OCD mainly resolved, behavior problems peaking

[lsad765]

Hi all,

 

I haven't posted in a while since my 6.5-year-old daughter's OCD symptoms -- which were always relatively mild -- are in a pretty good place (for now!) thanks to Azith and therapy. But I've been reading many of your posts and continuing to learn from all of you.

 

Although my DD's OCD is in a pretty good place, her behavioral problems are worse than ever. She is tantruming, crying a lot, complaining about school, complaining about home, lots of anger at me and her sisters and even friends, frustration with all of us and herself, feeling very "down,"etc. I could go on and on.

 

In her defense, in addition to her pandas, we have had a lot going on in our house. Her twin sister is about to have reconstructive surgery on her nose from an injury when they were born preemies. She also has a 2 year old sister (and as you know, all 2 year old demand a ton of attention). Her father has a new job and is working very long hours. I recently quit my job so I can focus completely on the kids and a modicum of housework But with three kids, it's hard to give my pandas dd all the attention she needs. I've started implementing "special mommy" time with just her (and her twin sister to be fair). I'm taking her to a child psychologist next week, not for ERP or OCD therapy, just for play therapy and talking about her anger, etc. Also, I'm going to try a sensory gym again, since one of her OCD/sensory things that remains is clothing issues and since I'm hoping some positive one-on-one time with another adult could be good for her.

 

Any other ideas from those experienced with this....?

 

All the best and thanks as always --

 

 

 

 

[dcmom]

Sounds like your hands are full!

 

Everytime, absolutely everytime we see behavior issues pandas (and usually underlying ocd) is the issue. We have in the past tried to look for outside reasons (moving, sibling stuff, school, etc) but every time, sometimes in hindsight it has been pandas.

 

When well from pandas, we have no behavior issues to speak of, and parenting my kids is a complete pleasure. Now, after four years of this journey, I know when parenting becomes difficult it is pandas.

 

I would guess there is still ocd, and the behavior issues are in response. There may be ocd she is not sharing. Also, the sensory issues can cause great irritability. My one daughter has at times looked uncomfortable in her own skin- it makes her miserable (we have had major clothing issues in the past too). The young kids have no way of dealing with this, which I think is what brings about the tantrums, etc.

 

I would strongly advise continuing with pandas medical treatment, and getting a qualified ERP therapist on board. You will get this under control.

[airial95]

My 7 year old exhibits many of these same issues, tantrums, crying a lot, frustration with herself, and an overall depression. In her case, as dcmom has indicated - it is OCD related. She tends to have a lot of intrusive and repetitive thoughts. She doesn't share them with us, so it's hard to get at the root of it. But much of her OCD are anxieties and worries that she internalized to herself.

 

For example, one of the few she finally opened up about (only after the fact): She had been moody, quick to anger, crying a lot and very down for several days in a row - for no apparent reason. When she finally did open up to us, she admitted that she couldn't stop thinking about what color the car that was stopped next to us at a red light was that we saw driving home from school OVER A WEEK AGO - and it was worrying her. No matter how hard she tried to remember, or tried to stop thinking about it - she couldn't. It was driving her crazy - leading to her behavior.

[smartyjones]

just to mention, I agree with dcmom and arial. my ds has only really shown 'typical' ocd symptoms in pretty extreme exacerbation. he tends toward anxiety and his ocd is of the 'just right' type. in this, it is hard to discern what the problem is or how it is ocd -- for us and for him -- he really can't explain it and may not even know -- it's just not right -- and this can result in behavioral issues. we worked out a good system where I would ask him, "do you know what the problem is, do you not know, or do you not want to say?" more often than not, it was, "it just is." "not want to say" was extreme ocd -- I think of the frightening type to him -- luckily we didn't hear that much at all.

 

I would wonder at age 6.5 if the school complaining could have a real basis in trouble. just from our experience, so may not be your issue at all, ds had trouble has trouble with writing -- composing and the physical act of writing. 1st grade he was homeschooled and I did much scribing for him. 2nd grade, they thought it was a power struggle issue -- upon testing, he is a classic 2E kid with much lower working memory skills than other -- meaning, by the time he finishing the first word, he has forgotten the sentence or even what is was about. this caused EXTREME stress for him in school -- especially at 'journal' time. may not be, but could be that she is experiencing something that is a real problem at school that she needs help with.

