another prednisone question

[EAMom]

Hi Asaxon,

how much does your dd weigh? Those sound like pretty big pred doses...maybe that is the trick vs. 1mg/kg for 5 days (what we got). And what SSRI is she on? Antibiotics? Are you thinking of IVIG or PEX?

[Guest asaxon]

Hi Asaxon,

how much does your dd weigh? Those sound like pretty big pred doses...maybe that is the trick vs. 1mg/kg for 5 days (what we got). And what SSRI is she on? Antibiotics? Are you thinking of IVIG or PEX?

 

She got 2 mg/kg/day, which I believe is the maximum recommended pediatric dose generally, for the first three weeks. The initial prescription was 2 mg/kg/day for two weeks, but when she started showing major improvement at the end of the second week, we asked the Dr to continue the full dose for an additional week--I thought it would give it a better chance of "sticking" (I've learned that with PANDAS, my guess is often at least as good as a doctor's!). Also, I had read that 2 mg/kg/day for four weeks is the dosage that they give for acute Sydenham's Chorea, which seems to be the closest thing to PANDAS (per Swedo's theory of PANDAS) that has an studied protocol for prednisone treatment, so I figured that three weeks of the high dose would be reasonably safe. See http://linkinghub.elsevier.com/retrieve/pi...887899405005436, where Sydenham's Chorea patients got 2 mg/kg/day for four weeks, and were then tapered down, with no serious side effects reported.

 

She is also on Zoloft and penicillin. We are not considering PEX under any circumstances--there is a substantial risk of a serious infection and other complications, and I am certain that the five-day, invasive procedure would be traumatic for our child (not to mention for her parents). If her symptoms return, we would consider IVIG, but we would probably try another round of steroids first, perhaps at a lower initial dose.

[peglem]

Hi Asaxon,

how much does your dd weigh? Those sound like pretty big pred doses...maybe that is the trick vs. 1mg/kg for 5 days (what we got). And what SSRI is she on? Antibiotics? Are you thinking of IVIG or PEX?

 

She got 2 mg/kg/day, which I believe is the maximum recommended pediatric dose generally, for the first three weeks. That is apparently the dosage that they give for acute Sydenham's Chorea, which seems to be the closest thing to PANDAS (per Swedo's theory of PANDAS) that has an established treatment protocol. See http://linkinghub.elsevier.com/retrieve/pi...887899405005436, where SC subjects got 2 mg/kg/day for four weeks, and were then tapered down.

 

She is also on Zoloft and penicillin. We are not considering PEX under any circumstances--there is a substantial risk of a serious infection and other complications, and I am certain that the five-day, invasive the procedure would be traumatic for our child (not to mention for her parents). If her symptoms return, we would consider IVIG, but we would probably try another round of steroids first.

That's interesting. I watched the video of a presentation that Swedo gave at a DAN conference...she talked about her PEX/IVIG study. She said both procedures are "a big deal" and thought they should be reserved for cases that can't be resolved in other ways. But seemed to think (from her own experiences with this study) that of the 2, PEX was safer, and the results more immediate. She talks about the PEX kids being completely back to baseline w/in the week that they were in the hospital. A few of her IVIG subjects (I seem to remember 3) contracted hepatitis C from the IVIG- this was in the '90s, I think, so they may do a better job of keeping the stuff clean now. I'm trying to avoid both of those options, too.

[Guest asaxon]

That's interesting. I watched the video of a presentation that Swedo gave at a DAN conference...she talked about her PEX/IVIG study. She said both procedures are "a big deal" and thought they should be reserved for cases that can't be resolved in other ways. But seemed to think (from her own experiences with this study) that of the 2, PEX was safer, and the results more immediate. She talks about the PEX kids being completely back to baseline w/in the week that they were in the hospital. A few of her IVIG subjects (I seem to remember 3) contracted hepatitis C from the IVIG- this was in the '90s, I think, so they may do a better job of keeping the stuff clean now. I'm trying to avoid both of those options, too.

I believe that Swedo only followed the kids in her study for a year. My thinking is that if PEX works by removing the offending antibodies, then sooner or later the body will be triggered into making more of them; but if IVIG works the way they think (by somehow resetting the body's immune cells), then IVIG would be the longer-lasting treatment. (Again, my guess is probably as good as theirs!)

[peglem]

That's interesting. I watched the video of a presentation that Swedo gave at a DAN conference...she talked about her PEX/IVIG study. She said both procedures are "a big deal" and thought they should be reserved for cases that can't be resolved in other ways. But seemed to think (from her own experiences with this study) that of the 2, PEX was safer, and the results more immediate. She talks about the PEX kids being completely back to baseline w/in the week that they were in the hospital. A few of her IVIG subjects (I seem to remember 3) contracted hepatitis C from the IVIG- this was in the '90s, I think, so they may do a better job of keeping the stuff clean now. I'm trying to avoid both of those options, too.

