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Talking to Child about her illness


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My now 12 year old daughter has just been diagnosed with pandas/pitands. We have just consulted with Dr. T and he has put her on a course of antibiotics. I tried to talk to her about why she is taking the medicine. She again denied that anything was wrong with her. It is so sad and frustrating. She once was a very articulate, vibrant 10 year old girl and now her appearance is odd and disturbing and all along even in the most bizarre of her actions she acts like nothing is wrong. Does anyone have any advice about how they communicate hope and reassurance to their child? I know my daughter is suffering but she won't acknowledge anything is amiss.

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This is super tricky to do (especially with someone at 12). In the discussions with our daughter, she referred to the OCD symptoms as part of her -- helping her do things. It wasn't until she got better (and got older) that she had the insight that something was off. When she was no longer exhibiting symptoms she was able to reflect back on the time and say "it was something I sort of wanted to do and then it got away from me" (referring to an eating disorder). When reflecting back on the defiance and outrageous demands, she'd say "it didn't seem weird when I was doing it... it does now." We did do some video taping and then when she was in remission showed her some of the videos. This was effective at showing it and being able to talk about the behavior.

 

At 12, she might not be willing to admit anything is amiss (certainly not to parents) and so you might consider having a neutral confidant involved (such as a psychologist/phychiatrist) or even an journal.

 

Best wishes,

 

Buster

 

 

My now 12 year old daughter has just been diagnosed with pandas/pitands. We have just consulted with Dr. T and he has put her on a course of antibiotics. I tried to talk to her about why she is taking the medicine. She again denied that anything was wrong with her. It is so sad and frustrating. She once was a very articulate, vibrant 10 year old girl and now her appearance is odd and disturbing and all along even in the most bizarre of her actions she acts like nothing is wrong. Does anyone have any advice about how they communicate hope and reassurance to their child? I know my daughter is suffering but she won't acknowledge anything is amiss.

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When she was no longer exhibiting symptoms she was able to reflect back on the time and say "it was something I sort of wanted to do and then it got away from me" (referring to an eating disorder). When reflecting back on the defiance and outrageous demands, she'd say "it didn't seem weird when I was doing it... it does now."

 

 

buster -- so interesting. i wonder if the parents of the older and/or more recovered children could get the kids insights to share. i've always found Sammy's thoughts and memories so interesting -- but it's just a smidge of insight.

 

tay tay -- i have a much younger child and a boy, so maybe not so much relevance. as everyone knows, i so love the book The Explosive Child. one of the techniques to help stave off an explosion is to repeat what the child is saying. it provides a type of acknowledgement that can be soothing and then allows a path to solutions. i've also found this a very helpful technique to gain insight into how he is thinking. you can google explosive child and the author has a website. i don't think the info on the site specifically speaks to this technique to garner info but it is effective for that. i think the website is more about talking to then devise a solution for future actions.

 

basically, you'd repeat what she is saying and stop -- don't add any convincing, explaining,etc. at first, try it flat, devoid of emotion. as you get better, you can add humor, questioning, shock, etc. in trying to get info, you may have to do it in a number of 'sessions'. first, you say something, then repeat what she says, continue as long as you can keep it going without stalling or annoying her. you, 'we need for you to take this medicine b/c it will help the infection that the doctor found you have.' she, 'i don't need it, i'm fine.' you, 'oh, you don't? you're fine?" she, 'yes, i just got mad b/c X.' you, 'oh, b/c X". i now do it with a lot of "oh"s and "hmm"s and "really"s.

 

you mention bizarre actions. not at the height of whatever is happening, but after at a calm time, you can ask why she did or said X. then do the repeating and see if you can get some insights.

 

my mom's friend starting doing it with her difficult husband and found him much easier to get along with.

 

it sounds as if it would be completely annoying to the other person, but it seems that the more unreasonable the person is being, the less they notice. may be worth a try.

 

for my ds, it disarms him and he doesn't feel as if he needs to defend his position so much b/c i'm not trying to convince him of something other than it.