 

we worked out a great problem solving system with ds based on the 6 steps of problem solving. we found he often has a different 'goal' than everyone else involved. of course, it's hard to reach an agreeable solution, if you have a different goal. this info is invaluable to cooperative problem solving.

 

lastly, I LOVE the book, The Explosive Child. the repeating technique is great to glean info about what a child is thinking.

[lsad765]

Thanks to both of you. If it is OCD, I have had no luck in figuring out what it is. If you have any suggestions for how to get this out of a small child, please let me know! At 6.5, she is not terribly articulate about her feelings, etc., but also she's so touchy and on the defensive right now that most conversations turn into firestorms.

 

The clothing issues are definitely a problem and she is miserable because of it, so I will take steps to address this.

 

The only other thing is that she is saying is that she really angry, feels left out, hates everyone, and wants to "say mean things" to me and to her little sister, e.g. To me, that seems like she is feeling hurt/angry/etc for various and sundry reasons. Do you think this is the OCD itself? Or is this just the manifestation of feeling miserable?

 

This is difficult to figure out and I think many of you know that there are no solid ERP therapists here in Northern NJ. I am taking her next week to a psychologist schooled in dealing general anxiety in children. I don't know how much it will help.

 

If you have other ideas about how to talk to young kids about what their OCD issues are, I'm all ears .... (I should mention I have read the What To Do books and will re-read them again with DD to see if that helps).

 

Thanks, as always --

 

EDIT: Posted this before I read your post, smartyjones. Thank you and I'm reading a sample of Explosive Child right now!

Edited June 6, 2013 by lsad765

[dut]

I would agree with the above posts that for us if there are behavioral issues they are Pandas related too. However, we can have issues without an OCD basis. We do see OCD for both PANDAS kids, dd much more so, but we also get issues that aren't rooted in OCD.

 

My ds presents very differently than dd and although we have some OCD flickers, he is very behavioral - impulsivity, aggression, rage at times, very physical, sensory, oppositional, hyper and it all disappears and a typical 5 year old emerges when he is truly PANDAS free.

 

My dd can be combative and just plain annoyed for most of the day when she is flaring and again it all disappears when well. Dd is far more OCDy and anxious and some of her behavioral issues are rooted in OCD but many aren't.. just the myriad of symptoms that PANDAS can cause IMO.

[smartyjones]

isad -- if you were interested, you could check out the wesite of dr. ross greene, of the explosive child -- it's livesinthebalance.org

 

some people get frustrated in the book when they don't think it is so helpful -- I am such a huge fan of it, not so much for causing changes in my ds (although I do think it was helpful for that) but more so in giving me tips and techniques on how to work and interact with him when he was being difficult. it helped me to be involved with him but not be dragged into the drama of the tantrum/problem. that's really a good first step -- to remain objective so as to help find a solution. once you're objective, you can work on ways to help draw out information -- sometimes that she doesn't even realize herself.

 

briefly -- if she says she feels left out and hates everyone -- what is your normal interaction with her then? in this technique, you would as nonemotionally as possible say, "you're left out?" it's best in the beginning to be as brief as possible. with things like, "you do", "really?" , "I see", "I guess I would too"

be aware some people worry that it will upset the kids more -- my ds never seem to notice what I am doing. however, his very inept previous vice principal didn't know how to do this correctly and angered him. try not to add much, offer suggestions, offer better ways to feel or act -- just repeat what she has said. you're trying to get her thinking and talking. as you do it more, you can add humor, surprise, amazement.