I believe that Swedo only followed the kids in her study for a year. My thinking is that if PEX works by removing the offending antibodies, then sooner or later the body will be triggered into making more of them; but if IVIG works the way they think (by somehow resetting the body's immune cells), then IVIG would be the longer-lasting treatment. (Again, my guess is probably as good as theirs!)

Yes, she followed them for a year...but had 1 (as I remember it) from each group who relapsed. Also, she explained that IVIG, esesntially does the same thing as PEX, just in a different way: The IgG administered through IVIG removes the host's antibodies (because IgG from a nonhost would recognise the host antibodies as foreign). At least that's what I understood. I'm not recommending one over the other-they both sound plenty scary to me!

[dcmom]

While I am certainly not advocating any treatment (I am struggling to figure this out just like everyone else), I do want to make a few points.

 

We saw the doctors at Georgetown. They have been doing pex routinely for a long time. The main "risk" with pex is that they have to insert a central line. (risk of infection, risk of clotting) The doctors explained to me, that with healthy children (which ours are compared with others that have this procedure) all risks are minimized. The main risk of infection increases dramatically after 5 days, so they make sure they have the line out in advance of that. When Swedo did the original study, the kids were there longer. However, I don't think she had any issues with pex. It has been the gold standard for some neurological disorders for a long time, according to our doctor.

 

IVIG is administered through a normal IV- so you don't have the risk of a central line. It is a blood product (which is thoroughly screened and treated), so there is a very small inherent risk of disease transmission. This happened with 2 of Swedo's patients. I believe (maybe someone who has been through it can comment) there haven't been issues with disease transmission in many years. There can be some discomfort (flu like symptoms) and/ or allergic reaction to IVIG. Both can be monitored and minimized. Many patients recieve IVIG monthly for other medical issues.

 

I guess we all have to weigh risk/benefit, how sick our children are, and what we have access to. I just don't want to really scare people from looking at these options, if it is needed. These procedures are considered a big deal when associated with pandas because most doctors don't believe in pandas, or are not interested in treating it, and because it can be hard to get insurance covg- and costs are prohibitive.

 

I also have concern about high dose antibiotics, and frequently treating with steroids. This is another option for managing care. Although, in some ways it seems more benign- I wonder about longer term consequences.

 

The decisions here are tough, and I think all options should be explored. Maybe our kids will provide the answers for future generations.

[EAMom]

Asaxon....Have you thought about using something stronger than penicillin? And, a higher strength than the prophhylactic dose. Every kid is different but it seems like a lot end up going for something stronger than pen (or amoxicillin). Also dh was reading a paper that said that kids still get strep on pen prophylaxis (I'll post it if I can find it).

 

Here's my blurb on the Swedo Pex/ivig study: http://www.latitudes.org/forums/index.php?...art=#entry38864

 

I do think Swedo is very headshy from her experience with IVIG b/c a couple of kids from her SC study got hepatitis. That was in the late 90's (I believe) when there was some issues w/ IVIG. I don't believe there has been a problem since 2000, since stricter controls were put in place. That said, no treatment (even SSRI's with their black box warnings!) is completely risk free...there are always unknowns.

[Kayanne]

asaxon,

I'm curious as to the dosages that you used. How are your child's PANDAS symptoms now? I really hope all is well.

 

40 mg/day for three weeks, then 20 mg/day for 10 days, then 5 mg/day for 10 days. My daughter is doing great, thank you, starting at around the second week of the prednisone. Still some minor OCD and anxiety, but a 95% improvement from before. We cannot be entirely sure it was the prednisone that did the trick, though, since the improvement also coincided with the 10th week of SSRI treatment (they say that SSRI's can take up to 12 weeks to have an effect on OCD). But the improvement was quite dramatic, so I tend to credit the prednisone.

 

When our dd finished with the prednisone, she did still have some minor ocd/anxiety and a potty issue....she still continued to improve. My Husband and I believe that not being capable of doing her school work or making her own decisions really made her self esteem take a dive...it just took some weeks for her to feel comfortable again.

[KeithandElizabeth]

My thoughts are that regardless of which treatment you use, (antibiotics only, prednisone, IVIG or PEX) each family needs to figure out the underlying cause of PANDAS. Again, our immunologist says that PANDAS is a symptom and the immune system (at least for us) was the problem.

 

So, I think that each of these treatments can be very successful for a particular child, depending on the Cunningham results, the immunological results, and the behavioral symptoms of the child. I really think that at some time post treatment (whichever treatment you use) every child should have at least an immunological work up again. I wouldn't just walk away from this even if my child seemed 100% fine. My thoughts are that the 20% of Dr. K's patients who have a relapse or did not respond very well to the initial IVIG (I believe that is the percentage) may have needed an additional IVIG treatment. On the bright side, 80% showed almost 100% improvement with no relapses.

 

I spoke with a mom via email the other night whose child came home one day and had pulled out all his hair out of his head due to PANDAS. She did one treatment of IVIG with Dr. K followed by one year only of antibiotics and he has been completely fine for 2 years. We are just not hearing from these people because they do not really need this forum anymore.

 

Okay, I am rambling a bit aloud!

 

Elizabeth