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Cutting as a symptom


KaraM
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Hi,

 

Was talking with an old friend last night whose teenage daughter's personality "changed" about two years ago. In addition to depression, she started cutting herself.

I thought I read somewhere that cutting was related to OCD, but can't seem to find that info anywhere now. Anyway, I was just curious if anyone experienced this or other self mutilation behaviors with their PANS/PANDAS child or if anyone can point me to some info they've come across.

 

I've been googling for 20 minutes or so and have searched this and the Lyme forum, but now luck.

 

Will post this on the Lyme forum, too.

 

Thanks,

Kara

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For our family, dd was only three when symptoms first appeared, but in the worst of it she had started to head bang and could verbalize enough to me that it was a double edged sword - it helped her feel better and more in control, and her mind said she had to do it or something bad was going to happen.

 

That being said, I'm a clinical social worker by trade and work alot with cutters, and was actually a prolific cutter myself for about 10 years during my late adolescence. Cutting can have a variety of roots, but the most critical thing is that it works really well! When the cut (or other self harm) happens, there is a rush of feel good hormones that are released into the brain immediately - that helps calm the brain when it is experiencing chaos - no matter what the root of the chaos is. Recent best practice indicate a harm reduction model (as in telling her to stop will be useless), but rather looking at introducing & supporting alternate choices that are not as self-harming while realizing stopping cold-turkey or using guilty logic will most likely not be affective at all.

 

For dd, her brain chaos root was definitely PANDAS, but the self harming was a way for her to self-regulate, as well as feed the ocd.

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Thanks Nancy and Junkyard Jean...so do you feel like treating the PANDAS through antibiotics, IVIG, etc. ended up reducine or eliminating the need to cut?

 

My DD16 cut for a couple of years. She did other forms of self-mutilation during this period as well. It's been over 6 months since she has done it. It's definitely tied to her anxiety/OCD.

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Kara,

 

Unfortunately we have not yet found the underlying cause of my DD's anxiety/OCD. We have treated PANDAS/PANS for years with abx, supplements, and IVIg. All the other symptoms (rages, tics, sleep problems, etc) are gone. And we have treated for Lyme and Bartonella for the past two years and MTHFR for the past year. The joint pain/stiffness is gone, as well as the fatigue and other Lyme symptoms. Her moods are much more regulated thanks to L-methylfolate. I'm thinking the anxiety/OCD may be tied to either MTHFR or Bartonella and we still have more things to try, like Leucovorin instead of L-methylfolate, and putting her back on Rifampin for a longer period of time.

 

What eventually helped the cutting, binge eating, and restricting of food, as well as her OCD and social anxiety was spending 3 months at OCDI/McLean where she got the most AMAZING help with ERP and mindfulness techniques. I think they literally saved her life! And insurance covered most of it. :-)

 

Nancy

 

Thanks Nancy and Junkyard Jean...so do you feel like treating the PANDAS through antibiotics, IVIG, etc. ended up reducine or eliminating the need to cut?

 

My DD16 cut for a couple of years. She did other forms of self-mutilation during this period as well. It's been over 6 months since she has done it. It's definitely tied to her anxiety/OCD.

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I would agree that ERP and learning OCD/anxiety coping skills helps this. I would strongly urge this parent to try to get some very good CBT/ERP therapy to help the child stop this.

My child also binge eats when she is anxious or sad, whereas the rest of the time she is hardly eating anything (really).

Today, when I asked her to not get on the computer and set off a big meltdown. She later pointed out that the computer time (she limits herself to 30 mins or so quite well) was a positive coping skill and since I said no to that, she could only do a "negative" one- cutting. She is wise beyond her years (learned it all from intensive CBT!)

I realize what junkyardjean just advised, which is that by redirecting her pain, she could avoid cutting. Of course, I screwed it up! Now I know to let her use her "good" coping tool (netflix) next time.

I do not "get" cutting, but I guess I never well. Seeing your child do this makes you scared, angry, frustrated and hopeless/helpless at the same time. I wish that no one would have to deal with this sad act.

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Rather than just pick one or two articles for you, I will post the whole google search:

 

Search words "self injurious behavior + OCD". I did narrow the parameters down to only scholarly articles as well. If you also want anecdotal information, then just do the search over with the search words I listed.

 

 

My link

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Been through this. DD hid it from me but it began six years ago when she started an intractable yet symptomless sinus infection, which went undiagnosed for at leat six months and took two sinus surgeries thereafter to sort out. I don't think she has ever been was a chronic cutter, but in any case she stopped it until last year when she went through occasional bouts (likely from high anxiety from undiagnosed strep, which her brother had). This year when she finally received abx for Pandas we had what appears to have been major herx with brief resumption of cutting, suicide attempt, and week long stay in psych ward (her choice--over 18). Once that was all over, her big time anxiety has just about died away and there has been no more cutting that I know of.

 

I too will never understand cutting, but I think it helps them deal with their high levels of anxiety. In light of my personal experience I wish we'd had her tested for Pandas six years ago--her brother had long been diagnosed. It could have saved her and us a lot of grief. It certainly would do no harm for this family to test for Pandas and could do a lot of good.

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