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I like Buster's idea of video taping - perhaps under the guise of wanting some current memories, or maybe there's an event that's coming up. Then, after she's been on abx for a period of time and you feel she may be turning a corner, you might play the videos and see if she comments on anything. Sometimes, kids will admit to having certain thoughts or motives once they no longer feel quite so threatened by those thoughts. OCD can be like a kidnapper. The kidnapper says "you will walk down the street with me and act like my child and not run for help. Because if you run for help, I will harm your family". So sometimes, the denial is their way of "protecting" the family from the bad things OCD is telling them will happen if they don't do the rituals.

 

Another option is to talk about a "friend" you know who's suffering from something called Pandas and then talk about how it's affecting this "friend". You can also break out the OCD books and say you got these for your friend but want to see what your daughter thinks of them - that the friend is about her age and you want to make sure the friend will understand them, so you can anticipate any questions your friend might have.

 

I don't think I'd insist she admit something's wrong, but I would make certain she knows she has an infection and has to take abx until the doctor says it's gone. Maybe as the abx start to loosen OCD's hold, you'll be in a better place to talk about what's happening. And while I wouldn't push her to say something's wrong, I also wouldn't act like that's how you feel. I hope I don't offend anyone with this analogy, but if you knew someone with an addiction problem or similar all-encompassing illness, you might not be able to get that person to admit it, but that doesn't mean you should deny the problem as well. Your daughter may want to be able to talk, so you want to make sure she knows you see it and are there for her to help her when she feels able.

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We found that not until my daughter was on the antibiotic for awhile was she able to look back and see how sick she was, and it didn't happen all at once. Still there are days we talk about things that happen and she can say she didn't know or feel that at the time etc.

 

I think not till they start some sort of healing can they come to realize how much this has taken over their life.

 

 

 

Wanted to add that she was 19 when we got the dx of Pandas so I don't even think age makes a difference until the healing begins.

Edited by Kay
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We found that not until my daughter was on the antibiotic for awhile was she able to look back and see how sick she was, and it didn't happen all at once. Still there are days we talk about things that happen and she can say she didn't know or feel that at the time etc.

 

I think not till they start some sort of healing can they come to realize how much this has taken over their life.

 

 

 

Wanted to add that she was 19 when we got the dx of Pandas so I don't even think age makes a difference until the healing begins.

Thanks all of you. I knew it wasn't going to help to force her to acknowledge something was wrong but knowing other children with PANDAS act defensive helps me to understand that it's the illness and not just my daughter choosing to act this way which really helps. Thanks for all the suggestions too.

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knowing other children with PANDAS act defensive helps me to understand that it's the illness and not just my daughter choosing to act this way which really helps. Thanks for all the suggestions too.

 

 

wanted to also mention that my ds has had troubles with apologizing and admitting he's done something wrong. "it's your fault". "i knew that wasn't right". it's something that to an untrained eye looks like a bratty, obnoxious kid but i believe is actually a symptom. refusing to use manners such as 'please' and 'thank you' also presents. it's stunning -- when he's in an exacerbation, it's a harsh refusal to say 'please' but when healthy, it's automatic.

 

this morning, he somehow stepped on my face while climbing into bed btwn me and dh. i said, "OW!". he said, "sorry". a while ago, he would have stubbornly fought that it was my fault for my face being there. i think sometimes the signs of healing are small and subtle -- but i'll take them!!

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knowing other children with PANDAS act defensive helps me to understand that it's the illness and not just my daughter choosing to act this way which really helps. Thanks for all the suggestions too.

 

 

wanted to also mention that my ds has had troubles with apologizing and admitting he's done something wrong. "it's your fault". "i knew that wasn't right". it's something that to an untrained eye looks like a bratty, obnoxious kid but i believe is actually a symptom. refusing to use manners such as 'please' and 'thank you' also presents. it's stunning -- when he's in an exacerbation, it's a harsh refusal to say 'please' but when healthy, it's automatic.

 

this morning, he somehow stepped on my face while climbing into bed btwn me and dh. i said, "OW!". he said, "sorry". a while ago, he would have stubbornly fought that it was my fault for my face being there. i think sometimes the signs of healing are small and subtle -- but i'll take them!!

