So many questions-for people who have kids who can explain what it feels like

[Plum99]

My daughter is only 3, and even though she's starting to communicate closer to what normal is for her, I can't get much information out of her, and I am so, so curious and want to understand.

-I know that anorexia is a symptom in an OCD way. Does anyone also have an issue with it because of swallowing? If so, is there a connection or reason? I just can't imagine a 3 year old being able to have a fear of choking or food being contaminated, but she did stop eating and drinking, and never said she wasn't hungry. She would be upset if I took her plate off the table, but wouldn't eat. She would take a bite if I put it in her mouth, and then not swallow. And this was also an issue with water. This was one of the first things I always noticed about her as a signal that she would be getting sick. In the past I thought it was a sore throat, but now I don't. This time it was a urinary tract infection. The first time I recall her not drinking was followed by a rash.

- Do they remember everything? I just have to know how it felt. I cannot imagine. Can they tell you what they were thinking? I might be thinking this is a bigger mystery than it is, because my daughter seemed to just be completely gone in every way, and I can't stop thinking was she just 24/7 afraid? Or in pain? There were times I'd ask her to please tell me how to help her and she's grab my hair and head butt me and cry. Was she trying to say my head hurts and I can't talk anymore? She's not healed, but she's a lot better than before, and I said something about being so happy she came back to me, and she looked right at me and smiled, and it makes me feel like she has some understanding.

-If your child had specific fears, were you able to make connections and understand any reasons behind them? There are still severe fears here, but she's more rational, and expressive, so I am kind of putting a couple pieces together. But some fears seem to have vanished- like fear of her father. And other fears are still extremely problematic. That makes me think there's a reason and I'm missing something. Like fear of water? Does anyone have that? Bath or shower time is one of the most stressful things right now. A couple weeks ago I'd have to just hold and wash her while she clawed at me. I have scars on my hands and arms. Now she just holds on to me and climbs all over me crying before she gets in by herself, I can see she is terrified and forcing herself to do it, but it's miserable and from that point until the point she falls asleep is nonstop anxiety, repeating things, it's the worst part of the day. Does anyone else have a thing with water that was never there before? I am trying to guess- does it hurt? Is skin super sensitive? Is it the movement? Is there any way it has to do with feeling like they can't control going to the bathroom? Can water be in any way related to seizures or nystagmus? After having what I think was a seizure where I dress her, she was terrified to go back to that place in her room for days. There is one type of nystagmus I have only seen her get while lying down, which makes me wonder if that is how sleep problems started. Not sleeping did all start with her standing up, and finally she just was terrified to be left alone in her room. At the same time, she was afraid of lying on her back on elevated surfaces, so maybe a balance issue?

One of the strangest things she used to do was say her skin was wet and ask for towels to wipe it. Sometime she said her skin hurt or clothes hurt. She stopped letting me put her hair up in rubber bands. Did anyone have this? Is it extra sensitive skin, or OCD just thinking something is on there?

Did anyone have Autism spectrum symptoms? She has had autism, OCD, anxiety, ADHD, tics-lots of different symptoms. But I think a very mild version of the autism symptoms were there for a long time, and I wonder if this just exasperated them, if they will go away with the other symptoms that are starting to disappear. Some things overlap, but now that her walk and body movements have changed so much, I'm not sure what I'm seeing. She is clearly swinging her body abnormally, but even her feet are doing something different, which I would compare more to Autism than anything else I've seen.

-If anyone else had eye movements like nystagmus or had absence seizures- what do they feel like? Can they feel them before they happen or while they happen? Do they feel nauseous? Dizzy?

-I'm not sure if this is just a urinary tract thing or a Pandas thing, but going to the bathroom- what is going on? Is it a feeling of not knowing when you have to go? Like you can't feel it coming? Is it painful? My daughter still will not go even a minute without a diaper on, and she was close to being trained before, and never had an issue not wearing a diaper, even not being trained. Or is it an anxiety thing?

