PANDAS - OCD

[eaccae]

Hi - I'm new here and was wondering how is PANDAS diagnosed and who does the diagnosing?

 

My DD (5) was hospitalized 3 years ago for a week due to an inflammed lymph node under her arm. It was the size of a plumb and when they were finally able to drain it - they found it FULL of the strep A scarlet fever bacteria. (She had tested negative on the throat culture although the rest of us tested positive - we ALL had the rash.)

 

Upon her release - she became a fictional character. For the next 9 months we were not allowed to call her by name - "she" was gone. Then one day, out of the blue, "she" returned along with some MAJOR OCD rituals/obsessions (we had to go down the stairs a certain way, open the doors a certain way - in certain orders, etc.) After about 5 months they practically disappeared. Some issues lingered but weren't a problem. Last year we did have a couple of issues - she wouldn't go to the bathroom for 5 months at school because it wasn't "blue" . . . but nothing that we couldn't deal with. This fall - out of the blue - it hit full force again - we can't say "hot cocoa" - it MUST be "hot chocolate" - we stir the cream of wheat the wrong way, etc.

 

It was dibilitating before but then it all but disappeared. The pediatrician and I have been keeping an eye on it but it hasn't seemed a problem. It is now rendering us almost nonfunctional.

 

I asked the pediatrician about PANDAS - I was concerned becasue it seemed cyclical and she did have a history with the strep A . . . the pediatrician dismissed it because she felt that it only dealt with tics. She directed me to a psychologist. We have state health insurance for the kids because we are self employed and DS doesn't qualify for any individual policy due to his adhd. There are only two clinics and they both have a waiting list of 4 months or so. The school psychologist thinks that this is definitely OCD-PANDAS but directed me back to the doctor to either do the testing or refer me to someone who does this. If she can't help me he is going to try and figure out who to send me to. In the meantime - for my own knowledge - who exactly should be doing the testing? And what tests should I be asking for - looking for?

 

Thanks,

Elizabeth

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Just realized I originally posted this in the OCD forum - the New Here thread I am talking about is in the Tics Forum.

 

 

Hi Elizabeth,

 

I am also new - my son was diagnosed with PANDAS in August. I just wrote a fairly lengthy reply to you and lost it due to a computer problem at my end. I only a few minutes but wanted to respond. Ronna is the PANDAS expert but I can answer a few questions based on my experience and research.

 

YES - OCD can occur with PANDAS, I think about 50% of kids get tics and 50% get OCD. My son had severe motor and vocal tics. ADHD also occurred when tics were bad, along with a personality change where nothing was going right for him, and he was lacking empathy ( very unlike his character) He was diagnosed by our pediatrician based the results of blood work, throat swab and symptoms. The Blood work was the ASO titer and the other one ( it was recently asked about by Mommy07 - something link DNase -- I should know this) and the throat swab was positive for strep. He was put on antibiotics and within 3 days the tics went away almost as quick as they came. I have written about my story under a New Here thread so won't repeat it all here. I did get a lot of info from the NIMH site ( national institute for mental health) you could google it along with PANDAS - there are MANY articles etc on the internet that talk about sudden onset of OCD with PANDAS. You should print them off and share the info with your doctor. If it is PANDAS you do need antibiotics - not a psychologist as your ped. is suggesting. MANY doctors do not know about PANDAS, I continue to be amazed that each doctor I have come across since then - emerg doctors and walk in clinics - no one has heard of PANDAS. Even the neurologist I saw admitted knowing little about it. I was VERY lucky that my ped. was familiar with this disorder or who knows where we would be now.

 

Good Luck.

[Ronnas]

Ha, Ha...it makes me laugh when I am referred to as a PANDAS expert...I don't feel like one...I've just been at this for a long time!

 

On the old braintalk I started a thread about basic PANDAS information that you may want to look at...

 

http://neuro-mancer.mgh.harvard.edu/ubb/Fo...TML/005700.html

 

If you are looking for a physician who has experience with PANDAS try contacting the NIMH either by phone or e-mail...

 

http://intramural.nimh.nih.gov/research/pdn/web.htm

 

PANDAS certainly is not just about tics! Your doctor needs to start doing some reading! The journal article I mention below from the Canadian Medical Association would be a good thing to show him.

