My world is blowing up!

[Stephanie2]

OK, I have had quite a day and at this point may not even be able to coherently convey what I need from you ladies!! LOL!

 

Thank you for all of your support. I am trying to make sense of what is going on. Can you just tell me about your experiences with the steroids?

 

I can say this for sure, pandas is on the way out with this taper, so this ragey stuff that I mentioned in my last post is definitley not pandas. But it is pure psychosis, he has been having this reoccuring rage over the fact that he wants me to put my 2yo in jail. If I fight him on it he will rage for an hour. If I go along with it (meaning, say "ok, we will send ds2 to jail...we'll leave in a few minutes"), he calms down for a little while. Then he starts up again b/c we haven't called the cops yet and we haven't put him in jail yet. He actually called 911 when I was out of the room! I grabbed the phone and explained what was happening, I'm surprised they didn't show up at our door. When I hold him back from beating his brother he rages, when I hold him back from calling 911 he rages. This starts at 6 am and goes until he falls asleep at night, with a few lulls in between (thank God for those).

 

When I describe this, does this sound like pure steroid side-effects? I mean I know it sounds obvious, like what else could it be? But it is very similar, but not identical, to when he gets klebsiella. But the kicker is that he is taking an antibiotic for klebsiella as we speak. So then I wonder if we have kicked up another bacteria (wouldn't be clostridia b/c he is taking vancomycin as well). I gave him activated charcoal and the first time it did seem to kick in and the second time it didn't. I know I am speaking a foreign language to some of you, sorry, it's so complicated in my house.

 

Anyway, I was advised by my biomed doc to speed up the taper to get him off the steroid quicker. What are everyone's thoughts on that? I am one who likes to bite the bullet and do what is best long-term, which inclines me to not want to speed up the taper. Stick with it and get the maximum efficacy I can from it in terms of pandas. But I feel like our current situation is going to break dh, break me, etc. If the steriod has screwed up the gut (kicked up pathogens) then to me the damage is already done so why not just go full force with the steroid, kick pandas in the butt, then worry about cleaning up the gut later?

 

I guess what I mainly want to know is, can a steroid really cause psychosis to this extent? I thought it only causes irritability/depression (which yes I am seeing along with all this).

[Phasmid]

Phew... can't help but just wanted to say sorry to hear. And I thought I was having a bad day...

[thereishope]

First, I'm sorry you're going through this! Second, can you break down everything you're giving including what antibiotic he is on? Maybe a timeline on your dosing for the day would help.

[LNN]

Stephanie,

I am so sorry. I can only imagine how you're holding on by a thread. I know your house is complicated and I think you're dealing with so many layers, I wouldn't even begin to offer an opinion on what is due to steroids or anything else. I'm afraid you're going to have to go with your gut on what pace to take.

 

But I will remind you of some things I'm sure you already know ...

First - document. Weeks from now, you may want to look back and try to dissect. So keep a note pad on your counter, journal by the hour, or set up the video camera in the corner, or a tape recording. Do an excel chart at night. Whatever is practical. But since you are likely dealing with a co-morbidity of things, having something to look back to will help when calmer minds return.

 

Second - try Cognitive Behavior Therapy for the rages. You need a coping tool and CBT worked wonders for my son when he was 6. One day in the middle of a severe meltdown, I said, in a commanding but not yelling voice "Edgar! You let DJ go!" Now, my son's name is not Edgar. So my son stopped his rage for a moment, wondering if I had gone mad. Not wanting to break the spell, I said again "Edgar the Angry, DJ does not want to feel this way. He hates that you're making him hide under the coffee table and scream. He DOES NOT want to feel this way and you let him go NOW!" almost like I was in the movie the Exorcist and I was one of the priests sprinkling holy water. Then I sat down on the floor about 2 feet from my son and held out my arms. He inched a little closer but was afraid of me. So I sat still, with my arms out and in a soft voice I said "It's ok, Edgar the Angry is gone." and my son crawled into my arms and bawled.

 

From then on, when a rage started, I addressed Edgar. I didn't try to reason with my son. I only did everything I could to firmly tell Edgar he needed to leave our house. You could say something like "Edgar, I know you're trying to trick DS. But he does not want to do what you're telling him. I know you are mean and are making DS feel horrible. You just want all of DS's attention. But I am here to keep DS safe and I will keep my whole family safe. Now stop." The goal is to depersonalize the rage and let your son know it's not him you're upset with. You also make it clear that Edgar is not going to get his way, you're not falling for his tricks and DS2 is not going to jail. You, the mom, will keep everyone safe. Edgar is the enemy and you are going to help your son fight Edgar and win.

