Would you suspect PANDAS? (see our timeline)

[dsnow777]

A bit of background on our daughter.

 

Each year for the past 3-4 years she's had a mild vocal hum tics. ALWAYS during and after becoming ill. Usually after fever, etc.

 

This is what's going on so far for us.

 

We took her to a psychiatrist last week and she's been diagnosed with Generalized Anxiety and Separation Anxiety.

 

But now that I've pieced together the timeline. Something is definitely out of whack.

 

We have had the blood test already for ASO, CBC. We didn't see the #'s but our pediatrician just said "everything looks great on the blood test" and told us to see a psychiatrist.

 

TIMELINE:

9/4: First day of school. 1st grade.

9/10: Daughter acting off, fell asleep at 5:30PM (8pm is usual bed time)and woke up in the middle of the night with a fever. First signs of mild hum vocal tics started within a couple of days near 9/10.

9/11 & 9/12: Daughter home sick from school.

9/16: Horrible uncontrollable bad behavior. Anger, rage, defiance, crying. Constantly hurting her sister. Totally out of character. Never had experienced this type of behavior in her. Pooped her pants (pooped her pants a few times over the next week too, NEVER happened before).

9/10 through 9/29: Very mild vocal tics (soft hums)

9/26: Daughter woke up feeling sick. We sent her to school, she felt sick all day, ended up throwing up twice at school. She ended up in nurses office. Nobody from school called us to come pick her up.

9/27 & 9/28: Daughter Missed school, sick.

9/30: Daughter Lethargic all dayThrew up again in the middle of the night, was feverish. (first time we started to hear the vocal tic develop into more of a grunt).

10/1: Missed school, sick

10/1: Grunting and humming vocal tics started in combo, very strong. Also noticed subtle eye tics during this week (rare but did notice her kind of looking side to side).

10/10: First note to teacher alerting her of vocal tics. More grunt type tics had become stronger.

10/14: Eye tics & Vocal Tics very strong. Very very bad day with emotional behavior and tics. Eye tics strong while watching TV.

10/18-10/21: Tics less frequent but still there. Vocal tics are now a hum, grunt, and throat clearing (all 3). On 10/21 the tics were very minimal.

10/22: Daughter wakes up sick again, nose full. Vocal tics pick up intensity again.

10/23: Vocal tics strong again and constant, nose full. Daughter sick. Full nose, coughing.

10/19-10/23 Range: Major rage/anger/crying. Almost always set off by her little sister such as little sister drawing on her papers, or accidentally hurting her/grabbing her. Rage/Anger is to extremes we have never seen. Screaming, spitting, etc. just completely loses it.

 

Separation anxiety is strong also.

 

I should also add that the Psychiatrist thinks her current classroom is too over the top for her. It is unstructured and she has recommended switching classrooms to a more structured environment with familiar faces to help with the anxiety. If that doesnt work she suggests a smaller school setting (maybe private). This is all great but looking back at the timeline with all the fevers and sickness and weird behaviors it seems like there might be more at play here. Or could it be that all of the sicknesses and tics are all stemmed from the classroom setting and anxiety (due to the timeline of starting right after school started). But yesterday our daughter actually asked to go back to school and say she likes it so we're so confused.

 

We mentioned to her current teacher that a boy next to her was constantly complaining to our daughter about her vocal tics and to please move her. She said she would and a week passed by and she still hadn't done anything. So we've kept her home since last Thursday until we can get her moved just to rule the class situation out.

 

OCD is not really an issue. She is persistant on things and gets upset if they don't go the way she wants but in no way is she doing OCD type behaviors such as counting or washing hands or anything like that. The other day some books fell at bedtime, I asked her to deal with it in the morning but she frantically insisted on putting them back to normal while crying uncontrollably, that would be the extent of the "OCD". Anger/Range getting mad at her sister like never before is the bigger behavioral change.

 

HELP

Edited October 23, 2012 by dsnow777

[pr40]

our daughter's behavior (anger and separation, rivalry with a younger sibling, and so on) was very similar except that she also had restless leg. all blood results were fine but she did have a documented strep two months before the onset on major symptoms.

When she started 250mg penicillin x2, all symptoms have subsided after 30 days. she is still on it. She is also taking 600mg NAC in the morning, and melatonin to sleep.

You may want to see a Pandas/pans specialist.