 

PANDAS Red Flags

 

The biggest difference between regular OCD and PANDAS OCD is the sudden onset. OCD usually develops slowly over weeks, months or even years; however, PANDAS OCD seems to come out of the blue with parents saying one day their child woke up a different kid. There are also other symptoms that help differentiate the 2 types of OCD. PANDAS OCD is also characterized by:

 

Choreiform movements: involuntary or irregular writhing movements of the legs, arm or face

Presence of tics and/or hyperactivity

Irritability, temper tantrums, or mood lability

Nighttime difficulties

Severe nightmares and new bedtime rituals or fears

Separation anxiety

Age regression: going back to younger developmental stage

New handwriting problems, loss of math skills, sensory sensitivities

 

 

What to do if you suspect your child has PANDAS

 

Contact your pediatrician. Advocate for your child by being clear about what you want your doctor to do. In some cases, you may have to find a sympathetic doctor who is willing to learn about PANDAS. The PANDAS Clinic at NIMH may be willing to consult with doctors.

 

Have your pediatrician do a throat culture of group A B-hemolytic strep. Ask that the specimen be cultured, not just the rapid test.

 

Your doctor may also do a blood test to assess elevated streptococcal antibodies (Anti-DNAse B and Antistreptolysin titers (ASO).

 

You and/or your doctor can get information and treatment guidelines from the National Institute of Mental Health (www.nih.gov); type in PANDAS to access the appropriate link. Contact the OC Foundation to help locate an expert in OCD in your area. Have your child retested if there is a resurgence in OCD symptoms.

 

Below is some information that I think is very important which I got from The Canadian Medical Association Journal...it is a very good and should be posted in every doctors office!

 

CMAJ November 13, 2001; 165(10) Is obsessive-compulsive disorder an autoimmune disease by, Paul D. Arnold and Margaret A. Richter.

 

http://www.cmaj.ca/cgi/content/full/165/10/1353

 

They have illustrated a diagnostic algorithm which is based on the literature summarized and their own clinical judgement which is as follows:

 

Preadolescent child with sudden onset or exacerbation of OCD symptoms or tics.

 

Screen for comorbid symptoms: separation anxiety, emotional lability, ADHD.

 

Take medical history, focusing on a history suggestive of streptococcal infection and neurological problems.

 

Perform mental status examination.

 

Perform focused physical examinaiton looking for signs of streptococcal infection and abnormal movements (e.g., tics, choreiform movements).

 

Take family history, screening for OCD or tic disorders as well as rheumatic fever or Sydenham's chorea.

 

Is there evidence of a streptococcal infection temporally associated with symptom onset or exacerbation? OR is there a strong family history of rheumatic fever?

 

NO: Initiate, augment or switch standard treatments (e.g., CBT or SRI's for OCD) according to established guidelines.

 

YES: Take a throat swab and send for culture. Perform ASO titer. (an ASO titer is recommended because an antiDNAse B titer is expensive and not widely available in Canada).

 

Is the throat swab positive?

 

NO: Initiate, augment or switch standard treatments according to established guidelines.

 

YES: Treat infection with antibiotics. (and initiate, augment or switch standard treatments according to established guidelines.

 

Monitor symptoms over time

 

Treat recurrent infections promptly with antibiotics

 

Repeat ASO titers (suggest every 3-4 weeks for an additional 1-2 titers) and observe trends.

 

Is there evidence of repeated exacerbations of symptoms associated with either increassed titers or clinical evidence of streptococcal infections?

 

NO: Initiate, augment or switch standard treatments according to established guidelines.

 

YES: Consider switching or augmenting initial psychotropic medications.

 

Consider antibiotic prophylaxis in consultation with a pediatrician

 

Consult with a child psychiatrist or neurologist or refer to the NIMH PANDAS study.

 

Hope this helps...

[eaccae]

Thanks, guys. I read your response on the other board as well.

 

The OCD appeared out of the blue when she was 2 years old - after her hospitalization for the strep A infected lymph node. Although she tested negative on the throat culture - her body was clearly fighting the scarlet fever - the plumb sized node was full of the scarlet fever bacteria, she had the rash, and the rest of us had the rash and suffered from terrible strep with positive throat cultures. At the time I didn't know about PANDAS and never associated the OCD with the scarlet fever. The OCD got so bad and then almost as soon as it appeared . . . it disappeared. It has reappeared several times in the past three years - lasting for about 3-5 months at a time but not as bad as the first onset. Then around October - out of the blue - it appeared once again and has rendered us almost functionless! The school psychologist feels that this clearly resembles OCD but due to its "cyclical" pattern and the sudden onset and disappearance - it seems to follow the pattern of PANDAS OCD instead of just OCD. It is like having a completely different child around. We call her Dr. Jeckyll and Miss Hyde!!! And other things that I hadn't thought of before seem to strike a chord when reading the NIMH site - when she is going through this - she is unrinating CONSTANTLY - when she isn't going through this she doesn't have to go very frequently at all. She just was treated for a bladder infection. She never wets the bed but since October it has been a constant. She has developed an inability to go to bed when she was the one we could count on to go to sleep easily and the independent child who never needed me suddenly is glued to me - can't go to bed without me . . . can barely function if she is not on top of me - which is terribly unusual for her. She has developed a tic - this sound with her nose - that I have gotten used to. And then, of course, there is all the OCD stuff!!!! It manifests from a million small things - like how I stir the cream of wheat (I seem to always do it wrong, a mug was thrown across the room and broken because of this and so cream of wheat is no longer allowed in the house), if I put the clothes on in the wrong order then we have to start over, the underpants are too hot in the dryer and too cold if I don't put them in the dryer, there are very specific orders in which things must be done - but they change day to day . . . and that is just the tip of the iceberg!

