Is there such a thing as non-OCD or tics P.A.N.D.A.S.?

[riffleshell]

Sunday, October 13 my son and I were diagnosed with Step. He was started on a 10 day treatment of Cephalexin.

 

Friday, October 18th things started to get tough with his behavior. My son is normally is normally an incredibly sweet kid who gets along great with his peers. But on Friday he had a total meltdown that resulted in him screaming at all of his friends. Since then we've gotten three notes home from his his teachers about his behavior. He is in 5th grade and has absolutely *never* had a note home before.

 

I don't paint an overly rosy picture. He has had some academic problems in school in the past -- especially with writing -- and possibly has ADHD but I've never wanted to medicate him, nor have his teachers ever suggested it.

 

Last week, we had a beginning-of-the year conference with his teacher and she said that a lot of the writing difficulties she'd seen in the past had really improved and that she thought he was doing great. Today, she sent me an email saying we should get start the process of getting a 504 plan for him. The slide has been that dramatic in one week to the day.

 

He's also developed a very serious fear of wolves. (There aren't any wolves where we live.)

 

He's still his same sweet self most of the time. But I'm very, very concerned about him and I don't know what to do. He doesn't have any real tics or OCD, however, so I don't know if it is P.A.N.D.A.S. exactly.

 

[smartyjones]

I would encourage you to read the pinned notices at the top of this forum on how OCD presents in children. my son had 'sudden onset' - although now I know there were other subtle symptoms before - at age 4.5. it was mainly wild, wacky obnoxious behaviors and school phobia and refusal. we saw a behavioral therapist who met with him a couple of times. at first, she thought he was presenting Asperger like behavior - and then he would do something to negate that thought. on visit 3, I was discussing some obnoxious things he'd done. I don't think i'll ever forget her words - "what you are describing sounds like OCD to me. . . but he's awfully young". I remember thinking, that doesn't seem like any OCD that I've ever heard of.

 

we had titers drawn -- ASO was 898; he had a positive strep culture although no typical signs of strep and once he got on the correct abx for him, he had 100% remission. (although he backslide when off it)

 

I also claimed I saw rapid eye blinking only one time for about 2 minutes.

 

as I've learned more about OCD, I see how much of his behaviors are likely OCD. mainly in the 'just right' sense that if something is not just right in his mind, it is troublesome. this could be for your son, that his friends were doing something 'wrong' or out of what his mind would accept and that is why he yelled.

 

also, there are things that he would do that could be considered tics -- but only to a very trained eye -- likely a pandas doc.

 

so -- to me, what you describe very much sounds like pandas that we have experienced.

 

my son is quite healthy today. we see an integrative MD and most of his journey has been with homeopathic medicine. still -- one of my biggest regrets is that initially, we didn't have him on abx long enough. after a horrible 5 day course of azith -- he had 100% remission with 30 days Keflex and then went off and backslide. he went back on, but not to the full dose and did not see the same results. it was good in that it sent us looking for other infections that he did have. but - knowing what I know now - I would have kept him on that initial Keflex much longer to have time to learn more and to develop plans A, B and C.

 

good luck.

[PowPow]

One of our daughters first presented with the most bizarre fears. She was very suddenly afraid of windows. She became very difficult and had many tantrums. The only reason we considered pandas was because we had other daughters who had been affected with some more traditional OCD presentation. After antibiotics and steroids all the fears have remitted.

honestly, your description sounds like a pretty open and shut case. I hope you can find help soon. If you post where you live you may be able to get more personalized assistance.

Edited October 26, 2013 by PowPow

[Hopeny]

I want to echo the comment about OCD presenting in different ways. My daughter was seeing both a psychologist and a psychiatrist when the avalanche of symptoms was in force, before we figured out going on. When I started learning about PANDAS, and after the Lyme dx, I kept asking the psychiatrist do you think this is OCD? She said no. When we had our first LLMD visit, (not a PANDAS expert, only Lyme & TBI's) he asked, does she have any other compulsions besides skin picking? The lightbulb went off for me.

