PANDAS/PANS? Sudden onset anxiety in 7yr old boy...

[Noreen Claire]

Anyone have experience with Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcus (PANDAS) or Pediatric Acute Onset Neuropsychiatric Syndrome (PANS)?

 

My 7yr old has previously had two 'bouts' of anxiety, lasting a few weeks, were he suddenly is deathly afraid of being separated/left alone from one or both of us. He will follow us around the house, constantly check that we are still there, and call out to us frequently. If left alone for a few moments (like if I go downstairs to do laundry), he will lose it completely, screaming for us and running around frantically trying to find us. He won't be able to sleep without the lights on. After this slowly passes (one to two weeks), he will go through a period of time (a few days to a week) where he gets up every 2-10 minutes for an hour or so after being put to bed where he complains that he needs to urinate again... And again... And again..., until he finally falls asleep. That passes too, and then he's my normal kid again.

 

This has happened twice previously in the last 2 years. This time (the third time), I though he was out of the woods and suddenly he is constantly worried about being poisoned, being fed something that he is allergic to, about dying of some rare mosquito-borne disease, or some other horrible thing (fire/flood/whatever) happening to the house. He's also been very moody and flies into a screaming rage for the smallest of things. He can also seem completely sweet and normal for stretches of time.

 

I googled "sudden onset anxiety in a child" and got lots of hits on PANDAS/PANS. Anyone been there, done that and can offer advice? I'm going to call tomorrow and make an appointment to see his pediatrician next week. I'm not expecting her to have heard of it either, but will ask her to do the swab for strep, just in case. What else?

[ktgrok]

Is there a chance a UTI can cause PANDAS? Just wondering if that would go along with the frequent urination. It definitely sounds weird, and you need to keep looking for answers. Hugs and prayers. 

[Noreen Claire]

Is there a chance a UTI can cause PANDAS? Just wondering if that would go along with the frequent urination.

 

That's the weird thing about it - he doesn't 'need' to go that frequently during the day. It only happens at bedtime. I think it's an anxiety thing, but I'm not totally sure.

[wapiti]

What else to do will depend on how receptive and/or how familiar your ped is.  Note that it is still very controversial in some geographic locations.  I think the simplest way to describe it is rheumatic fever of the brain.  Ultimately, I strongly suggest trying to find a PANDAS specialist, which is not easy to do and when you do find one, they are often booked well out.  (There is a clinic at Stanford but they only take local patients and are booked like 9 months out, etc.)  There are a variety of different specialties and who to see will depend on where you live.  There is a support forum here.

 

Beyond a swab, if your ped is willing to do some bloodwork, strep titers (there are two) would be a bare-bones start.  I'd also like IgE/IgM/IgG levels and IgG subclasses, as it is not unusual for an immune abnormality to be present, and if that turned out to be the case, I'd see an immunologist sooner rather than later.  Note that other infections can cause problems though there is yet more controversy (mycoplasma, lyme, etc.).  See e.g. this article laying out some testing, though it's a couple years old.

 

The odd, frequent urge for urination at bedtime is fairly specific to PANDAS, as far as I understand, and is not only due to OCD, though that can get wrapped up into it.  FWIW, I know one person who had the frequent urge problem at different times of the day as well.  While an ordinary UTI was ruled out in that case, it would not surprise me at all if there were some germs or microbiome imbalance of some kind that led to the urge.  (Speaking of which, ruling out a UTI is something easy enough for the ped to do, so you might as well ask, just to cover that base.)

[Denisemomof4]

I just want to encourage you to keep plugging on with doctors until you get the answer you know is right. My daughter has Lymes and doctors kept telling me she was fine when they couldn't find anything wrong. Then they kept telling her she was depressed. One doctor questioned anorexia. This enraged me because my daughter couldn't stop eating and yet looked skeletal! I was told ahe had a high metabolism. This was a serious concern of mine for years!

 

Your aon's symptoms are heartbreaking. He must be so terrified. Don't get discouraged if you don't get answers quickly, just trust your gut and keep plugging along. It took us 4.5 years and 33 doctors before we got our answer (and *I* was the one who insisted they check for Lymes!) She is thriving now.