- is there a reason why urinary tract infections would be linked to this? A 3 year old who has already had 4 UTIs, hygiene is not an issue, doesn't use bubble bath, it really doesn't seem right

- is there any reason why she would have been doing a lot of holding her head down. I mean like standing up, bent at the waist with her head on the ground. Also sitting in a chair, but hanging her body down off it, so her head was dangling? Does her brain hurt? It would also explain the head banging. Or dizzy?

 

I want to hear all the people's perspectives who have been through it. It all amazes me to no end.

[MomWithOCDSon]

As you've probably read elsewhere here, urinary frequency is a very real symptom of PANDAS. There is definitely something going on with the nerves (Vagus nerve for one, I think), and signaling in the brain from the bladder (a glutamate issue, I think I remember reading). You could search for that here on the forum and find a ton of discussion. Secondarily, however, OCD can play a role, too: fears of wetting oneself, a compulsion to fully evacuate one's bladder before moving on to the next activity, etc. It's an unfortunate "marriage" of the legitimate medical and the OCD "mind tricks."

 

We saw a lot of hanging upside down, weird sensory symptoms (wet skin, itchy skin, "needle-prick" skin, etc.) in our DS during the depth of his PANDAS, and it hung on for a while for him; for a very long time, he preferred to sit and read or watch TV or just hold a conversation with us in an unorthodox position -- frequently with his head hanging down, below the rest of his body. I can remember doing some of that myself as a kid, so I don't know if one's non-PANDAS wiring plays a role here, or if it is some sort of instinctual attempt to ease or calm something going on internally. Our DS's gifted teacher at one point also commented on his need to "balance" constantly, arranging himself in a chair or on his feet in a way that caused him to have to actively maintain his balance while also doing work or holding a conversation, etc. It was almost as if his brain needed to be working on two levels, or on two very different kinds of tasks at the same time, in order to work at all. I still see a little of that tendency, again, in him as well as in myself; both of us are better at doing two things at once than we are at doing a single thing at one time. I know some ADD/ADHD kids function better in terms of paying attention if they have something like a stress ball to squeeze in one hand while they actively engage in listening, so maybe it's something like that?

 

The Asperger/ASD stuff -- yes, we've seen some of that, too, and it was definitely in full bloom during the depth of the PANDAS; we actually had two doctors at the time -- a pediatrician and a psych -- "label" DS "Asperger," though he never fully met the criteria. What we found was that with medical treatment for the PANDAS along with some psychiatric and therapeutic interventions for the worst of the OCD, attention-deficit and sensory issues, those behaviors -- and the "professionals'" labeling of him as Asperger/ASD -- faded. Again, I think this might be an unfortunate "marriage" of genetic tendency and the impact of the PANDAS, exacerbating those tendencies, perhaps by increasing the quantities of certain neurotransmitters in the brain or suppressing others. Given as glutamate has been identified as a fairly significant player in ASD and OCD, I tend to lay these issues at its feet.

 

All the sensory stuff is mixed up in these same issues/impacts, from what I've seen, and the odd behaviors are attempts to soothe the "uncomfortable" feelings. In our DS's case, he never described "pain" as such, but there was lots of discomfort, for sure. And lots of distress over not being able to feel "comfortable," whether it was because he kept feeling like he had to pee, or his skin was prickly, or he couldn't sit comfortably, or find a comfortable position for sleep, etc.

 

If you can find a psych who knows both PANDAS and Asperger/ASD (a tall order, I know), that person, along with a medical PANDAS specialist, could be an excellent ally. When our DS had trouble expressing himself in the depth of the PANDAS stuff (too easily overwhelmed, lots of stuttering, quick meltdowns, etc.), we were fortunate enough to find a psych who'd worked with enough ASD kids, and knew of and held firm the legitimacy of PANDAS, to help us. Her ideas and techniques were definitely valuable, and she was able to help him articulate his feelings with some intelligent, leading questions that would never have occurred to me.