emotional behavior

[taytay]

My daughter has just been diagnosed with PANDAS. She has been ill for over a year. We were told by several doctors and psychologists that her symptoms had an emotional base. We are so thankful to have a diagnosis and know that she is not mentally ill. Has anyone else experienced their child's symptoms lessening when they are alone with a sibling talking or playing?

[nicklemama]

My DS has no siblings, but he did really well, even during the worst of his exacerbation, when he was playing w/ his best friend, who lives down the street, especially if he was at the friend's house. He did not play well w/ other kids, though. His friend's mom, who is also my friend, always said he did great and if she didn't know better, she wouldn't know anything was wrong when they were playing together.

[taytay]

My DS has no siblings, but he did really well, even during the worst of his exacerbation, when he was playing w/ his best friend, who lives down the street, especially if he was at the friend's house. He did not play well w/ other kids, though. His friend's mom, who is also my friend, always said he did great and if she didn't know better, she wouldn't know anything was wrong when they were playing together.

[taytay]

Thanks for your reply. our daughter's symptoms bacame so severe we were amazed when we heard her playing almost normally with her sister. I think that kept me believing the doctors when they told us it was all emotional. She was 10 when she suddenly developed a dry, breathy cough after a mild cold and coughed every 10-15 seconds. She became quieter, a little withdrawn and distracted and suffered severe separation anxiety. Her symptoms progressively worsened with strange looking neurological symptoms and odd hand posturing. She is 12 now and has just been diagnosed. We are talking with her doctor tomorrow about treatment. I'm praying it's not too late to help her. She is better in some ways but very ocd and just not herself. She denies anything is wrong when we have tried to talk to her.

[LNN]

I don't want to hijack the thread and ignore your original question (for the record, my son's symptoms actually got worse around his sister). But when you said your daughter denies anything is wrong, it made me wonder if you've done ERP (exposure/ritual prevention) or CBT (cognitive behavior therapy) with her. These are behavior therapies specifically for OCD and anxiety-related behaviors. I don't want to "lecture" if you're already familiar, but one of the first benefits these therapies give you is a common vocabulary to talk about what's happening inside her head. It teaches her to recognize and "catch" OCD and re-gain her ability to control her OCD thoughts and actions.

 

An excellent place to start if the book "What to Do When Your Brain gets Stuck" but if you'd like more information, please say so. There are some real life experts here who can give you some ideas on how to help your daughter talk about what's happening.

[taytay]

I don't want to hijack the thread and ignore your original question (for the record, my son's symptoms actually got worse around his sister). But when you said your daughter denies anything is wrong, it made me wonder if you've done ERP (exposure/ritual prevention) or CBT (cognitive behavior therapy) with her. These are behavior therapies specifically for OCD and anxiety-related behaviors. I don't want to "lecture" if you're already familiar, but one of the first benefits these therapies give you is a common vocabulary to talk about what's happening inside her head. It teaches her to recognize and "catch" OCD and re-gain her ability to control her OCD thoughts and actions.

 

An excellent place to start if the book "What to Do When Your Brain gets Stuck" but if you'd like more information, please say so. There are some real life experts here who can give you some ideas on how to help your daughter talk about what's happening.

Thank you so much. We are just discovering there is physical reason for all our daughter has been going through. we are consulting with Dr. T. this afternoon about her treatment. But yes, it has been very frustrating trying to talk to her about her symptoms. Early on she did admit when pressed that she knew something was wrong and cried and said she was not the same girl any more. She cried and rubbed her face and said she is different now. But generally she denies anything being wrong with her behavior. I would love any suggestions on how to help her talk about what's going on. We are just starting down this road. I will definitely get the book though and appreciate any suggestions.

[LNN]

I hope your consult goes well. Can you elaborate a bit on your daughter's symptoms, aside from the cough? Examples of her separation anxiety, or how she acts with kids other than her sister, or other behavioral examples?

[KaraM]

She is better in some ways but very ocd and just not herself.

 

When you say she is very "ocd," what are her obsessions and compulsions? Although it's questionable as to how helpful therapy is when there is an untreated infection at the route cause, once the infection is being treated, you can us some exposure and response therapy to help re-train the brain and get passed the obsessions and compulsions. The book LLM mentioned goes into it. Another book for you could be "Talking Back to OCD" by John March.

