social situations with a flared child

[FallingApart]

Hi there,

 

I feel a bit bad asking this because I know some children are unable to go to school. My child is able to go to school and it seems to be the one place she is successful, although I'm not positive about this since I'm not there.

 

We have been having a pretty rough patch here on and off for a while. This is when I start to wonder if perhaps there is another disorder involved. But I do believe PANDAS is the main issue. DD is 7. I see other posts where some of you are able to actually talk to your children and perhaps the child has a learning experience from your discussion. Our DD is completely unable to take info from a previous situation and apply it to the next, identical challenging situation.

 

Last week, she got so mad at what a playdate child was saying and doing (which in my mind was really nothing) that our PANDAS DD told the playdate that she was going to physically harm her. Playdates or social situations are constantly this way. DD gets mad or wants to dominate the situation. No amount of discussion or role playing has impacted this. You might say "limit or eliminate social interactions" but we do really limit them. I'm talking about Christmas get togethers, school situations, etc.

 

I guess I don't even know what exactly my question is here except for advice on how you handle social situations when your child is flared and is in an ODD state?

 

Thanks so much!

[Agnes26]

My daughter is recovering and does go to school. Occasionally, she will flare in social situations. I'm pretty sure it's because there's a strep carrier present. It seems to happen around the same people. She becomes hypermotoric, nonsensical and sometimes emotionally irrational/angry. There is no teaching her how to handle this because I truly believe she is out of her mind when this is happening. It stops soon after we remove her from the situation. Not sure if this is what's happening with your child, but perhaps keep tabs on whose around and see if there are any patterns to when the behavior happens.

[FallingApart]

I completely agree with the "out of her mind" comment. Thank you for saying that. We have certainly identified who we believe to be strep carriers and don't let her interact with those people whenever possible. However, when she is flared, even the families that DH and I have deemed safe will cause her to go "off". Then, her recollection of the incident is completely inaccurate as if she wasn't even there.

[airial95]

I would consider CBT - it can help. We go to Rothman for CBT for both of my kids, and it's been helpful, particularly for my daughter (6) who when not in a flare, is fine and outgoing in social situations, but when flaring is terrified and anxious, often resulting in inappropriate reactions - even at school (not as bad as what you've described though).

 

Even if the therapist isn't PANDAS friendly, they can still offer exercises and suggestions that could help. Remember, you're not seeing them for PANDAS treatment, simply to give your child coping mechanisms to use when they are in a flare.

 

My daughter recently started going to a group session with about 3-4 other girls her age who also have similar social anxieties. She only went to 1 before the holiday vacation, so I don't know how it will go, but she seemed to appreciate that there were others who's "brains get stuck".

 

One last thing, CBT works much better (in our case) when a child isn't in the deep throws of an episode. We still keep our therapy appointments during those times, but until meds/supplements are adjusted for the new infection - it's not as effective.

[pr40]

"Our DD is completely unable to take info from a previous situation and apply it to the next, identical challenging situation."

 

absolutely the same here with dd9. her pandas started a year ago and "learning" did get somewhat better but is still extremely limited.

Another trait is that she cannot see herself through the eyes of others nor can she judge correctly behavior that is her own. When the same is done by her brother (5), she can identify the behavior correctly.

 

this is a daily occurrence for us and I cannot relate it to a flare up.

 

I do think, however, that this is one of her PANDAS symptoms, not something else. We did not see it quite the same way before. You can call it regression.

 

We are seeing a therapist tomorrow for advice.

 

If you figure it out, I would like to hear. thanks

[FallingApart]

pr40,

 

absolutely the same here with dd9. her pandas started a year ago and "learning" did get somewhat better but is still extremely limited.

Another trait is that she cannot see herself through the eyes of others nor can she judge correctly behavior that is her own. When the same is done by her brother (5), she can identify the behavior correctly.

 

this is a daily occurrence for us and I cannot relate it to a flare up.

 

 

I guess that I agree it is a daily occurrence for our DD as well. But how do you deal with social situations when you have that to deal with. Our DD appears to the rest of the world to be a fully functioning person. Yet, with this as her burden, she clearly isn't.

[cobbiemommy]

We have the same problem with DS, 13. We have had this since he was 4. It got better with the first Ivig, but not so much since then. We still have not managed to clear mycoplasma or bartonella, so there is our infectious source.

 

Your social circle becomes very small. Sigh...

 

Cobbie

[nicklemama]

DS9 is like this when flaring. I cannot relate it to exposure. He will only like who he likes, keeps a small circle and won't let anyone else in. Period. He will not play with other kids or allow them to join in. He wants to control the playing and gets mad if he can't. When he's doing well, he has no issues w/ friends and makes more friends. Then, he closes the wagons, so to speak, when he gets sick again.

 

He does okay at school but comes home and complains about the same kids over and over when he's not well. He and another boy were having a hard time getting along at school. DS complained about him daily at recess and in the classroom. They had one particularly bad day and the teacher notified me and moved DS away from this boy so both could have peace. Since then, all has been well, no complaining. When I volunteered at school for the class holiday party, I was able to observe this boy and he has his own issues. No big surprise. DS does not do well w/ kids that have issues, probably because they don't observe personal space, which drives DS crazy, and they want to be in charge, also. You can't have two bosses, lol. Kids who are ADHD or really pestering type kids, he cannot get along with. It is too much sensory overload for him.

[bhenry]

My DD is 14 and when she is flaring gets hyperactive and it effects her socially. She has verbalized very clearly to me that she knows when she is being annoying and cant control it. She is different in that she is always trying to hold onto friends and comes across as very needy. Its heartbreaking because she has always had a good social circle even when she was sick, but now that she is getting older friends don't understand it, dump her and then when she is doing well everything is good. Its very hard to watch. Now that she is older she gets very depressed about it all. Just keep the communication open so they know its the illness and not them.

[T_Mom]

We have had the same with exacerbations -- severe ODD, only it is (thankfully ???) directed at parents, not friends.

Regardless, we did counseling (extensive) when the ODD was at its worst. For us, it seemed to be more of a support to me than to anyone else.

ie,. no matter what behavioral plan was put into place, she was still ODD. (and OCD, ticcing, etc.)

 

It was not until IVIG that she started to heal. Based on our experience, I would suggest you try to "set a time limit" of how long your family is willing to let this continue, before you "try the next" rung of the treatment ladder. Have you tried IVIG? Steroid burst give any relief?

 

We lost a year of her life essentially -- and that was such a waste in my mind, when the IVIG made a huge difference.