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jsl25

Neuro ordered 3 days of IV steroids - anyone BTDT?

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I posted recently about my 4yo DD being in what we think is her second PANDAS episode. The first kind of faded on its own with next to no intervention (mostly because I couldn’t find a doctor to help us). I realized last week that Motrin every 12 hours completely eliminates all PANDAS synptoms (tics, aggression, OCD). I brought this up with our neurologist yesterday and he finally paid attention and agreed that this is more than a tic disorder and agreed that this change with Motrin shows brain inflammation. He wants to do three days of an IV steroid. Problem is that he wouldn’t dig any deeper to find the trigger of these episodes. What is causing this inflammation. She tested negative his time around for strep, but positive a year ago. I just don’t see how this steroid treatment will completely eliminate the problem. Has anyone found that it did give long term positive results??  He will not consider antibiotics because he does believe that she has any sort of active infection. 

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I’m the OP of this post, and just wanted to update in case anyone searches this topic down the road that we just finished the 3 days of high dose IV Solumedrol (steroid). My 4yo daughter did great, no big side effects. 

Her mood and behavior has improved TREMENDOUSLY. It’s like I have my old kid back, except for the tics. They are worse than ever. Our neuro said, “That’s surprising, but give it a few more days.”  I’m getting scared that it’s not going to help. I’m so glad to see her behavior and temperament improve, but it’s so distressing to see her tics this bad. 

Many advice from others who may have gone down this road? Is there still hope that the steroids will help?

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Thanks for posting progress.  So sorry that no-one replied to your original post.

Certainly steroids help some, and not others.  You can type steroids in the search box near the top right to read about other folk's experiences.  Make sure that you are in this group before you type into the search box.

Our child is similar to yours, in that we had an initial flare at age 6 that went away on its own after several months.  But then the next one was really severe.  Ours never responded to ibuprofen or steroids, however. At least your neuro recognized the brain inflammation.  They often don't take the time to dig deeper.

If you find that your neuro dismisses PANS or PANDAS, he might be amenable to some convincing if he knows some of the big names that have blazed the path (i.e. Dr. James Leckman).  I typically don't recommend trying to convince a doctor this (much simpler to just get another one), but he might be different on account of his openness with recognizing the brain inflammation.  If you want some more info on Dr. Leckman, let me know.  He is a giant in the field, and was initially on the other side (opposing PANDAS as a real entity), and then he switched sides.

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FYI - My son had a three week steroid taper and completely normalized three weeks after the taper ended.  He did take ibuprofen for a few months and turmeric ongoing to keep the inflammation down after he went off the steriods.  Hope the improvements you have seen stay and that others come in time.

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I've been doing 9 weeks of 1g of IV Solumedral once a week, and it's been miraculous.  (I'm 22, eleven years of PANS, diagnosed at 19.)

I'd relapsed in August or September, I was completely dysfunctional, suicidal, unable to do any school, and just generally a different, totally tormented person.

After three steroid treatments (3 weeks), I was back to baseline.  I've had Lyme and co-infections for almost two years, and this PANS relapse was probably caused by the antibiotics kicking up the inflammation in my body too much.  (It's very unusual to use steroids when someone has Lyme, but my LLMD thought mine was one of the few cases when it was warranted.)

My PANS doc said that the steroids definitely weren't fixing the underlying problem for me, so your instincts about that may be right.  I've heard of some people who did heal after a few weeks or months of IV steroids and then that was it (especially in someone who is younger and hasn't had PANS for years like I have).  But sometimes, I think steroids are just used to alleviate suffering and buy time until you can get more curative treatments. 

It's definitely important to figure out whether or not there is still an underlying infection.  Does your DD still have tonsils/adenoids? Strep can hide in there even on antibiotics. Have you considered testing for Lyme and co-infections with Igenex?  I wish I'd done Igenex much sooner.  I've never tested positive for Strep in all eleven years of my journey, so it's definitely not the only thing to look out for.

As far as tics, for me, the steroids often make them worse for the first day or two, but then after that, they're better than they were before the dose.  I've heard of a lot of people whose tics are worsened by steroids, though, so it's not unusual.  I think it can take a little time for them to knock down the inflammation, so don't give up on it yet!