[poppy]

I would definitely talk to a pediatrician to rule out other issues. I asked mine about PANDAs and she said she was very skeptical about it with a fairly convincing argument that I cannot, unfortunately, remember 2 years later. She did send me to two specialists and down a path to a viable treatment .

[Kerileanne99]

For us the only way to convince our receptive but somewhat skeptical pediatrician was a combination of things I ordered a slew of home strep tests, kept a journal, and took videos. The key factor was recording the neurological issues that resulted. For my dd6, we see a shocking increase in anxiety, night terrors, OCD, AND neuro dysfuction. When you see he is having an issue, swab him for Strep...and get a handwriting sample. This was a key factor I our case. My daughter has beautiful handwriting, both manuscript and cursive. During a PANDAS/PANS episosode there is a shocking difference.

 

I am so sorry. This is an awful, horrible position to be in. It was actually through this forum (specifically wonderfully helpful people like Wapiti that were key in even figuring out what was happening! I hope you will have good luck with your pediatrician!

[ktgrok]

Getting a video of him acting the way you describe would be a very good idea, so the doctor can't blow it off as "just a little anxious" or normal anxiety. 

[swarmie]

I have a dd who had been diagnosed with PITANDS several years ago by a pediatric neurologist in New Jersey who specializes in PANDAS/PITANDS; his name is Dr. Trifiletti.  We were living in Wilmore, KY, at the time.  We chose Dr. Trifiletti because he was willing to treat her without actually stepping foot into his clinic.  After a phone interview, he decided to immediately prescribe her an antibiotic and to order a series of blood tests (Strep had already been ruled out, so he was looking for another bacterial infection associated with sudden onset of OCD.)  I still have a copy of the blood tests he ordered, but unfortunately I cannot read it.  Dr. T. ultimately discovered she was infected with mycoplasma; her bout was asymptomatic.  The antibiotic Dr. T. prescribed--clarithromycin--elicited immediate changes in my dd's behavior.   Within a matter of a week or less, she went from showing severe/profound OCD to none.  But when we took her off the antibiotic (after 3 months or so), she very quickly went back to showing OCD (plus frequent urination and emotional lability).  Dr. T. had said mycoplasma was very difficult to kill, so it took approx. 6 months before the antibiotic had done its job of killing off the bacteria.  Once the mycoplasma was gone, my dd was OCD-free without the antibiotic.  She was back to her old self; it was as if nothing had ever happened.

 

Before we went to Dr. T., we had attempted to rule out a medical cause via the local doctor route.  Her pediatrician she saw regularly refused to see her--said we needed to see a child psychologist or psychiatrist instead.  You can imagine how I felt about that.  Well, anyhow, I managed to find a pediatrician who was willing to at least admit her to the hospital to run a gamut of tests, including a head CT and a psychological assessment.  Unfortunately, her medical team knew very little about PITANDS, let alone how to diagnose and treat it.  They couldn't find anything wrong.  The psychology team (there were at least two psychologists who interviewed/tested her) agreed she didn't show classic onset of OCD.  The head of the psychology depart. (one of the professionals who had interviewed my dd) did not believe she had PITANDS either because she did not show signs of Tourette's Syndrome.  (Despite the medical articles I had shown her, she did not believe that OCD was associated with PITANDS simply because she had never seen it in patients with PANDAS she had observed during her training...Sigh.)   But I refused to give up.  So, through the help of a friend, I was able to find Dr. T. 

 

I do want to note a few more things.  My dd had always been healthy.  We were not frequent visitors to the pediatrician's office.  Dr. T. said my dd had a very strong immune system, which he found encouraging, meaning that she may not need to stay on an antibiotic indefinitely due to PITANDS.  And she didn't--only long enough to kill off the mycoplasma. But after about 5 years (at age 11), our dd did start to show signs of classic onset OCD.   She is only mildly affected, however, and can function without treatment, but we treat her anyway, with Inositol.  (Why not?)