 

If you tell us some of the obsessions and compulsions she has, we can also try to offer suggestions on how to help her get over them...

 

Kara

[MomWithOCDSon]

Like LLM and Kara, we've been dealing with OCD behaviors in our house for quite some time, also, and while we're far from "experts," we might have some real life experiences and strategies to share. But OCD can take so many forms, so to be truly helpful, can you elaborate some more? For instance, does your DD display:

 

1. Contamination concerns (concerned about cleanliness, "ickieness" or germs)?

 

2. Scrupulosity (concerned about being morally and/or ethically upstanding . . . doing the "right" thing)?

 

3. "Just right" OCD, where she needs to do a certain action, or say a certain phrase or word until it "feels right"?

 

4. "Evening up," where if she touches something with her left hand, she must touch it with her right, or similar?

 

5. Counting, as in counting items repeatedly or having to do a behavior a certain number of times before moving on?

 

6. Thought rituals, going "inside her head," ignoring external stimuli, while she "thinks" through something repeatedly or "processes" a simple request or task over and over again, for an extended period?

 

We've seen all of these at one time or another since OCD has a tendency to "morph".

[taytay]

Like LLM and Kara, we've been dealing with OCD behaviors in our house for quite some time, also, and while we're far from "experts," we might have some real life experiences and strategies to share. But OCD can take so many forms, so to be truly helpful, can you elaborate some more? For instance, does your DD display:

 

1. Contamination concerns (concerned about cleanliness, "ickieness" or germs)?

 

2. Scrupulosity (concerned about being morally and/or ethically upstanding . . . doing the "right" thing)?

 

3. "Just right" OCD, where she needs to do a certain action, or say a certain phrase or word until it "feels right"?

 

4. "Evening up," where if she touches something with her left hand, she must touch it with her right, or similar?

 

5. Counting, as in counting items repeatedly or having to do a behavior a certain number of times before moving on?

 

6. Thought rituals, going "inside her head," ignoring external stimuli, while she "thinks" through something repeatedly or "processes" a simple request or task over and over again, for an extended period?

 

We've seen all of these at one time or another since OCD has a tendency to "morph".

Wow! Well, Taylor has been ill for well over a year and I didn't realize the OCD behaviors as such at first but she became quieter with the cough and did not want me to leave the house without her. She finally admitted she was afraid something would happen to me. When she finally after several months improved and would allow me to leave without her she still would say goodbye repeatedly and would often follow me out to say "bye" one more time as if the other times weren't quite right or enough. As she worsened she became more withdrawn and started wearing the same clothes over and over, did not like to be embraced and couldn't stand to have her head touched. She has pretty long blond hair and suddenly she wouldn't brush it or take care of it. She is still doing this now. She made comments that she was not good enough to do a Bible study with us or read her bible any more but this has improved gradually. Just recently her sister told me that she stared off into space while they were playing and ignored her sister while she was talking to her and then moved several feet forward and touched the wall and then told her "I'm sorry, I just had to do that." She does seem better in that she wants to do things again and enjoys certain activities but she seems to have lost herself and doesn't know how to be Taylor any more. She used to tear up or remove pictures of herself from before she became ill. She didn't mind pictures from when she was a baby or small child but more recent pictures she couldn't stand to look at. Now she is more accepting of the change and I want to help her regain her personality back.

[LNN]

It sounds like there may be more going on inside her head than she's able to share right now, which must be scary for her. I think reading a few books with her may help open a conversation - in addition to "what to do when your brain gets stuck", you can get "Up and Down the Worry Hill", "What to Do When You Worry Too Much" and for you, as Nancy suggested, "Talking Back to OCD". These are all excellent books to help you and your daughter recognize OCD and gives tools for coping with it.

 

Like Kara said, in infection-triggered OCD, it often requires medical intervention before you see success with therapy tools like ERP. But it sounds like giving your daughter a vocabulary and helping her understand what's going on will be key to helping her fight back and regain her old self. She may be hugely relieved to find out that 1-3% of kids suffer from OCD and that having these thoughts doesn't make her a "bad" person. I'd recommend getting these books and reading them with your daughter at set times every day, so you create a "date" with her and allow time for her to share her feelings. We do it at bedtime, so the house is quiet, there are no interruptions, and we can talk for as long as my son needs to. But some kids find talking about their OCD can increase their anxiety, so for them, bedtime might not be the right time. But the important part is to make time every day where you and your daughter have together time and can have uninterrupted, dependable talk time.

