Dr. gave antibiotics course. Helped within a day or two.

moutainmom, in answer to your question at the top of this post, I believe IVIg saved my daughter's life. Her recovery took a while, but she is living a normal life now. She just graduated from high school at the top of her class. I'm so thankful for that treatment giving her her life back

I believe you posted on another thread that restricted eating is one of the symptoms that you deal with? We were fortunate that during that time our dd would drink smoothies, so I was able to put Vega One powder, an all nutrition, not just protein, in one powder, into a drink for her.

And then after the IVIg treatment, one of the first changes was eating habits. Was wonderful to see her interested and will to eat.

 

[Newfie]

Hi Lulu4,

I’m glad your daughter is doing so well.I was wondering if you could give me some advice.My son also has the restrictive eating ,he lost 15 lbs in 6 weeks ,has terrible ocd and tics.I live in Canada and finding treatment here is very difficult.My sons pediatrician and psychiatrist just want to treat him with Prozac and aren’t willing to do anything else for him.The Prozac does seem to be helping but hate the thought of him being on it and possibly long term.I don’t know if I should listen to them or make a trip to the states to see Dr.Latimer.How many ivig treatments did your daughter have? I can’t seem to find any information on whether a child can get better on their own or will not treating this cause permanent damage.That is what scares me the most .I can’t take him off the Prozac because he just regresses right back to not eating and he can’t go through that again.I don’t really know where to turn.Any advice would be appreciated.

[bobh]

Hello newfie (are you living on The Rock, or settled elsewhere?):

Our son did get better without IVIG.  But he had a lot of abx (that helped), a steroid burst (that didn't), ibuprofen (that didn't), some SSRI (very very low dose, that helped dramatically once at that low dose, didn't later) and plenty of supplements.

One thing that scared us about IVIG is, that after going through the expense and trouble, there seems to be the possibility of regression after getting strep again.  At least, there are some stories to that effect (I'm sure if you searched IVIG in this forum, you would find all kinds of experience).

I subscribe to "try low hanging fruit first". That is, simple relatively inexpensive things that might deliver gains of significance.  One of them is ibuprofen (but you can't continue a high dose for a long time - this is just a rescue protocol).  Another that is even lower hanging fruit (because it is so cheap and easy to do, and not harmful at sensible doses) is to have him drink baking soda and water every day.  I didn't try this (our son was better before I heard of it), but I would have had I known, based on the research behind this article: https://www.sciencedaily.com/releases/2018/04/180425093745.htm .  We did try various supplements, and we did find one (phosphatidylcholine) that did help our son (but doesn't help everyone).  With supplements, I would be very careful - some make some kids worse.  Our kid got worse on probiotics, and I have since found that this is not that uncommon among PANS/PANDAS kids.

So there is lots to try even while you book and wait for an IVIG appointment if that is what you want to do.