 

I hope this helps :-).  Whatever you do, don't give up until you have a diagnosis!  And I'd rule out PITANDS in your case, given your description of his behaviors.  Good luck!

Edited August 7, 2016 by swarmie

[Noreen Claire]

I have a dd who had been diagnosed with PITANDS several years ago by a pediatric neurologist in New Jersey who specializes in PANDAS/PITANDS; his name is Dr. Trifiletti.  We were living in Wilmore, KY, at the time.  We chose Dr. Trifiletti because he was willing to treat her without actually stepping foot into his clinic.  After a phone interview, he decided to immediately prescribe her an antibiotic and to order a series of blood tests (Strep had already been ruled out, so he was looking for another bacterial infection associated with sudden onset of OCD.)  I still have a copy of the blood tests he ordered, but unfortunately I cannot read it.  Dr. T. ultimately discovered she was infected with mycoplasma; her bout was asymptomatic.  The antibiotic Dr. T. prescribed--clarithromycin--elicited immediate changes in my dd's behavior.   Within a matter of a week or less, she went from showing severe/profound OCD to none.  But when we took her off the antibiotic (after 3 months or so), she very quickly went back to showing OCD (plus frequent urination and emotional lability).  Dr. T. had said mycoplasma was very difficult to kill, so it took approx. 6 months before the antibiotic had done its job of killing off the bacteria.  Once the mycoplasma was gone, my dd was OCD-free without the antibiotic.  She was back to her old self; it was as if nothing had ever happened.

 

Before we went to Dr. T., we had attempted to rule out a medical cause via the local doctor route.  Her pediatrician she saw regularly refused to see her--said we needed to see a child psychologist or psychiatrist instead.  You can imagine how I felt about that.  Well, anyhow, I managed to find a pediatrician who was willing to at least admit her to the hospital to run a gamut of tests, including a head CT and a psychological assessment.  Unfortunately, her medical team knew very little about PITANDS, let alone how to diagnose and treat it.  They couldn't find anything wrong.  The psychology team (there were at least two psychologists who interviewed/tested her) agreed she didn't show classic onset of OCD.  The head of the psychology depart. (one of the professionals who had interviewed my dd) did not believe she had PITANDS either because she did not show signs of Tourette's Syndrome.  (Despite the medical articles I had shown her, she did not believe that OCD was associated with PITANDS simply because she had never seen it in patients with PANDAS she had observed during her training...Sigh.)   But I refused to give up.  So, through the help of a friend, I was able to find Dr. T. 

 

I do want to note a few more things.  My dd had always been healthy.  We were not frequent visitors to the pediatrician's office.  Dr. T. said my dd had a very strong immune system, which he found encouraging, meaning that she may not need to stay on an antibiotic indefinitely due to PITANDS.  And she didn't--only long enough to kill off the mycoplasma. But after about 5 years (at age 11), our dd did start to show signs of classic onset OCD.   She is only mildly affected, however, and can function without treatment, but we treat her anyway, with Inositol.  (Why not?)

 

I hope this helps :-).  Whatever you do, don't give up until you have a diagnosis!  And I'd rule out PITANDS in your case, given your description of his behaviors.  Good luck!

 

Thanks for the info. I hadn't come across PITANDS; I will definitely check it out.

 

We were seen in the office yesterday (Sunday), and she took a strep culture. We had blood drawn this morning for a complete work-up plus titers. (She's a horrible stick for taking blood anyway and, with his sudden behavior issues, I wasn't going to chance her not getting the needle in on the first try. We drove to the Children's Hospital satellite location and had it drawn by a professional.) Now we wait....and research.

[Noreen Claire]

UPDATE! So, the strep culture was positive and he has started on penicillin. Crossing my fingers that this helps!

 

Still waiting for blood test results. Pedi said that she will culture everyone in the house in a few weeks to see if any of us are carriers, and I have a parent meeting with the office's child psychologist in a few weeks to talk about cognitive behavior therapy.

