steroid taper negative reactions?

[AmberM]

We're on day 2 of a 30 day prednisone taper and my dd woke up in a horrible mood. I dropped her off at preschool and she continued to rage. I called her pediatrician to see if this was ok and he told me to push through for 3 more days and if things don't get better..... drop the dose in half. We were expecting to see her reflux exacerbate so I have meds on board for that but I'm not sure if this is what I'm seeing. I was hoping someone could chime in with advice? Is this a pretty common reaction? I'm guessing it is hence the term "roid rage". Does this mean she won't be a candidate for IVIG? I really have my hopes up for progress and I'm already feeling crushed which I know is ridiculous.

thanks,

Amber

[Phasmid]

I can only respond from our own experience. Generally, steroid makes you feel pretty good. My son improved mood-wise while on the taper this past summer.

 

However, when he had an active infection (he was treated for allergies rather than for the infection that he had and we didn't know then), probably strep due to pharyngitis, sinusitis, and was given Prednisolone, a liquid oral prednisone for redusing the inflammation in his throat and sinuses, that is when we lost him. We believe what happened was that he had undiagnosed strep, and then the pred. knocked down his immune system. This allowed the infection to run rampant.

 

During the past summer, when he was treated for the "leftover" PANDAS symptoms (mild ocd, mood), he became very calm, cooperative, and more focused while on 30 day taper. The dose was started at 40 g. and he weighed 130 lb. It was tapered down by 10 mg. each week.

 

I may get scolded for saying this, but I don't know how scientific the notion of using the the response to pred. to determine probable IVIg outcome is. I realize Dr. K. has clinical experience to make this statement. All I'm saying is I don't know if this is carved in stone or not. Sure, it makes sense, that if you reduce inflammation, etc., by stopping an autoimmune process using pred., then IVIg would work. However, the process by which IVIg treats the PANDAS symptoms ISN'T EVEN ENTIRELY UNDERSTOOD YET. So, to say that if a child fails on prednisone he/she will fail with IVIg ... I just don't know if this is sound or not.

[Kayanne]

Both times that my daughter took pred the first week was rough. Definitely more rages and anger. By the second week (dose cut in half) things started to calm down.

[kimballot]

My son went crazy the first 4 days of his steroid burst. He is 13 and verbal. He was very itchy and had increased joint pain. This happened with the last steroid burst as well. The pediatrician (who did not prescribe the steroids) encouraged us to wait it out for a few days while he was on the loading dose and I am glad we did. Our pediatrician apparently had some experience taking prednisone as a patient and said he always felt like his skin was crawling while he was loading. Once his body got used to it he was fine.

 

I gave benedryl during the first few days and let him stay home from school. Both seemed to helped. My son started to do better around day 5 and by the end of the first week he was fine and said the pills made him feel good after he took them. The prednisone gave him about 1 month of PANDAS relief. We believe his infection had been cleared prior to that but he had sinus inflammation. This week he just started to complain of a sore throat and "not feeling good" -though no where near as bad as he was before prednisone.

[Guest fr88]

The way things were explained to me when I was 10 was like this. "Steroids blow up the bad antibodies, so it's like there's an explosion in your body." "Once all the explosion is gone, you'll start to feel better." So I guess think of an exacerbation due to steroids along the lines of blowing up antibodies.

[Stephanie2]

Amber, we have kids the same age and diagnoses...haven't "talked" in awhile!! Anyway, I just did a steroid burst on my little one (2, almost 3) and he was a little irritable, but you have to observe very closely and see if the irritability is pandas-like (meaning ocd-ish, or just that same pandas emotional lability) or if it is more depression-like. Hard to explain. But it is a different type of behavior with the steroids as it is with pandas. For my 2yo it was less "fixation" and more just fussy.

 

Now for my 6yo, the irritability is much worse (he is on day 6 of a 25 day taper), not ragey, but lots of dramatic crying. It was similar, but different than the pandas meltdowns. There was a little anger tied in (pounding fist on table when not getting his way). The other thing I want to mention is that I started some 5htp, knowing it was depression related to the steroids, and it helped dramatically. For him I am doing 75mg at night. For my younger one I was told that it is safe to do 50-100mg at night (although I didn't need to).

 

Also, I know you, too, struggle with clostridia. The bad news is that on day 6 for my 6yo I think I am seeing an upsurge of clostridia symptoms...wait for it...WHILE ON VANCO!!!! Bad enough that I had to give ativan today after school. You make a compromise when you start steroids b/c you are almost guaranteed to pay with the gut. But in our case, I knew that going in and I do not regret it b/c I could see that we were going to have to line up IVIG if I did not do this. Not covered for us...

 

We are on the second day off the 3-day burst for my 2yo and he is still holding, but I am doing a motrin protocol to prevent the rebound of symptoms that he has had in the past. Tomorrow is the last day of motrin and I am praying that he holds steady. Otherwise I guess I will have to do a taper with him as well.

 

In a nutshell, make sure you are very details with your notes during this taper. Make a note of specifically what symptoms are disappearing and which ones are appearing. If the typical pandas symptoms are going away (even if the gut is going to ###### in a handbasket) then you can rest assured that you did the right thing and all is not lost...keep us updated!

[butterflymom]

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Edited February 3, 2016 by tampicc

[tantrums]

I'm sorry you're having such a hard time. I remember that disappointment. My son has been known as "steroid boy" since he was a toddler. He had chronic croup and was on orapred up to 10 times a year for a few years. It was really really bad!

 

I had hoped he would do better since the croup is no longer an issue. He was not. It was terrible! I was so disheartened.

 

BUT - I was told that could just be him, a normal reaction that he will always have to steroids since we have seen it in the past.

 

It doesn't necessarily exclude IVIG. I had written IVIG off at that point due to his reaction and the insurance denial. But now my son has had serum sickness from two different classes of antibiotics and I have 6 doctors saying the only option we have is IVIG. Case manager from the insurance company also agrees and is working on approval for us.

 

Have you ever taken steroids? I did a couple of times in the past three years. They DO make you feel just terrible!! I was ready to start throwing furnature!

[AmberM]

Thanks for all the support from everyone. It sounds like we just need to push through this first week or so. We've been through some pretty bad times but never like this. I can tell that dd has absolutely no control over her raging...... it's heartbreaking.