handling behavior

[dasu]

We have two kids who have PANDAS and are flaring now. They go through periods of really wild behavior primariy focused on talk about private parts, pooping&peeing, fat or ugly people etc. Sometimes this also graduates into more aggressive or violent talk and actions. We have discovered that its best to separate them in this as together they become self reinforcing. But behond that we are stuck. We cant go out anywhere because they point at peoples privates and make comments and we cant seoerate them because of fears,the whole family must be together. We ha e noted that no discipline or rational thoughts works during these times. Stress seems to provoke this. Stress may include us reminding them that behavior is inappropriate. After some time they get out the ugliness and usually want quiet. At that point other methods like the Howard Glasser stuff can work.

 

My question then is what do we do to calm then in those brief periods where their minds are out of control? Are there any suggested methkds to calm them or relieve intrusive thoughts and actions? Or do we just need to wait it out? Most times after an hour or so it subsides. But there are still behaviors we can't allow as they are unsafe - we can endure talking about frightful monsters that live in there rears, but can't permit them to fight, run wild around the house etc.

Edited December 7, 2014 by dasu

[Mayzoo]

I would suggest trying Japanese knotweed and/or ibuprofen and one or more of the following (depending on severity and response): benadryl, melissa lemon balm, or valerian. The first is for inflammation causing the issues, and the second is to relieve some of the stress and reduce the behaviours. Hopefully that will be enough.

Edited December 7, 2014 by mayzoo

[pr40]

I agree with Mayzoo's suggestions.

I think you also suggest that you do have a solution already, namely to separate them.

for our children, keeping them in a room to "calm down" for about 15 minutes usually changes everything.

If you are asking what to do when you go out, i am afraid, there isn't much you can do. you could give them what Mayzoo mentions but even that requires time to work.

if your kids are young now, it is possible that this symptom will be more manageable when they get older

[dasu]

We tried valerian on my daughter which also seemed to make her more irritable. But I have not heard of lemon balm I will order that.

 

I work from home but am taking a FMLA leave to help out, they often need man-to-man coverage. The iPads have been wonderful between games and movies.

 

They are scheduled for IVIG in the near future.

Edited December 8, 2014 by dasu

[SSS]

Things are better here, but we had a wild episode a few days ago (just started Doxy for the first time, and it is actually going well, except the scene I'm about to describe)

anyway, boom! PANS kid is out of control- little sis, Dad and me cannot get through, exasperated, escalate. I'll spare you details, but it's awful, verbal, going after little sis, etc. Everyone is angry, but I find clarity and in a very gentle compassionate voice I say, I am so so sorry you're having a hard time right now. I'm so sorry it's hard for you. Then in same soft begging voice I bribe: please, please take this Advil right now, come back with me for your epsom salt bath (given in master jetted tub) and I'll give you a big marshmallow. Come on, just come with me. Please.

She yells no and some other insults for just a few seconds, but she knows. I broke through. She doesn't want to be touched, but the marshmellows I never let her have, the way out, she takes. Advil, the epsom salt bath, drink with Burbur drops on the side, time alone quiet with me, deflates it.

I understand man to man coverage. Hang in there- are you treating infections, and upcoming IVIG should help, too---

[dasu]

We are late to the non-strep infection party. I know, I should have got on board earlier. Found another pediatrician and are checking for Lyme and co-infections, mycoplasma and doing another EBV check. The whole family got mono back in December 2012, so need to check that.

 

So far the only thing that we have learned is the mycoplasma for daughter was 1.3 slightly out of range and the protein ratio was off.