[beeskneesmommy]

If this is a sudden onset associated with being ill and there were no behavioral concerns previously, as you seem to indicate, get to a specialist right away. Other infections can cause the PANDAS response. One of these is Mycoplasma d/t walking pneumonia or other respiratory infections. There is a plethora of infections that can be the culprit, including Lyme, but I wouldn't necessarily go there right away with the pediatrician or psychiatrist, unless they are cooperative and willing to look at PANDAS as a possibility. This is why a specialist is necessary in order to order all of the appropriate tests. EVEN IF the Strep titres are normal, PANDAS is not ruled out. How old is she? OCD looks a little different in little kids. "Persistence" can also be the getting "stuck" part of OCD. My son began this way. What part of the country are you in?

[smartyjones]

We have had the blood test already for ASO, CBC. We didn't see the #'s but our pediatrician just said "everything looks great on the blood test" and told us to see a psychiatrist.

 

 

 

my greatest advice to you is 1 -- follow your gut and your thoughts as her mother and 2 -- get a big binder and a copy of ALL blood tests run - each and every one

 

 

and yes, it sounds pretty classic pandas or at least infection/illness induced to me. not to offend you, but that ped makes me mad!! at onset, our ped, said, "i think you'll find the behaviors and the strep are not related." he had sky high titers, a positive culture and sudden onset of behaviors. how could it NOT be related??!!

 

 

my ds does not have 'typical OCD' -- he was 4.5 at onset and had behaviors like you are describing. i now see anxiety and OCD on a continuum (i'm a terrible speller) and he certainly does live more down on the anxiety side -- however, in exacerbation, he slides down the range and i think a lot of upsets are 'just right' OCD that is not just right. and many things that involve brother -- what he did, what he said, how he moved, not eating until they take a bite at the same time. at first, we did not understand what was really setting it off -- it just seemed like wild fits -- however, it had a trigger and it was often something to do with brother not being or doing 'just right'.

Edited October 23, 2012 by smartyjones

[MomWithOCDSon]

I ALWAYS suspect PANDAS!

 

I'm only sort of joking. You might consider me the Oliver Stone (conspiracy theorist) of auto-immune origination of psychiatric/neurological behavior.

 

After our experience, I will ALWAYS consider and check for a medical basis for any unusual or increased behaviors in myself or my loved ones, and I will ALWAYS, when solicited (and sometimes even when not), advise someone facing similar circumstances to investigate and systematically rule out all potential medical bases for what they're seeing/experiencing before they accept a purely psychiatric treatment protocol. If necessary, seek out second and/or even third opinions. Trust no one implicitly.

 

All that melodrama and kidding aside, given your timeline (good journaling, incidently!), yes, I would suspect PANDAS/PANS in your DD. But now that you know my predisposition, you might want to take that with a grain of salt . . . .

[dsnow777]

Thanks everyone for the replies so far.

 

We are in Orange County, CA.

 

On another thread I found doctor Chitra Bhakta in Santa Ana but she is booked until Mid January.

http://www.ocimc.com

 

I'm not even sure if thats the right doctor to try or If I should go to a more PANDAS friendly pediatrician first.

 

I think Dr. Sears family might be good but not sure:

http://www.askdrsears.com/

[dsnow777]

I am going to setup a phone consult with Dr. T on recommendation from some other posts. Very eager to get some professional advice on this.

[Hopeny]

In a nutshell we started off with a Lyme dx for my DD8 in Jan of 2012, and made an appt with Dr B too as a check in the box for PANDAS because DD had an elevated ASO titer (by the time we got to him it was in May). She did not have tics or hit you over the head OCD, until you looked closely and realized she had numerous obsessions (one was wanting to die, ugh) and compulsions (ritualistic skin picking), perfection seeking etc. Psychiatrist at the time said she was not sure DD had OCD but thought she was depressed. She totally missed the boat. My sister read me the DSM criteria for OCD and I was like yep, got that etc. I originally thought OCD was hand washing etc but it turns out to manifest in multiple ways. I left Dr. B's office with two prescriptions, Augmentin and Biaxin, and while we have a long road with Lyme & Co, that was the day I started to get my daughter back. Thankfully due to the parents on this board, and not to the expert rheumatologist, psychiatrist and psychologist who misdiagnosed DD, I was able to have DD properly tested, evaluated and now in treatment with the right team of practicioners.

I have read too that uncontrolled bowels can be a Lyme symptom, IMO it sounds like you need a thorough workup, from a PANS specialist (seems like you have one now), a Lyme literate MD who sends the tests to the correct lab and knows how to interpret results, and maybe a DAN. I know Dr. Sears (the son) put a recent post up about PANDAS so it sounds like he would be a good resource for you.

