PANS without tics or OCD?

[stacestar]

I'm wondering if PANS or PANDAS can happen without motor tics or OCD. I'm thinking maybe yes?

 

It's my 6 year old niece I'm thinking of. Here's what's going on with her:

 

1. hard to stay focused at school and other times (teacher has mentioned this and my sister has noticed it)

2. falling a bit behind (but not majorly) other students in class (1st grade)

3. a few poorer grades

4. very emotional at times, crying lots, some wailing (but not always); it seems like too much

(she has said often "my body just wants to cry and I don't know why) her dad has said during such times "something's wrong. This isn't normal." I've seen it too and it's not.

5. some joint pain now and then, but not often (ankle, hip, fingers) and foot pain

6. urinary frequency

 

So, my son (as some may remember, b/c I've learned lots here for his situation) has lyme and from what I know now/have learned in the past year, I told my sister I think she should have her tested for lyme.

 

My niece and my son are together very often, playing outside all summer long, same parks, our yard, etc. If my son got bit by a tick, it's not unlikely to think that she did too.

 

The red flag for me for lyme seems like the joint pain that moves around, even though it's not always happening, and is less than my son experienced.

 

I think she should have her tested for strep, celiac, and lyme, and, maybe candidas?

 

My sister is open to testing for all but lyme. She gets mad at me when I mention it. To tell the truth, my sister has been right there for me this whole past year and has seen every stress, worry and hardship that lyme has caused (out of town dr.s, no insurance accepted, poor testing, dire symptoms, etc.) , and I think she just doesn't want to go down that road, so won't believe it could be lyme. Also, my son's symptoms got pretty bad, and my nieces (whatever is happening) isn't as bad. She feels good. It's just that things aren't quite "right".

 

It may or may not be lyme. Maybe celiac or strep? Maybe none and it's ADD, like she thinks. But that doesn't explain increased urination and occasional joint pain.

 

Anyway, to my original question, can there be PANS without tics or OCD? I'm thinking yes? I want to tell her to look up a PANS website. They all stress the motor tics and OCD, which she definitely doesn't have.

 

Thanks for any thoughts.

[pr40]

i would rephrase your question, does OCD come in the version you describe?

or, in yet another way, are you sure you have identified all the symptoms?

 

is the child slow? does she get lost getting dressed? is she particular with how she gets dressed?

is she insisting that things be done this or that way? can she compromise?

does she have memory problems?

hording?

(our dd had all these symptoms at the beginning of her PANDAS plus RLS.)

 

one has to observe child very closely and to know what to look for. ocd comes in many flavors.

look for compulsions and fixations.

[riffleshell]

My first post to this forum had almost the same exact topic line. The answer, for my older son, was absolutely yes -- he never had tics or anything that looks like typical OCD. But he definitely has PANDAS. And he is doing very well now. I'm glad this forum was here to help me catch it early. (Thank you all so much.)

 

My younger son sounds very much like your niece. At this time I have no official diagnosis for him but he has occasional inflexibility, rages and urinary frequency/incontinence. He doesn't have classic OCD but he definitely does have the kind of "particularity" that pr40 describes above.

 

He's a sweet kid, but given what I know I can't help but think this might be PANDAS too. He does not have high strep titers, so I'm taking him to a specialist in two months who can do more extensive testing. In the meantime, I've been giving him some of the same anti-inflammatory supplements as his brother (fish oil, vitamin D3 and vitamin C -- safe enough things to try) and already I see an ENORMOUS improvement. This confirms my sense that we are likely dealing with PANS/PANDAS.

 

Whatever your niece is struggling with, it would be so much better to catch it now. Good luck to your sister.

Edited November 14, 2014 by riffleshell

[EAMom]

My dd's first symptoms were urinary frequency (only), this was with an early undiagnosed flare (about age 4).

 

When she got severe (and we finally learned of PANDAS) initially she had lots of tantrums and "difficult behavior". Also anxiety. The OCD wasn't obvious to us (until later) but she was 7.5 years old. She kept a lot of it hidden and I actually believe her tantrums were partly due to OCD/rigid thinking/things had to be a certain way.

Tics came later. Also, when she finally did have OCD, it wasn't the typical type of OCD that you think of in adults (hand washing etc). In fact, at one point she went several weeks w/out washing her hands. Mostly it was rages, anorexia, considered herself to be a "bad person", depression.

She never had high strep titers, but we insisted on a throat culture (swab) 2mo after onset of behavior change and that was positive. We got the whole family swabbed and younger sister was an asymptomatic strep carrier, swab positive w/out any symptoms (we were eventually able to clear her with Azithromycin). Also we had PANDAS dd swabbed in her vaginal area (due to blood) and that was positive for strep as well.

Eventually when we did the Cunningham test, that also confirmed PANDAS.

