First week with a child who likely has PANDAS

[Q_is_my_world]

7 y/o daughter had strep about two weeks ago. She had it for a few days before we caught it and got her some antibiotics. Then about a week later we noticed her reporting back to us every now and then these insignificant stories of something that she touched, or the way she walked. 7y/o girls are a strange lifeform anyway so we didn't pay much attention. But, she has been getting progressively worse.

 

And here's where my question comes in. She doesn't have any tics. Or any rituals per se, but she is suddenly a different person and I would say she is fighting this compulsion to report strange things. We kept a log last night for a couple hours so docs (and you) could look at it. Could this be PANDAS? Is this behavior (below) indicative of OCD? Really looking for support.

We live in Phoenix and have an appointment with Dr. Melanie Alarcio in 3 weeks, but in the meantime we're freaking out. We are considering pulling her from school and getting home instruction until we get a handle on it. We don't want her to disturb the class, and moreso don't want her to get picked on or feel alienated.

5:29: "momma since I was (something about her finger) I was doing something like this (shows me wiping hands on thighs)
5:31: in rapid succession...
"I keep rubbing my thumb and finger together I don't know why"
"I keep rubbing my forehead I don't know why"
"Is it okay if I put my feet in the table bc I was doing that"
"I keep rubbing my nose I don't know why"

5:32:
"Momma I keep doing this (runs I and shows me her snapping/rubbing her fingers together)
Immediately, "I keep rubbing my legs"
"I keep rubb
"I keep thinking this is my middle finger when it's not" (shows me other finger)
"I keep rubbing my eyebrows like this"

5:37: continued with momma I did this relation to wiping things on hand etc.

5:38: momma when I'm done with the tissues do I set them on the table and hen bring them over
Momma I keep itching the bottom of my nose

5:41: momma I had a crust on my ??? And something about the floor
Momma I did this... (Showed me a tissue and how she folded it and rubbed her hand down it) and rubbed it like this

5:44: I have crust on my hand from my booger so I put it in the garbage

5:48: ALL AT DINNER IN TWO MINUTES
gravy keeps getting on my fingers, something about touching the iPad, I keep kicking wherever I get gravy on my fingers, I accidentally dropped gravy, a tiny piece of gravy is in the table can I have a napkin, I keep doig this and itching my ear, I keep itching my ear and rubbing it on the napkin and rubbing my ears, right now I was itching my lip and keep putting it in my mouth, I keep biting right here

5:57: I got a crumb on my foot somehow, I just licked my wrist, now I got sauce in my elbow and middle finger,

5:59: I just wiped my mouth bc milk was on it, I keep licking this (watermelon), I keep itching all around I'm so itchy

6:01: momma a seed was off of the (shows strawberry) and I ate it

6:04: something about messy and wiping it, for some reason I keep doing this (wiping nose), I keep doing this (moving tongue side to side).

6:09: I'm scraping all over me
I keep doing this and this (wiping nose with napkin), I keep doing this (shows me fingers again, rubbing them kinda like snapping),

6:10 I accidentally had strawberry juice on my hand and I actually did that (shows me wiping her hand on Ollie's shirt) because I don't know why

6:13 I keep scratching under here, back of neck under hair, I have a seed right here (shows me strawberry sees on thumb)

6:17 I got gravy on my hand right here, I licked the end (of the spoon) bc of the gravy, I keep getting gravy all over, a I just did this , touched that (shows me touching her shirt)

6:22 Ollie's shoe just touched me like that (shows me on the bottom)

6:25 I kinda had a crumb here so I went like that, momma I keep doing this (wiping nose)

6:30: doing things with blanket, almost wiped boogers out of nose, keep doing this (wiping nose), I keep doing this (touching shirt), I'm so itchy,

6:37: I'm putting my feet on the table, is it okay if I put my feet on the table? Momma I did this (wiping shirt on mouth) almost got boogers and I keep doing this and this, moving shirt around

6:41 momma I keep doing this (showed me her feet) I keep tipping this badly of cars with my toe