 

Once you read these books, I think you'll start to see many of your daughter's actions as potential OCD behaviors and you'll both have a common language to talk about them. When that happens, you can list a few here and we may be able to brainstorm ERP ideas for you to try. We've all been there.

[MomWithOCDSon]

Wow! Well, Taylor has been ill for well over a year and I didn't realize the OCD behaviors as such at first but she became quieter with the cough and did not want me to leave the house without her. She finally admitted she was afraid something would happen to me. When she finally after several months improved and would allow me to leave without her she still would say goodbye repeatedly and would often follow me out to say "bye" one more time as if the other times weren't quite right or enough. As she worsened she became more withdrawn and started wearing the same clothes over and over, did not like to be embraced and couldn't stand to have her head touched. She has pretty long blond hair and suddenly she wouldn't brush it or take care of it. She is still doing this now. She made comments that she was not good enough to do a Bible study with us or read her bible any more but this has improved gradually. Just recently her sister told me that she stared off into space while they were playing and ignored her sister while she was talking to her and then moved several feet forward and touched the wall and then told her "I'm sorry, I just had to do that." She does seem better in that she wants to do things again and enjoys certain activities but she seems to have lost herself and doesn't know how to be Taylor any more. She used to tear up or remove pictures of herself from before she became ill. She didn't mind pictures from when she was a baby or small child but more recent pictures she couldn't stand to look at. Now she is more accepting of the change and I want to help her regain her personality back.

 

It sounds as though she may be making her way up and out of that darker period on her own, thanks to the antibiotic intervention. Some of her behaviors sound more like sensory integration issues (not wanting to be touched in certain places or in certain ways, avoiding caring for her hair) than they do OCD, and that's not an uncommon cormorbidity, especially for PANDAS kids. And I believe a lot of kids diagnosed with "regular, old-fashioned OCD" also can display some sensory issues. Another book title I might recommend in light of those symptoms is "The Out-of-Sync Child," which will give you more information and some strategies about helping a child through some of those sensory challenges.

 

Repeating "good-byes," seeking re-assurance, just feeling as though she "has" to touch things (walls, etc.) in a certain way . . . yep, those all sound like OCD. The book titles LLM recommended are really good ones. I guess the main, "big bite" of advice I might give you is that if/when you "feed" OCD by validating your child's fears or rituals, it will tend to grow. You may think you're helping them, soothing them by trying to assuage their fears, reassuring them, joining in the repeated "good-byes" so that their separation anxiety appears to lessen. But the insidious thing about OCD is it just takes firmer root then, and if yesterday your DD needed to hear 10 "good-byes" before she could be on her way, tomorrow it will be 15, and the next day it may be even more than that. She'll need to be taught and encouraged to "push back" at the OCD fears and compulsions, to "shrink" them, rather than give into them and help them grow, and you'll need to get right in there with her and do the same thing, even though it will probably initially appear to make her even more uncomfortable, more unhappy. It's not an easy thing for anybody, but with the right tools and some determination, it will go a long way toward getting your DD back to her pre-PANDAS happy, normal life.

 

The abx will help because it will make her feel better and give her more leverage against the OCD. The books will help because they'll give you examples of situations that you'll be able to relate to, let your DD know she's not alone, and suggest real-world strategies and solutions for confronting and dispensing with the OCD behaviors. Ultimately, though, if you need some more help as a parent (I don't know about you, but while I love books for ideas, support and confirmation that I'm "not alone" and that others have been in my shoes previously, sometimes I need a real, live person to validate my parental strategies or give me real-world input on a particular situation), and/or if your DD needs to "hear it" from an outside authority (the older kids get, the more it seems they need to hear it from somebody besides their parents -- at least that's been the case with my DS14), I would strongly encourage you to seek some help from an ERP-trained therapist. Even on a short-term basis, a good one could be invaluable in terms of providing support and fresh ideas for helping your DD.

 

All the best to you.