I use the team approach because no one doctor has all the answers, and personally I will never put all my faith in one person again after the way my DD was totally misdiagnosed and has suffered needlessly because of one doctors ignorance/arrogance.

 

I was totally overwhelmed in the beginning but began to be able to wrap my head around all of it a couple of months - have faith you are on the right path and be open minded as to what the treatment and illnesses are. Wishing you the best.

[dsnow777]

Wishing you the best.

 

Great post, thanks!! Who is Dr. B?

[EAMom]

Thanks everyone for the replies so far.

 

We are in Orange County, CA.

 

On another thread I found doctor Chitra Bhakta in Santa Ana but she is booked until Mid January.

http://www.ocimc.com

 

I'm not even sure if thats the right doctor to try or If I should go to a more PANDAS friendly pediatrician first.

 

I think Dr. Sears family might be good but not sure:

http://www.askdrsears.com/

 

Hi, have you listened to this podcast with Dr. Bhakta? http://www.blogtalkradio.com/radiopandas/2012/10/18/triggers-treatments-and-triumph

 

Did your dd have any throat cultures done during these illnesses? fevers/vomiting times? I ask b/c my dd never had throat cultures done (until we demanded them--positive, sister was positive too)...all fevers/vomiting were presumed viral. It turns out they were likely undiagnosed strep. She also had low ASO/anti-dnase b strep titers despite positive cultures.

 

I would also rec strep throat culturing family members (check for carriers) and getting a current throat culture on your dd (if one not done recently).

 

I think your dd sounds like PANDAS. Ours first presented as rages/tantrums (OCD developed later, or I didn't know what OCD was in a 7 year old, not the usual handwashing). Some of her OCD was defiance/demanding behavior, things had to be a certain way, rages/tantrums ensued. We felt like we were walking on eggshells those first couple of months (before we learned of PANDAS) b/c I never knew what would set her off. She also had a lot of anxiety. Also, her sensory issues greatly increased.

 

I also wonder if the september illnesses were 1 long strep infection that never cleared? The oct stuffy nose coughing sounds like something else, but she may still have strep (get a culture) that never cleared on top of that.

Edited October 24, 2012 by EAMom

[minimaxwell]

So sorry, sounds like PANDAS/PANS to me. I have full confidence Dr Trifiletti will figure it out. Please keep us updated.

[AmySLP]

Did your daughter have any strep cultures done during this Time?

[dsnow777]

Did your daughter have any strep cultures done during this Time?

 

She had a blood test about 10 days ago. The strep was negative. Never had a throat culture though. The pediatrician never examined her to this date. He just dismissed the tic as a common thing kids do and coupled with the anxiety said to visit a psychiatrist.

[EAMom]

Did your daughter have any strep cultures done during this Time?

 

She had a blood test about 10 days ago. The strep was negative. Never had a throat culture though. The pediatrician never examined her to this date. He just dismissed the tic as a common thing kids do and coupled with the anxiety said to visit a psychiatrist.

 

You need throat cultures...do everyone in the household (including your pandas child). Blood tests (eg aso, anti-dnse b ) only need to be done if throat cultures are neg (or to get a baseline for interests sake). Blood work does not replace the need for a culture (which would tell you if there is a current/active colonization).

 

Also, I would rec. getting a repeat of labs (aso, anti-dnase b ) in 6-8 weeks to see if titers are rising (although it might be a little late). Unfortunately, what you really want is (if you are going to rely on strep titers) is a a baseline blood draw (at onset of symptoms) and then again 6-8 weeks later (to see if there is a rise). A single titer 2 mo. after onset of symptoms doesn't really tell you much. Also, even if your doc was on the ball (and got the 2 titers at the right time) a good percentage of kids with cultureable strep (and PANDAS) never get a titer rise (or if it rises, it still might now rise "enough" to get above the upper limit of normal).

 

Cultures aren't perfect either (could have a bad swab/miss the tonsils, or strep could be in the sinuses or elsewhere). But, really your doc should have done a strep culture when your kid had fevers, although I would still recommend doing them now (to make sure there isn't obvious cultureable strep).

 

Some parents will lie (if your ped refuses to culture) and go to urgent care, say the kid complained of a sore throat, or other symptoms and friends recently had strep...

Edited October 28, 2012 by EAMom