New study implying that IVIg isn't much good?

[Wombat140]

There's a new study by Susan Swedo, suggesting that IVIg doesn't work very well, or something like that.  What do people think?  I know some people on here have observed that it seems to work for their child.  Our doctor seems to have possibly changed his mind and is saying that he doesn't think there's any point in recommending me for IVIg after all.  I don't know whether it has anything to do with the study or not.

Also, he wants to put me on antibiotics for a month (didn't specify what antibiotics) and seemed to be implying that if we didn't see any effects from that, then it probably wasn't PANS.  Is this really correct, in an adult who's had the symptoms for 15 years?

[TSH_73]

Hi - that's interesting about the IVIG. I don't have any experience with that treatment so I am not sure. But as for the antibiotics, I would say that you may see some improvement on antibiotics within a month, but it may also take longer than that to notice much. I am 25 and have had PANDAS for 19 years and only figured it out last year (was diagnosed with rheumatic fever a long time ago but not PANDAS), and I was prescribed Bactrim last year for one month. I did notice some improvement, but it was very gradual and at the time I couldn't even fully tell if it was doing anything. And I also couldn't tell if it was from the antibiotics or something else. But I know the antibiotics were working because the second time I got on antibiotics for longer than a month the symptoms definitely started to fade. As a side note I have tick borne infections as well so that definitely complicates things. 

[jan251]

I don't see any new Swedo study.  There was one a few years ago that was controversial due to the study design and everyone was irritated because it clouded the issue.  See these older discussions:  

 

[Wombat140]

Sorry for the delayed reply.  I've done a little looking up and rather than the 2015 study with Dr K mentioned by Albymom, I think this may be the one my mum had in mind: Randomized, Controlled Trial of Intravenous Immunoglobulin for Pediatric Autoimmune Neuropsychiatric Disorders Associated With Streptococcal Infections (Williams, Swedo et al., 2016).  The gist doesn't, in fact, seem to be that it didn't work, but rather that there was quite a decent improvement (average 24% improvement versus 12% on placebo) but the difference between IVIg and placebo wasn't statistically significant with the small sample size (35 patients).  They also drop intriguing hints, saying that they'd like to try to develop tests for who would respond to IVIg, implying that some responded much better than others.

Pity there isn't a full-text version availiable, I'd have liked to see more details of what they meant by quite a lot of things - and also what the pattern of individual responses was, not just the average: was it really just a small effect for all the patients, or was it that some had a large improvement and others none (because they didn't have whatever underlying immune status the IVIg is supposed to be repairing)?

[ejh]

The sample size in the Swedo study does seem small, and there do seem to be kids who respond week and kids who don’t. My son had one IVIG at age 12 (had PANDAS probably since he was very little), diagnosed at age 12, antibiotics, steroids, tonsils removed, none of these things helped, then IVIG and about three months later he seemed much better, and six months later I realized I had not worried about him for a long time. So for him IVIG clearly did work, and no improvement with antibiotics did not mean it was not PANDAS. I would be skeptical of the idea that if a month of antibiotics doesn’t work it is not PANS. If that were the case it would be simple and none of these kids would ever need IVIG.

[4Nikki]

So my understanding is that pandas is a autoimmune illness and it doesn’t work right. Somehow the antibodies get the wrong signal an get sent to do the wrong thing in the body. I thought I understood that IVIG process is to puts good cells in the body That will do the right things but will eventually be used up as time goes by. And the whole intention is to get symptom relief. If you have a child that is raging, it can be unmanageable. If this is what happens then, I’d say it should be said as IVIG works. If your intend is to cure Pandas, then I’d say it doesn’t work.

We never had IVIG, steroid blasts gave us that relief. I had originally thought that the steroids were use to reduce the inflammation and maybe it’s part of what happens but the doctor said it’s more that is reset the autoimmune system. It worked twice. When doctors found the underlying cause to be the mitochondrial system and started support for that, it brought the symptom scale from 1-10: 10 down to 1-3. Which is a major difference. Antibiotics also worked immediately for us but since our child wasn’t initially diagnosed with pandas, we never did them long term.

[Kimflow]

4Nikki, 

Can you share what they found regarding mitochondria and was it just a target mito support that relieved symptoms?  You are saying that the autoimmunity was reversed by mitosupport?

[4Nikki]

Oh Gosh, I have to look it up in the summary. It’s a blood test the doc did and she gave us a summary of the mitochondrial system and said that Dd’s Cells were deficient. The doc also did a mito swab test to check the function of how they are doing. Now this is where I got lost last visit to the doc because DW is a nurse and is usually the one to take notes and explain the stuff over my head, but she was upset with me and wasn’t at the last visit. DD is going for a series of treatments 4 of 10 are at the doctors office and the rest are at home. This is not the IVIG but something to do with gcMAF. I’ve got a little unstanding at a high level of what’s going on but get into the lower level of the details and things get over my head. I don’t get some of the terminology they talk about DW has to explain it more when we get home. Doc does a pretty good job of dumbing it down for me but I get information overload. There’s a lot of good vids on YouTube that explain the mitochondrial system and what can be done to help it out when it’s not working right.

[4Nikki]

So the gcmaf treatment is to boost the micro(somethings) that help the little Pac-Mans eat the Nagalase which goes up in count when viruses, bacteria or things like cancer are going on. Basically it’s to help the immune system work better.