[ktgrok]

So glad you might have an answer! Did he have any other symptoms of strep?

[Nemom]

One round of abx may calm down the symptoms but it will likely not get rid of the infection long term. Unfortunately, there is not an easy fix for PANDAS. Most kids are on long term abx among other things. Please visit the forum that Wapiti linked above. A lot of great info and help available from knowledgable parents.

[Noreen Claire]

So glad you might have an answer! Did he have any other symptoms of strep?

 

No, he had no indication he had an infection at all. Well, except for the behavioral stuff, that is.

[Noreen Claire]

One round of abx may calm down the symptoms but it will likely not get rid of the infection long term. Unfortunately, there is not an easy fix for PANDAS. Most kids are on long term abx among other things. Please visit the forum that Wapiti linked above. A lot of great info and help available from knowledgable parents.

 

I've been reading through the forum that was linked above and trying to get my head around next steps, thanks. One step at a time.

Edited August 9, 2016 by Noreen Claire

[MamaStar]

Hi... I'm new to this site...I have an 11 year old that started with sudden, intense anxiety and what seem like panic attacks (he does not have panic attack symptoms like heavy breathing, sweating, etc., it's more of all of a sudden he thinks he's in a dream, he feels fake, everything looks different.. it's a derealization) he cries, he yells, he kicks, he screams, and then he is completely exhausted and will sleep... sometimes this goes on all day, sometimes days in a row, some days not as much and we think he's gonna be ok... he is sleeping a lot, not eating, so anxious and scared, can't go to school, can't focus, they get worse and more frequent as time goes on... when he is awake he is obsessed about it happening and is constantly asking if this is real, is he really here, he is sensitive to light, his head hurts (maybe from the screaming and crying) he is not himself and has basically stopped functioning as the child he once was... 2 hospital visits and a week stay (first ER said see a psychiatrist) (second thought temporal lobe seizures but ruled that out) his blood work came back with a high TITER.. still sent me home with nothing except "come back if it continues" ... I stumbled upon PANS/PANDAS and actually know someone that has a child with this... she has given me so many pointers and who to call or see... my Dr. basically told me that some nuerologists don't believe this exists but wants to readmit him for a spinal tap to rule out other illnesses ... im just looking for any suggestions, ideas, advice? He does not have tics or the OCD like many other kids (it's just really being obsessed about these events happening) it's more the over top anxiety and fear (which is what causes these derealization events) and the sudden onset of this and complete change of my child, with the high titer that has me wondering... oh and he has not had strep recently but has had multiple times when he was younger .... lots of soar throats and colds and has seasonal allergies (takes zrytec daily)

[wapiti]

Hi... I'm new to this site.

 

There are numerous PANS/PANDAS Facebook groups that you might join.  Here are a few articles in case they may help:

 

http://ndnr.com/autoimmuneallergy-medicine/elucidating-pandas/

 

http://discovermagazine.com/2017/april-2017/hidden-invaders

 

http://www.mdedge.com/clinicalpsychiatrynews/article/131114/pediatrics/antibiotics-have-role-pans-even-no-infection

 

(high titer for what, specifically?)

Edited April 18, 2017 by wapiti

[MamaStar]

High TITER for streptococcal primary is what my hospital paperwork says??

[GoodGrief]

MamaStar, investigate the possibility of an autoimmune encephalitis (like in the _Brain on Fire_ book.) A friend's 12 year old experienced this, and it was sudden onset of psych symptoms. It is not very common, so read about it first so you know what testing needs to be done.

 

Editing to add that the local hospital did not test my friend's child correctly. She eventually needed help from the Mayo Clinic. Don't be afraid to be pushy.

Edited April 18, 2017 by Gr8lander

[MamaStar]

Hive Mind Larvae, thank you I will check it out!

[wapiti]

High TITER for streptococcal primary is what my hospital paperwork says??

 

For what it's worth, there is more than one type of strep titer.  The two most commonly tested are ASO (antistreptolysin antibody) and anti-DNase B.  They should be checked again later to see whether they are falling - this can take quite some time.