6:45 I keep stepping on this dinosaur, I had a crumb in my mouth and I just ate it or it fell on the floor and I was doing this (scratching the sides of the mouth/face)
6:49 I was doing this (showing me her fork on the edge of the plate) and it may have touched the table, when I was doing this (holding plate) I got syrup on my fingers

6:50 momma I need milk and when I was waking back I was waking back like this, Momma I just kicked the balloon like that

7:02 I just stepped in water and I'm wiping my toe on the floor, I'm wiping my hands like this,

7:13 ever since mrs minor said keep the word "stupid" in the box it keeps popping into my head and I want to let it out

7:19 I think a little spit may have gotten in the book

7:24 for some reason the word dum dum is in my head and I can't get it out, every time I say a sentence in my head it ends in dumb dumb and I don't know why
For some reason at school I wanted to cry. (I asked why) and she said bc she felt bad that I'd didn't know who called (she tried to call daddy from school to wish a happy bday but called me on accident and hung up)

When I said thank ou you it ended In Dumb dimb

I don't know why that word is in my head

Those words are taking over my body

I don't feel good

[aba]

DD also does not have any tics. However, I hear a lot of sensory-related issues in what your daughter is saying, in addition to the obvious obsessiveness of it. The licking, kicking, wiping and scratching, rubbing -- that's all sensory stuff. Sensory issues are a big part of DD's overall picture.

 

During a flare, our DD says a lot of the same wierd things that yours is saying. Like she has to "confess" everything that enters her head. And correct herself when she mispronounces, etc. Just thoughts that she obviously cannot control.

 

I would definitely get bw done as soon as you can. It's very good that you are on top of this early. That's really in your favor.

[putting together the piece]

Yes, I am sorry it sounds like your dd is entering the PANDAS world. Please get her to a PANDAS/PANS knowledgable doc asap. She cannot help anything that she is saying or doing. The faster you get her help the better off she will be in the long run do not delay.

[pr40]

our kids had fixations -- i.e. thoughts, feelings, behaviors they could not change or put out of their mind.

that was their first symptom. then symptoms changed, evolved sort of, and two years later we saw classical tics in ds. dd was a bit different.

as you wait to get pandas apt, try to find strategies to cope with fixations. externalizing them, as in put that bad (reoccurring) thought in the basket and throw it away. that is dawn huebbner's advice. book title is What to Do When Your
Brain Gets Stuck:

[riffleshell]

Sounds like pretty classic PANDAS to me. Agree with the others--get to knowledgeable doctor ASAP. Early treatment makes a huge difference.

 

While you are waiting: feel free to try supplements and diet modifications as this is a tad bit of trial and error anyway. My PANDAS doc seems to recommend turmeric + n-acetyl cysteine to most of his patients. Huge improvement over here on those. Also many pandas folks recommend fish oil, vitamin C, vitamin D, magnesium and other supplements as well. Many. many people report great results with a gluten free or paleo diet -- I've never quite made that happen but we do try to eat anti-inflammatory foods in other ways. Not every kid reacts the same way to the same supplements or diet changes, so introduce changes one at a time and track the response.

 

Good luck!

[MaryAW]

Ibuprofen! It will help with the inflammation in the brain. It helped us so much until we could get to see a PANS doc. We did max dose 2x a day.

 

Confessions are a compulsion! This is exactly how our DD started (she was 7 1/2 when her PANS broke). The more she does it, the more she'll need to do it. CBT helped our DD, as did the book pr40 mentioned - EXCELLENT! Amazon has it.

 

With the confessing, if she starts saying a lot at once, I would say, okay just one more thing and then we're going to do... and then find something to distract her. Distraction is key. We used the iPad a lot.

[Q_is_my_world]

Thank you all so much. I'm sure you remember when the symptoms first showed up in your children...confusion, sadness, despair. That's where we're at. And we're desperate.