Edited November 14, 2014 by eamom

[EAMom]

I should note that Swedo called urinary frequency a "hard neuro symptom" of PANDAS. This was at the CA Symposium (4/14) in Burlingame.

Here's a link with some other tidbits if you want to read more:http://latitudes.org/forums/index.php?showtopic=22653

Edited November 14, 2014 by eamom

[stacestar]

thank you all for sharing! I definitely think my sister should get her tested for some things. If she's willing to start with strep, than that's a good place to start and she can take it from there.

 

Like I mentioned my niece, overall feels good, so it's taken my sister awhile to consider figuring out what's going on. It's been probably a year since it all started, the crying spells, etc. I mean. And at first, everyone just thought she was extremely emotional at times. And it's been over a year that she's complained of joint pain here and there.

 

This past spring though when I heard her say things like "I don't know why I'm crying. My body just wants to." I was like, hmm...I've heard that exact line out of the mouth of my son (with lyme) last fall. And, when I babysit her and she says, "aunt Stacey, my foot hurts" as she's limping, and yet she hasn't hurt it, and she said it a couple of weeks earlier too, and before that it was her ankle, or her fingers...yeah, something doesn't seem right.

 

It was at the parent teacher conferences just a couple of weeks ago that really brought it more into the spot light for my sister, b/c the teacher brought up the urinary frequency (something my sister had noticed at home) but now someone else was thinking it was too much too.

 

very interesting Swedo called urinary frequency a hard neuro symptom. I'll look at that link with other info too, thank you.

 

hearing from you all too about not having tics or major OCD right away is helpful to know also.

 

Right now my sister is going to try some dietary changes to see if that helps (personally I don't think that will do it), but she asked me yesterday what would I do if that doesn't seem to help eventually. When I mentioned PANS and strep she seemed open to testing for that. Again not open to testing for lyme, but maybe it's not lyme, and so one thing at a time. She's such a sweet girl, my niece, and although I hate that she may have something to deal with, I'm glad that my sister is wanting to look into it now.

[nicklemama]

OCD is part and parcel of PANS. The mistake I see many make is not realizing just exactly what OCD looks like in a young child. I did not see it myself. After I read Tamar Chanskys book Freeing Your Child From Obsessive Compulsive Disorder, I could identify many compulsions in my son. Children don't always present with the typical hand washing or door checking we all think about when we hear the term OCD.

 

I would submit to you that urinary frequency, in the absence of a urinary tract infection, can be a form of OCD. If the child has thoughts that tell they must keep going, that's OCD. Getting those thoughts out of a young child is challenging.

Edited November 14, 2014 by nicklemama

[rowingmom]

All you can do is be there as a support for your sister. My sister and her husband have chosen not to have children, but I know that if they had, I would most probably be in your position now. My sister is so physically and behaviourally similar to my DD13, I know they share many genetic tendencies.

 

You have been through this and will know more than your sister's doctors about PANS and undiagnosed infections. But the paradigm change from mainstream medical ideas on psychiatric illness to one that is infection/antibody based is not an easy one. We have all been well indoctrinated.

 

It is hard right now for your sister to buck the system; the shift was hard for me and had a detrimental effect on my marriage for several years. It's not one that is taken lightly.

 

Your sister needs to make her own decisions on testing/treatment, but will turn to you and the knowledge you have gained if her choices lead to a dead end. It is one thing to try and find healing for yourself and completely another to search for healing for your child. She will not give up and you will be there when she needs you. Don't push

Edited November 14, 2014 by rowingmom

[qannie47]

strep can hide in the joints as it did in my son for years and it caused constant joint pain behind his knees. When we eradicated the Strep, years of joint pain went away...and never came back. Magic

[smartyjones]

i don't think I will ever forget the words of the fabulous behavior therapist who first diagnosed my son. . . "what you're describing sounds like OCD, but he's awfully young. there is something I don't know much about called PANDAS". I strongly thought -- "OCD -- what? this doesn't sound like any OCD I've ever heard of."

 

during exacerbation my son has 'just right' OCD. and that is not necessarily just right to line things up and be orderly. it can take the form of 'it's not just right as I had envisioned it." "it was not what I was planning/thinking". this can result in many 'unfounded' tantrums and even rages that it was not what was in the kid's mind, so XYZ may happen or not even progress to the end result, but it's just not right - and that's enough to cause a lot of trouble. it can be difficult or impossible for the kid to explain - often because it may even be difficult for them to understand - or it may be terribly horrific so they don't want to even put it into words.

 

I think my son had some obsession that if he didn't do things exactly as his brother - like putting pants on a leg at exactly the same moment, or putting food in their mouth at exactly the same time - some bad fate will befall his brother. something like that is so very difficult to dissect and understand -- it just looks like a child freaking out and being controlling of a minor, insignificant detail. people observing think, "what's the big deal?". well, if you think your brother's life hinges on how you put your leg into a pant and you're 5 years old -- it's terrifying. can you imagine the weight of your brother's life/health hanging on your 5 year old ability to do things exactly as they are somehow supposed to be done? how could you possibly explain that and ask for help? especially if you are also experiencing expressive language troubles and your thoughts are jumbled anyway.