Neither the psychologist nor psychiatrist had identified it as a compulsion but it certainly was. Then we realized the fears and other thoughts, suicidality for example, were actually obsessions. Then my sister read me the OCD definition from the DSM (she is a therapist) and I realized it was actually OCD.

I think my first post on this board was asking the very same question. My daughter never had tics either.

I am not a doctor or psychologist but the fear of wolves sounds obsessive to me.

My advice would be not to take the word of any one doctor, no one has all the answers, and not to put any blind faith in any provider.

[Hopeny]

I know there are mixed opinions on the DSM but here is the definition. Look at 1 and 2.

A. Either obsessions or compulsions:

Obsessions as defined by (1), (2), (3), and (4):

1. recurrent and persistent thoughts, impulses, or images that are experienced, at some time during the disturbance, as intrusive and inappropriate and that cause marked anxiety or distress

2. the thoughts, impulses, or images are not simply excessive worries about real-life problems

3. the person attempts to ignore or suppress such thoughts, impulses, or images, or to neutralize them with some other thought or action

4. the person recognizes that the obsessional thoughts, impulses, or images are a product of his or her own mind (not imposed from without as in thought insertion)

Compulsions as defined by (1) and (2):

1. Repetitive behaviors (e.g., hand washing, ordering, checking) or mental acts (e.g., praying, counting, repeating words silently) that the person feels driven to perform in response to an obsession, or according to rules that must be applied rigidly

2. The behaviors or mental acts are aimed at preventing or reducing distress or preventing some dreaded event or situation; however, these behaviors or mental acts either are not connected in a realistic way with what they are designed to neutralize or prevent or are clearly excessive

B. At some point during the course of the disorder, the person has recognized that the obsessions or compulsions are excessive or unreasonable. Note: This does not apply to children.

C. The obsessions or compulsions cause marked distress, are time consuming (take more than 1 hour a day), or significantly interfere with the person’s normal routine, occupational (or academic) functioning, or usual social activities or relationships.

D. If another Axis I disorder is present, the content of the obsessions or compulsions is not restricted to it (e.g., preoccupation with food in the presence of an Eating Disorder; hair pulling in the presence of Trichotillomania; concern with appearance in the presence of Body Dysmorphic Disorder; preoccupation with drugs in the presence of a Substance Use Disorder; preoccupation with having a serious illness in the presence of Hypochondriasis; preoccupation with sexual urges or fantasies in the presence of a Paraphilia; or guilty ruminations in the presence of Major Depressive Disorder).

E. The disturbance is not due to the direct physiological effects of a substance (e.g., a drug of abuse, a medication) or a general medical condition.

[beeskneesmommy]

OCD looks different in kids sometimes. Angry outbusts, aggitation, fear and meltdowns are not simply behavioral problems, but the child's response to what is upsetting. My son's OCD began before the tics, but I did not recognize it because he was so young. Anxiety presenting in the forem of unfounded fear of wolves sounds pretty OCD, which doesn't always come in the form of actions, rather, getting "stuck" on certain ideas/thoughts. I would certainly persue your concern of PANDAS/PANS, especially since it sounds like the onset was pretty sudden and coincided w/Strep.

[riffleshell]

Thank you all so much for your responses! We live in Austin, Texas. If anyone knows a doctor who has seen this before. I like his current pediatrician very much but I have a feeling he is going to give me the crazy eye when I go in there are start talking about PANDAS.

[nicklemama]

Here's another be sure you know what OCD in children looks like. I didn't think my son had OCD either. I was completely wrong. Read Freeing Your Child of Obseesive Compulsive Disorder by Tamar Chansky. Great descriptions of OCD. I didn't read al the replies but I'd bet a lot of money your son has OCD.

[dut]

While I agree totally that OCD can present subtly and variedly, I also think you can have PANDAS without any OCD.

 

I've got 2 kids with PANDAS and while one has a classic presentation with tics and OCD, my other child will show minor OCD or anxiety symptoms only rarely during flares. During the majority of his flares, he will present with hyper/aggressive/impulsive symptoms. For him, it looks as if someone has switched a motor on inside him. If we had him evaluated during a flare, he would probably be dxd ADHD.