 

I love my pediatrician. She is an unbelievable wealth of knowledge when it comes to ADHD and has helped my son out tremendously and has come through on some real health problems - as a medical doctor she is the best pediatrician in the area . . . but I feel that she really knows very little about PANDAS. I did read about the two titer blood tests - I am assuming these are what I should ask for? I did contact NIMH and hope to hear back from them. This is a tough one because the school psychologist is just learning about PANDAS from the NIMH website but is unsure of who to refer me to - and wants to rule it in or out before we do whatever it is we are going to do through the school. He just had a severe case of OCD and worked with a family for over 2 years with medication and treatment - it was a nightmare for the family and they just found out recently that it was caused by Lyme's Disease and the child is now 80% better just from taking the antibiotics to treat Lyme's. With the PANDAS - no one really seems to know what direction to turn to diagnosis this. The school psychologist is taking this seriously though - and actually called me today to direct me to the NIMH website. That is at least one step in the right direction.

 

Can they still tell through the titer tests if this is PANDAS - even though her original scarlet fever bout was 3 years ago? From what I understand from reading on the site it should tell me if she was fighting off strep within the last few months?

 

Thanks for the info!!

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Hi Elizabeth,

 

From what I understand with respect to the blood test is that the levels are the highest about 3 weeks after the infection and can remain elevated for several months, some do not return to normal levels until 6 months after the infection. I have posted recently that my son's titers were 800 at time of PANDAS outbreak ( normal range is less than 200) he was just re-tested last week and has been tic free (or pretty much tic free) for several weeks now. His levels were 1200. What I think may have happened is that the 800 level was at the time of the outbreak so perhaps a few weeks later he was close the the 2000 level then he has come down to 1200. ( It is what I like to think is happening anyway) We had done no blood work in between the two tests so will never know. So... I think that doing blood work now will certainly tell you is your daughter has been fighting a strep infection over the last few months.

Also, even though your doctor is not well versed with PANDAS - don't assume she does not want to become well versed in it. If you take in some info from the internet from NIMH highlighting the symptoms you have seen she should take the illness seriously. Many doctors know nothing about this - and in a way how could all doctors be expected to know all things anyway.. what makes a good doctor is one who is willing to learn from their patients (or patients mother's in this case)

So sorry to hear what challenges you have been facing. I sometimes thought it would be better that my son had the OCD outbreak rather than the tics - I thought somehow it would be less obvious. Grass is always greener on the other side so to speak. What you are going through does sound absolutely debilitating.

 

Good Luck - look forward to an update.

 

 

 

PS - FYI - the site has been down a lot yesterday - this is not common - I have not had this experience since starting to read here in November.

[eaccae]

Thanks, Alison.

 

Well - my pediatrician was supposed to be in today but she was out again. I spoke to the new pediatrician - he had no idea what PANDAS was but he was great to talk with - he ordered the panel of titer blood tests along with the Lyme disease just to rule it out and a CBC and a couple of others since we were going to be at the lab. It was a new experience for me to sit there and dictate the tests I wanted to the doctor (and one that neither DD or I had ever met before) - but he did it all without question and we go in tomorrow morning!

 

In the meantime I am trying to figure out if I should be referred to a pediatric neurologist or a neuropsychologist? I know that we were seeing a neuropsychologist for my son's adhd. I spent half my morning on the phone with the insurance company but I did get a lot done and have a great neuropsychologist and a great pediatric neurologist at Yale. I guess I should call the office tomorrow and ask THEM which one I should see before talking to my pediatrician.

 

Thanks again - your info has been terribly helpful!! I'll keep you posted.

Elizabeth

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Hi Elizabeth,

 

That is great news that the doctor was so open to what you had to tell him and was willing to order the tests. Look forward to hearing the results.