 

stacestar -- I'd say you should encourage that dad's likely very in-tune thought of 'this isn't normal'. I think that's the biggest thing we have going for us as parents and it's frustrating how often other well-meaning friends, family, teachers and medical personnel try to talk us out of it as a 'phase' or some other nonsense when we know there is something not normal.

good luck!

[stacestar]

more good information and encouragement! thank you guys!

 

pr40, smartyjones and nicklemama, I can see your point about OCD not always being what we think it is. That is something to think about and be observant of. It can be quite subtle I'm sure. This is what I'm learning these days, is that no two people may present the same, but it doesn't mean that something isn't there. oh, and I hear you about some saying it's a "phase" and they'll grow out of it. I feel badly for children regarding that, b/c most adults experiencing the symptoms are children do would probably not say "this is a phase" I'll grow out of it. They'd be like "what the heck is going on here? I need to figure this out."

 

qannie, that's good news about your son, finding the answer for him I mean and then relief. I'm glad my sister seems open to testing for strep, even if not right away. Hopefully though sooner than later, and if I mention your story, she may be open to it a little more, b/c one joint pain that my sister doesn't deny in my niece is the ankle pain she complains so, so often. I've heard her complain of foot, hip, fingers, etc., but my sister says she doesn't hear those, but the ankle she does. thanks!

 

and Rowingmom, you're right. I can't push my sister. I want to. I want to make the appt. for my niece today, just to get the ball rolling. I love that little girl like she's my own, and her sister too. But you're exactly right about not pushing, b/c when I have, even just a little...not good; it doesn't work. My sister and I don't fight about it, but she did hang up on me once for using the word "lyme" after she had said to "drop it". (drop it about lyme that is, not the situation in general).

She's a good mom and like any good mom, like you said too, she won't stop until she finds what her daughter needs. She's starting with certain roads and ideas and if they dead end, it's true she'll look elsewhere. I just so much want to save her time and trouble and say, do this, this, and this...now. But it's for her to work through. I'll offer what I know and recommendations, but try not to push (or mention lyme for awhile I guess.)

 

oh, and interesting that you mention how the paradigm change from "medical ideas on psychiatric illness to one being based on infection and antibody based" is a hard one, b/c my sister said that she emailed my niece's teacher to ask for any ideas on the situation and the teacher came back with the name of a counselor. Now, not that counselor can't help people, but I told my sister, when she asked what would I do, that I think these things (symptoms) are more infection based really and that I would take her to a good Dr., like my son's llmd. (who deals with more than just lyme too). Let's get to the bottom of it, not just tell the child how to "cope" with and "live" with what they have. (That's what the teacher said, that the counselor could offer good coping skills. And, I can see her point a little, but I say only while at the same time you're trying to get to what is causing the problem too and trying to heal the kid.

 

got long here with my reply. Thanks so much, and I'll take more ideas and stories if you have them.

[EAMom]

I also had joint pain and swelling with a strep infection a few years ago. I don't think my PANDAS dd has however.

[EAMom]

Here's a good link on urinary frequency. I don't believe it's necessarily OCD:

"Specifically, the basal ganglia are part of the connections that allow the brain to keep the bladder quiet while filling." http://latitudes.org/forums/index.php?showtopic=11833

Parkinsons patients also have urinary frequency, b/c of basal ganglia problems.

[MaryAW]

Remember, that before the full-on burst of PANS, there are quite often what they call "soft signs." My DD's first soft sign was the urinary frequency, followed by decline in school performance. She hid her OCD very well when that came along. She did compulsions with her tongue inside her mouth, things with her toes inside her shoes, things with her fingers under the desk at school. She even did some mental rituals. I don't think you can tell from just observation if a child has OCD.

 

I would recommend she call Swedo's office at the NIMH and ask them what they suggest she do based on her daughter's symptoms. I heard Swedo say the urinary frequency statement also at a conference. I wish I knew that way back when. Maybe my DD might be okay today.

 

If it were my sister and niece, I'd be pushy - but that's me - I'm very pushy!

[BeeRae22]

A quick thought I feel the need to express.... Sometimes the wrong therapist an be worse than no therapist at all. Therapists that aren't trained in ERP/CBT can do more harm than good. We learned that the hard way. a therapist that isn't well versed in OCD attempting to give a child with OCD "coping skills" can be frightening, and just teach the child to hide their behaviors better. I would likely recommend against any "counselor" or "therapist" that a teacher or school staff member might recommend. Just my thoughts-- might be a bit jaded because of my personal experiences, I admit. But just thought I'd put that out there-- proceed with caution on that one!