 

I'm kind of hoping it is PANDAS because at least we'd have a target to shoot at. Our pediatrician talked to our Pediatric Neurologist (Dr. Melanie Alarcio) who specializes in PANDAS and got her to agree to move our appointment up 2 weeks. We will be seeing her now on March 12th.

Last night was a lot more about wanting to say, "crap, doodoo, stupid, dumb", etc.). Almost manic. Poor girl.

I purchased the book referenced above at B&N and today we'll pick up some Animal Parade Kids Immune Booster chewables (turmeric) and Buddy Bear Digest chewables (n-acetyl).

 

We had bloodwork done and Strep swab done last night at the hospital. Strep was negative and the only level of concern was that her thyroid numbers were outside of the lines. When we meet with the PANDAS doc on the 12th she'll want to do bw so we can follow up then.

 

Please keep suggestions coming and know that we really appreciate your support. Your experiences and that you share them are invaluable to two scared parents and one scared kid.

[aba]

Please keep us posted. Everyone's story is helpful to those of us still muddling thru it all.

[pr40]

just one note on CBT -- the book I recommended above is useful BUT you may not see great results during such a bad exacerbation. I mentioned it just to give you some idea how you can try to cope as you are waiting to start the treatment. CBT is more helpful when kids are not in an exacerbation.

[kmacdonald34]

We are still relatively new in the PANS journey as well. My daughter changed into a totally different kid on Christmas Eve and I remember how scared we were and at times still are. We just met with 2 PANDAS/PANS specialists over the last few weeks and they have been very helpful. She did not test positive for strep which is why the dr. gave our daughter the PANS diagnosis. We are currently on the 3rd week of antibiotics. We saw improvement after 2 weeks but she got a cold again and regressed a bit. We think her PANS might be based on respiratory illnesses . I agree with pr40 that CBT does not work when things are really bad. I know it would not have helped a bit with her then and now she is still resistant as well when things are tough. We have put it on the back burner for a bit while we got the medical sorted out. Good luck and hang in there!

[aba]

There is another book that is mentioned on these forums that we had, The Explosive Child by Ross Greene.

 

It might be a great book for NT children. However, when we are dealing with a PANS flare, it is useless. And when she is not flaring, we don't need it .

[Q_is_my_world]

 

Edited March 9, 2015 by Q_is_my_world

[MaryAW]

Any luck with the ibuprofen? For us it was a very quick improvement.

 

Also, Nordic Natural Omega 3's Ultimate Omega Juniors were very helpful. Omega 3's are an anti-inflammatory - IF she will swallow a pill. Give her a reward for doing it. My DD responds to rewards very favorably!

 

Lots of sympathy My husband and I felt like we entered the Twilight Zone when this all started. That's how you know it is PANS. So sudden and so drastic.

[aba]

We have to be very careful of salicylates, even natural ones, because they exacerbate her behavior. Therefore, we stay away from strongly fruit-flavored supplements, which you find a LOT in products for kids.

 

Also, we give DD Nordic Naturals ProEFA Lemon Flavor, 1000 mg, 180 gels -- one per day (1000 mg). She actually CHEWS them, as she can't swallow a pill. (This fascinates me since she is so picky about what she will and won't put in her mouth!) But Nordic Naturals is the best for disguising the "fish" taste. And this product is a fraction of the cost of ones marketed specifically for children.

[Q_is_my_world]

Day 14 of her augmentin. Day 2 of ibuprofen and she's been on the immunity booster and a couple other supplements for a few days. No improvement. No major worsening though, for which we are grateful.

I am so grateful that this board is here and so grateful for the internet in general. When I started looking for an answer to why my perfect little angel daughter was going crazy in front of me, I searched "Sudden OCD". PANDAS came right up. Again, I'm not sure that is what we're dealing with (there is a slight chance there are some thyroid issues), but with this occuring during the same timeframe as the strep infection it is really looking that way. Imagine what parents would have to have gone through without the internet. So I wanted to thank all of you for your posts and support.

We meet with the PANDAS neuro on Thursday. I'll update at that time.