 

This is very helpful for me to know as well!! My ds8 does not want to admit when he has done something wrong, and he has also had a hard time apologizing for things. Instead he will blame the other person involved. Most of the time when he has done something wrong, he will adamantly deny it and will even construct an alternate version of what happened. Even if we saw what happened he will try to convince us that something else took place. And he seems so convinced of his version of things. I was really starting to worry about this because our OT told me she would interpret this as "fantasy thinking." While it might be that, I do think it is related to PANDAS. Before his first episode he was not this way at all. I am concerned about this though because even though he is in a better place than he was a couple of months ago when he was in an exacerbation, he shows no signs of moving away from this defensiveness. Maybe it has become an ingrained habit? Or maybe he is still healing. He has become much more polite and considerate though.

 

He also refuses to talk about or admit that anything is amiss with him. When we try to talk to him he plugs his ears and says "blah, blah, blah..." He will then hide under a pillow or run away. This is also what he does when we try to talk to him about anything that makes him uncomfortable. It makes it very hard to have a discussion or to reassure him. We are very concerned about this also. We want him to be able to process things that are uncomfortable for him. We are in the process of looking for a therapist to help him develop coping skills for the anxiety that underlies this. (He worked with a therapist and got to a much better place with his intense nighttime and separation anxiety, but we have to change therapists for insurance reasons.)

What can you do for a chid who refuses to discuss anything uncomfortable??

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knowing other children with PANDAS act defensive helps me to understand that it's the illness and not just my daughter choosing to act this way which really helps. Thanks for all the suggestions too.

 

 

wanted to also mention that my ds has had troubles with apologizing and admitting he's done something wrong. "it's your fault". "i knew that wasn't right". it's something that to an untrained eye looks like a bratty, obnoxious kid but i believe is actually a symptom. refusing to use manners such as 'please' and 'thank you' also presents. it's stunning -- when he's in an exacerbation, it's a harsh refusal to say 'please' but when healthy, it's automatic.

 

this morning, he somehow stepped on my face while climbing into bed btwn me and dh. i said, "OW!". he said, "sorry". a while ago, he would have stubbornly fought that it was my fault for my face being there. i think sometimes the signs of healing are small and subtle -- but i'll take them!!

 

This is very helpful for me to know as well!! My ds8 does not want to admit when he has done something wrong, and he has also had a hard time apologizing for things. Instead he will blame the other person involved. Most of the time when he has done something wrong, he will adamantly deny it and will even construct an alternate version of what happened. Even if we saw what happened he will try to convince us that something else took place. And he seems so convinced of his version of things. I was really starting to worry about this because our OT told me she would interpret this as "fantasy thinking." While it might be that, I do think it is related to PANDAS. Before his first episode he was not this way at all. I am concerned about this though because even though he is in a better place than he was a couple of months ago when he was in an exacerbation, he shows no signs of moving away from this defensiveness. Maybe it has become an ingrained habit? Or maybe he is still healing. He has become much more polite and considerate though.

 

He also refuses to talk about or admit that anything is amiss with him. When we try to talk to him he plugs his ears and says "blah, blah, blah..." He will then hide under a pillow or run away. This is also what he does when we try to talk to him about anything that makes him uncomfortable. It makes it very hard to have a discussion or to reassure him. We are very concerned about this also. We want him to be able to process things that are uncomfortable for him. We are in the process of looking for a therapist to help him develop coping skills for the anxiety that underlies this. (He worked with a therapist and got to a much better place with his intense nighttime and separation anxiety, but we have to change therapists for insurance reasons.)

What can you do for a chid who refuses to discuss anything uncomfortable??

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My dd was much younger at the beginning but from the beginning she has been very aware and expressive about what shes feeling saying things like"I know something is wrong,because I keep saying my words over and I dont want to"-about vocal tics. Have you explained (in easy to understand words) the condition to her? I read somewhere something like saying: when we get an illness our body makes "soldiers" to fight the illness and when its gone the body stops making soldiers but sometimes the body doesnt stop making them and they keep on fighting, causing problems like... there are lots of kids who have this(that helped my dd alot-I guess with one so much older you may have to provide proof) and also maybe try to avoid phrases like "wrong with you" maybe it feels like we somehow blame them for things they really cant control.Im sure it must be so scary for our children to be going through this and not being able to control their minds and bodies.I know sometimes nothing we can say can help but I think in some of those times a hug and a "Im sorry this is happening to you,Im doing all I can to help" really helps. I just try to let her know that I love her-- regardless of her problems.

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