 

Later, in calmer times, you can talk about making DS the boss of Edgar and using CBT/ERP tools you can both use when a rage starts. But for the moment, try something like making the rage into a 3rd person so you and your son can get on the same team to fight the horrible feelings. He must be terrified inside and this might help him reach out.

[dabel]

I know of two people whose kids reacted very poorly to the steroids. It did cause their kids to go in to a psychotic state. The one child kept repeating "Packers Suck" for a week straight. He said nothing else and was absolutely checked out. He came around after the steroid was stopped. And FYI - I am from Wisconsin and the Packers DO NOT suck!!!

[SarahJane]

First off, I'm sorry. We did see rages from ds during steroids (we did just 5 days tho)...our relief with them was actually a only a few days without rages. I didn't keep a journal during ds's last exacerbation as part of me didn't want to keep track of the minute details, so I can't give specifics. But we gave the steroids to stop the rages & got rages & then got relief for a few days & then rages again, which then mostly went away just before IVIG but were back when we went to Chicago. This was over about a 4 week period of time (took us a little while after dx to find a dr who would write the px for the steroids). And it could just still be the brain inflammation since steroids take a while to kick in for the immune suppression effect. We don't deal with gut issues, so I don't have anything for ya there. Could you be seeing some sort of reaction to the abx itself?

 

Is your little one sick or could he be sick? Could your 6-yr-old be feeling a reaction taking place in his body due to exposure? I ask this because this is what I suspect (can't prove) was happening with my son last year in school. I think the boy he had the most issues with in his class was possibly a strep carrier or at the very least, he got strep A LOT. So, I think that my son had a physical (& mental when you consider PANDAS) reaction to this kid. I believe that's what led partly to the boys not getting along. That's my theory anyway. I figure when our kids are having issues with us it could be that we're invisibly fighting off something that we don't even know because our immune system is working/doing its job, but our kids are reacting to it when their immune system is triggered.

 

I hope some others on here can give you great advice. Good luck and quick healing.

[Stephanie2]

First, I'm sorry you're going through this! Second, can you break down everything you're giving including what antibiotic he is on? Maybe a timeline on your dosing for the day would help.

 

I'll come back to this...too tired to think!

 

 

Second - try Cognitive Behavior Therapy for the rages. You need a coping tool and CBT worked wonders for my son when he was 6. One day in the middle of a severe meltdown, I said, in a commanding but not yelling voice "Edgar! You let DJ go!" Now, my son's name is not Edgar. So my son stopped his rage for a moment, wondering if I had gone mad. Not wanting to break the spell, I said again "Edgar the Angry, DJ does not want to feel this way. He hates that you're making him hide under the coffee table and scream. He DOES NOT want to feel this way and you let him go NOW!" almost like I was in the movie the Exorcist and I was one of the priests sprinkling holy water. Then I sat down on the floor about 2 feet from my son and held out my arms. He inched a little closer but was afraid of me. So I sat still, with my arms out and in a soft voice I said "It's ok, Edgar the Angry is gone." and my son crawled into my arms and bawled.

 

OK, with this story first I was laughing, picturing your son looking at you like you had lost it! Then I was crying (I'm all over the place today) when you said your son crawled into your arms and bawled. I have been there and it is heartbreaking to see the helplessness they feel.

 

 

I know of two people whose kids reacted very poorly to the steroids. It did cause their kids to go in to a psychotic state. The one child kept repeating "Packers Suck" for a week straight. He said nothing else and was absolutely checked out. He came around after the steroid was stopped. And FYI - I am from Wisconsin and the Packers DO NOT suck!!!

 

laughing again! LOL!

[KaraM]

HI Stephani,

 

My heart is aching for you and your children. I wish I had some sound advice for you about the steroids or other meds - but I think you actually know way more than I do.

 

But I was wondering if, to take some pressure off of you, there is anyone you know and trust who can take your 2 year old for a couple of days. I know I hate it when my son is exposed to my daughter's rages. I also know having one less person to take care of can make things a bit easier (and my son is 11!). Plus, that may give time for the steroid to do what it needs to do and for you to get through the taper.

 

Just a thought....I also know it can be hard to leave a 2 year old with someone else....

 

I'll be thinking of you.

 

Kara

[browneyesmom]

Oh gosh, Stephanie... thought I just read things were a little better today. Now I'm so tired I'm not sure which you posted first. I wish I could offer some info on the meds, but just do not know enough about that with the co-existing conditions. I'm so sorry things are so difficult lately. I hope you'll be able to get some rest.