 

At these times I've hunted for the underlying OCD or anxiety that might be driving these behaviors but during many of his flares they just aren't there and he can truly have non OCD or tic exacerbations. If it weren't for his sister, I suspect we'd never have suspected PANDAS in the first place but he responds well to abx, ibuprofen and, when necessary, steroids.

[Mayzoo]

Thank you all so much for your responses! We live in Austin, Texas. If anyone knows a doctor who has seen this before. I like his current pediatrician very much but I have a feeling he is going to give me the crazy eye when I go in there are start talking about PANDAS.

 

• *Dr. Sesgagiri Rao (Leading PANDAS Physician)

  Immunologist

  972-964-7374

  Plano, TX

  will treat more complicated cases involving PANDAS and Autism

• *Dr. Bruce Russell (Leading PANDAS Physician)

  Pediatrician

  391-794-1930

  Port Aransas, TX

  will treat more complicated cases involving PANDAS and Austism

• Dr. Shreenath Doctor

  Neuropsychiatry and Clinical Pharmacology

  713-524-3399

  Houston, Texas

[pr40]

Our kids did not have classic OCD or tics. there are other PANDAS symptoms that are also common, including frequent urination, regression, and separation anxity. Our kids cicled through many, many different symptoms. As thename suggests, PANDAS can describe any nuropsychological symptom that is triggered by an infection.

[Mommy2MCL]

We are new here and in Texas too... We haven't seen a dr. but are pursuing getting an appointment with Dr. Dr. I don't think my daughter presents very highly with OCD too. She did have the tics but what we have seen is the total meltdowns. Which I believe refer to emotional liability (that may be the wrong term)

 

She is normally very well adjusted but several times since all of this started in April she would break down in an uncontrollable fit that would last around an hour. So while OCD is a big one there are others that could point to PANDAS too.

[riffleshell]

Thanks so much to you all!

 

I saw my son's regular pediatrician today who took me very seriously, but who essentially told me that he really did not know enough about PANDAS to make a diagnosis one way or the other. (I appreciated his honesty.) He recommended a specialist and said that he would pull strings to get me in the door quickly. He seemed to think this person had a lot of experience with PANDAS.

 

All the specialists listed above are 4 hours away. I really hope I can figure something out in Austin.

[pr40]

did you presnt PANDAS cheklist to your Dr?

be careful, many drs say they belive in PANDAs in they do in a sort of abstract way but don't want to treat it with abx unless there is an ongoing infection they can document. ANd they are really of limited use to you.

So, you may want to ask not if someone belives in PANDAS, it is hard not to given how it presents itself, but how they treat it. From their response, you'll know if that is a right dr for you.

Edited October 30, 2013 by pr40

[EAMom]

Hi, I haven't read all the responses...by definition, a child needs OCD or tics for PANDAS, but in reality, I think that is a somewhat arbitrary delineation.

 

My dd's first PANDAS symptoms were rages/tantrums, "difficult behavior", bossiness, emotional lability...only as things progressed did we actually see that there was OCD.

 

Also, I think the ADHD is a big red flag...the fear of wolves and handwriting issues are also suspicious.

 

And, many kids keep their OCD (if they have it) "hidden" or it isn't obvious to the parent...it may not present as the typical "handwashing" that we think of when one says OCD. In fact, my dd went for 3 weeks (this was a long time ago) where she refused to wash her hands!

 

You could try dosing him with Advil 3x daily for a few days and see if you notice a difference in behavior (advil helps some PANDAS kids).

I would also STRONGLY recommend (since it's been about a week since you finished antibiotics) that you throat culture your son to make sure the strep actually cleared with the Cephalexin. Also, throat culture family members to make sure there isn't "stealth" or "asymptomatic" strep in the household that could be serving a source of reinfection or even just stimulating his immune system. (PANDAS kids can react to strep in others, even if they are on antibiotics). This is something that you can do while waiting to see a specialist...also your kid is positive you have a good reason to try a stronger antibiotic.

Edited October 30, 2013 by EAMom