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jasperilla

Possible PANS - not sure she has OCD

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Hi all,

I'm new to this forum, but am hoping to get some guidance. My 7 year old has congenital Lyme, Bartonella and Babesia. We have been treating at a Klinghardt clinic for a couple of years. Our main issues with her are anger / rage, aggression, oppositional behaviors, rigidity in her behavior, emotional lability, etc. She is very unmanageable. She flies off the handle off and on all day, and everything sets her off.  

During her Lyme treatment, she's tested positive for yeast, was treated, and became a completely different child. But only for a few weeks, then she regressed. Then she tested positive for parasites and was treated, and again, became a completely different child. But only for a few weeks again, and then she regressed. 

It's been recently suggested to me that perhaps she has mold toxicity which is causing so much inflammation that her Lyme treatment isn't able to "stick". And also that her emotional issues sound like PANS (she's never had strep, so I don't think it could be PANDAS).

She definitely meets some of the criteria, but I'm not sure she has any forms of OCD. She definitely doesn't restrict her eating - she's always hungry and a bit obsessed with food. But she does have the co-morbidities required for diagnosis. I am willing to pursue this if is seems like it's a real possibility, but the Lyme treatment for her (plus me and my other 2 kids) is draining us financially. 

I guess I'm wondering if there are OCD behaviors that I'm just not seeing on the websites that I'm not thinking of that maybe my daughter does. 

I also can't say that she had a sudden onset of symptoms. She had severe colic as an infant and screamed every waking moment until she was 3 months old. She was a happy baby after that, but then toddlerhood hit and she had the terrible twos. She just never seemed to grow out of it. I'm not sure if because she has congenital Lyme that maybe PANS was triggered when she was really young and I never noticed the sudden onset because it coincided with the time when kids are naturally behaving this way???

I'm just so lost and don't know where to turn...

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So sorry for your struggles.

In my experience, OCD has a thousand faces.  The most common mistake, is that what I feel is OCD is called a "complex tic".  If your daughter doesn't have any tics, then this isn't a consideration for you.  Let me know, and if she does we can converse more about that.

Many children hide their OCD because they are embarrassed about "appearing crazy", and some do a really good job of hiding even from their parents.  One of our son's obsessions was telling us everything, and that included all the other OCD habits, so we didn't have this hidden issue at all.

OCD (to me) includes things like skin picking, or hair pulling - does she exhibit either of those?  Another one is religious scrupulosity.

Here is a site with some discussion of a couple uncommon or hard to notice displays of OCD: https://psychcentral.com/lib/symptoms-of-ocd/ .

Finally, the definitions of PANS (and PANDAS) have been influenced by a strict need for a tight definition for research purposes.  And then, with the PANDAS controversy, certain common symptoms (such as tics) were actually excluded from the definition for political reasons, namely, in a consensus conference (where there was an attempt to placate doubters), and to avoid further backlash from the PANDAS naysayers.  It is also affected by the debate between "splitting and lumping" (those that want narrower more specific definitions, vs. those that want more open, wider encompassing definitions). So, the PANS box is far from perfect, and if in the end your daughter does not quite fit it, that doesn't mean you won't benefit from some of the PANS treatments, as for example, some Tourette's suffers have.

 

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Hi Jasperilla, 

I’m so sorry you’re going through this. Does your daughter have separation anxiety? My son (PANS triggered by Lyme&co infections), had that before I really understood/recognized his OCD symptoms. Also, the OCD was more obvious this last year than in previous flares. Do your daughter’s symptoms flare?   For us that was helpful in diagnosis- his symptoms came and went together. You asked about OCD symptoms that are less obvious. Her are some that I saw at different times- unable to throw anything away including bits of garbage, obsessively collecting sticks (we had buckets of them everywhere), tapping different places on his body or on objects to “even out”, asking lots of questions, for example, “Have you ever touched your shoe and then your lip?”, unable to use his hands to eat, inflexibility around changes in routines (we have to do things in the exact same way everytime, sit in same spots, etc), confessing thoughts, worry that he might not believe the things he says (for example, I’m not sure if I really am sorry).

Hope this helps a bit. 

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Thanks to you both for your replies! It has eased my mind tremendously! 

bobh - No, my daughter doesn't have any tics. She also doesn't pull her hair or pick her skin or have religious scrupulosity. That link on OCD was so helpful, thank you! I guess I was thinking that possibly her rigid behavior was a form of OCD, but I can't find anything that suggests that's a possibility. I'm not surprised about the PANS / PANDAS evolving over time; it seems quite common with these newer unusual syndromes and illnesses. 

mountainmom - No, she has no separation anxiety, and her symptoms don't really flare. They're always there (except for the 2 times we treated her for yeast and parasites and her demeanor completely changed temporarily. 

It's sounding more and more like maybe this isn't the issue. Maybe it's mold, or maybe we didn't treat Bartonella properly - that definitely causes ragey behavior. I'm just so discouraged that we've been treating her Lyme & co for years with no improvement (in fact, she might have even gotten worse in that time). But I've been treating and improving. It's taken years, but there've been gains. And living with her continual outbursts and managing her behavior and the emotional roller coaster is so draining, physically and emotionally, on the entire family. 

Ugh, this is so complicated. I feel like I need a PhD to sort out what's going on with all of our health issues.

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