 

it's very helpful. recently, ds brought up his fear of tornados from the past -- his news magazine was highlighting tornadoes the same week of the tragedy. the front cover stated the US has the most tornados of any country. when going to bed, he said, "I don't even want to live in this country". I stated in amazement, with a little edge of humor, "ds's not going to live in this county!!" it turned into a funny joke with him, me and his brother and he relaxed about it b/c he realized it sounded silly when he heard it out loud from me that seemed different from how it made perfect sense in his own mind. granted -- he is in a very healthy state -- but this could easily have turned into him worrying about that event happening in our town.

 

good luck!

[dcmom]

Isad- it is really hard when they are young. During a flare- with both of my kids- we see a lot of difficult behavior.

 

I think there are several possible explanations: number one for us is ocd. OCD rarely seems to be the typical contamination fears. We have seen ocd where they have had fears, sensory issues, and intrusive thoughts. My older daughter had an intrusive thought that I loved her sister more at one point- which caused a lot of anger and behavior issues when her sibling was around. I think younger ones tend to get the just right ocd more- as we saw that a lot initially, less now.

 

Second, I do think there is a possibility that pandas can cause irritability, or oppositional behavior that stands on its own, just like it can cause ocd, adhd, etc.

 

Third, and for us important- there is an analogy that goes something like our kid is a glass of water. During the day (at school) there are many things that are difficult for them, each one adds a little more water to the glass (germs all over, trying to do their schoolwork perfectly, a friend touching them, the tag in their shirt itching, a small drip from the water fountain on their shirt, I could go on and on). At some point, the glass is full and then overflows- and that is your child having the temper tantrum.

 

These are all reasons for the bad behavior- but not an excuse. I LOVE smarty's repeating technique- it works well for us (when we remember to use it!). But, I believe we need to hold our kids accountable for age appropriate behavior. They need to be told what is expected. You should help them strategize how to comply (ie when mad, go to your room and hit your bed with your pillow) and calm down. And if they misbehave, they need to have consequences. It can be a long road, but this has helped our kids.

 

I really think the clothing sensory issues can be a MAJOR contributor here. This is kind of an ocd thing for us- in the just right dept. Buying softer clothes is not really facing the issue (though we did try it!). To me her wanting to say mean things to you, sounds like possible ocd (intrusive thoughts), and her feeling left out could also be ocd (as in when my dd felt I loved her sister more). When my dd had that issue, she was always angry at me and her sister. I started also trying to spend "special" time with her, even giving her a mom and daughter spa day. But that was not the answer. It was not until she was feeling better pandas wise, that she was able to , with great difficulty verbalize to me what she was thinking. She was 9 at the time.

 

OCD is really, really, sneaky and mean. It takes many forms. It is NOT easy to spot until (like I do now) you start to initially assume that any change for the worse in your pandas child is ocd.

 

And yes- if you find a good ERP therapist in NJ- let me know (we live in the Bedminster area. We went to USF two years ago- I highly suggest it for you and your dd if things do not improve.

[nicklemama]

Everything DC mom said. Behavior problems=OCD unfulfilled.

[dut]

I don't want to get in to a back and forth, honest and totally agree with dcmom that you should look for underlying OCD but I know that for my kids we do get stand alone, PANDAS behaviors that are not OCD driven. Many are anxiety driven which is probably the same continuum but we also get what feel like pure and simple base emotion changes, especially the combative, oppositional behaviors that my kids express. We could discuss and delve until kingdom come but we couldn't find anything/voice any "idea" as it's foundation.

 

I'm not saying OCD doesn't drive many PANDAS symptoms, it does for my kids too and we've found a great ERP CBT lady that has helped immensely but for my kids it's feel as though we have central cores of 'defined thinking' type symptoms and then this amorphous/nebulous emotion-driven surrounding that feels way more limbic. It's like moods that, instead of being driven by thoughts, are just plain, atavistic emotion.

 

I could be wrong and for my ds I may well be as he has trouble voicing and wishing to voice his thinking/emotions (he's 5 and male). But my dd has always been able to talk openly and clearly express her feelings and thoughts...

 

Sorry bit of a rant but .. the good thing is that for us, when we medically treat the PANDAS, the behaviors recede.

[nicklemama]

Ditto Dut. Treat PANDAS and behaviors recede (OCD or not).