Edited by dreamingpanda

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This is the OP. I greatly appreciate everyone’s response and input. We are now four days post last infusion and it feels like I have my child back for the first time in a year. Her mood is amazing. She’s so happy and bubbly and not throwing insane tantrums like she was doing. She even looks better in her face and in her eyes. At first her tics were drastically worse and I got really worried, but just yesterday afternoon, they are 90% gone. It’s a miracle. I’m knocking on wood as I write this. I don’t know what to expect for the future or for long-term, but it’s so wonderful to have her back right now. She’s only 4yo and I believe this all only started one year ago. So I’m optimistic (perhaps foolishly so) that we can nip this thing in the bud.

PP who talked about using ibuprofen and turmeric- would you please elaborate? My daughter does amazing on ibupreofen, but I worry about giving it to her for more than 1 week at a time. Also, please guide me on the turmeric. I would be very interested in learning more about using a more natural anti-inflammatory. Where could I get good information on this?

This is still a work in progress and we are still awaiting second opinions.  I want more investigation done about what is causing her flares. Although I’m glad for the neuro we have who was willing to do the steroids and will do IVIG if we need to,  he won’t treat with abx and he won’t further investigate what’s causing this. His theory is that it’s autoimmune and we won’t find an underlying infection.  And because he thinks this is an autoimmune reaction, he doesn’t believe abx are warranted or helpful. Which is why I will seek other opinions on those topics, because I think there is more to it.

Thanks again everyone.

 

 

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My son takes 300 mg turmeric twice daily.  He is a young adult and weighs 140 pounds.  https://www.amazon.com/Solaray-Guaranteed-Potency-Turmeric-VCapsules/dp/B004OU177M/ref=sr_1_1_a_it?ie=UTF8&qid=1512402634&sr=8-1&keywords=turmeric%2Bsolaray&th=1

 

I suspect a very small amount either from your spice bottle or taken from a capsule and stirred into applesauce or used as seasoning on cooked food would be sufficient for a four year old child.    DS did take ibuprofen 3x daily for a month, at one point, but he was 13 at the time.  Now that you have gotten the inflammation down, it is very important to keep it down for a while so any research you can do on natural antiinflammatories would be helpful.

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22 hours ago, jsl25 said:

His theory is that it’s autoimmune and we won’t find an underlying infection.

That is interesting.  I believe that most PANS/PANDAS doctors will believe that the disorder has an autoimmune component, but it all got kicked off by an underlying infection, and is re-kicked and re-started by subsequent infections.  But there is at least one doctor (Dr. K. in Chicago) that has said that in the tough cases, abx fails in the end.

So, if this doctor is willing to help, and believes only steroids or IVIG will do the trick, why not go for the IVIG (if you are covered/can afford it)?  It might be a semi-permanent cure (longer term than the steroids).  Those PANS/PANDAS patients that have done IVIG sometimes have it all spoiled by a subsequent infection, so while you have the IVIG getting lined up, can you still chase the idea of getting a prophylactic abx with another doctor?

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Dear OP, could you please kindly share what dose of Solumedrol your DD received? My DD just turned 5. We are waiting for our high dose Solumedrol and IVIG insurance request... very scared (and also very hopeful). 

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Hi YBB, 

I’m reading off of the sheet our doctor gave us, and it says 500mg IV for 3 days. She weighs about 20kg (41lbs). I was very scared too, but the Solumedrol ended up being no big deal. The hardest part was putting in the IV on the first day, but that was only about 2 mins of drama, then she was fine. Really, we had next to no side effects. Just really sleepy at night, which was opposite of what they warned us about. And a little flushing about an hour after receiving the meds. My daughter was perfectly happy sitting in the bed eating snacks and watching movies and coloring.  I’m more scared about whether this will actually have good lasting effects or if we’ll need to move on to IVIG. 

Shes being treated at AI DuPont in Wilmington, DE. We’re outside of Philly. Please feel free to private message me if you want to talk further. Good luck. 

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