With respect to the referrals, we were initially referred to a child psychiatrist who felt there were no psychiatric concerns with my son and since his symptoms resolved themselves on antibiotics there was no need for him to be treated with the drugs prescribed by psychiatrists. We saw him just after the first round of antibiotics, within a few days he was bad again - went back on antibiotics and I asked for a referral to a neurologist and the infectious disease clinic. The neurologist did a full exam and found nothing wrong. I did mention to him and the nurse about the tics and tv and a clear association between the two - I said I was limiting it to 1/2 hour - the nurse wondered if I should NOT be limiting as he was probably relaxing and enjoying himself - the doctor said the limit of a half hour was fine - but did not indicate any knowledge of tics and tv. The neuro was honest and told me it seemed I knew more about PANDAS then he did. Wish I could go back and tell them what I know now!!! The infectious disease clinic really just gave the ok for the long term prophylactic antibiotics ( which my doctor is not big on). Initially they talked about a team working on this and including the neuro-psychiatric clinic as PANDAS is a neuro-psych disorder - that seemed to go nowhere as he was doing well on our second visit they said we did not have to come back.

In the end - I do believe PANDAS is ultimately an immune disorder - and the immune system is out of whack for whatever number of reasons. If you have read my recent posts on New Here you will see that we have discovered my son is allergic to cows milk - I would have never in a million years guessed this to have been a problem - he loves milk - never has an upset stomach, etc - but it was compromising his immune system and causing the tics. The step caused the huge explosion of tics but even on antibiotics the tics were not going away 100% - and we were on full antibiotics for about 4 months in total.

Our real turnaround came when we started on supplements and removed milk from his diet.

[Claire]

Alison,

 

Not to go off topic here, but the common wisdom among doctors is that kids who tic often do so during TV, because.... that is when they are relaxing and letting it out. (!)

 

Exactly the OPPOSITE of the reality. When I first started posting on this 15 months ago (I didn't find this forum and Braintalk until almost 2 years after we figured out the correlation and stopped TV/computer on CRTs), many of them had noticed more ticcing during computer/TV, but some posters on Braintalk almost drove me off forums completely because they were so convinced that this was true and that I was trying to deprive kids of the chance to relax and let tics out during TV/computer. One in particular was very harsh on me. However, thank goodness Chemar and Sheila Rogers made me welcome here, where any view was welcome as we all are trying to pool our thoughts and solve this together. Jennifer was already blazing trails with immune issue research.

 

This mainstream medical thinking about TV is so common and so misplaced that someone I know with a childs with tics was told by their doctor to expect it during TV as a natural thing. Well, what is relaxing to some neurological systems, just isn't to others. (My argument is always that listening to book tapes don't have this effect). It is no different than an ice cream treat being an enjoyable and harmless break for some, but eliciting an allergic reaction to others.

 

Once Sheila Rogers finishes and publishes her book (she is almost there), I want to get a letter published on it in a children's neurology journal about it (books have some credibility), and then somehow get a letter writing campaign going on people with success with alternate methods. Those of us who need to stay anonymous can do so. However, the tricky part of alternative methods is that when you have 50 people telling 50 different stories, the message is confused and overwhelming. This is why I focus so much on TV and food allergies. The supplement programs are so varied that it is hard to do without a baseline in the first place. Plus it just takes longer--though you were lucky in noticing sleep improvement right away (interesting, because my sleep improved in 3 days with the right supplements also!). People give up if they don't have some 'proof' they can make a difference--I believe that proof helps support them through the long process of detective work to truly heal the immune system.

 

Actually, my doctor told me this is why Feingold focused on artificial ingredients. It was much more measurable that some of the other things he thought would help.

 

 

EACCAE,

For PANDAS, the NIMH has a press release on it that anyone visiting their doctor who doesn't know about it might be advised to bring along. You are incredibly lucky to have found such an open-minded doctor. Our doctor didn't give it one once of credit until I sourced the NIMH study.

 

The press release below is old, and there may be more recent ones which would be better. But the NIMH is a well-respected, well-funded mainstream government organization. This link is now dead, but parents could search for an active one. The first step is to get the doctor to know this is a real thing.

 

Claire

----------------------------------

 

 

National Institutes of Health

Treatments Reduce Strep-Triggered Symptoms

of OCD and Tics in Some Children

 

EMBARGOED FOR RELEASE 6:30 PM, September 30, 1999 Contact:

Constance Burr

301-443-4536

 

http://www.nimh.nih.gov/events/prstrepocd.cfm

--------------------------------------------------------------------------------

 

National Institute of Mental Health (NIMH) researchers report that some children whose symptoms of obsessive-compulsive disorder (OCD) and tic disorders were worsened by a common strep infection have been successfully treated with plasma exchange (PEX) and intravenous immunoglobulin (IVIG). Dr. Susan Swedo and colleagues at the National Institutes of Health reported their findings in the October 2 issue of Lancet.

 

In previous studies, Dr. Swedo and others observed that in a small number of children suffering from the obsessional thoughts and compulsive behaviors typical of OCD and tic disorders, symptoms suddenly became worse following infection with Group A beta hemolytic streptococci. Evidence pointed to an autoimmune response to the infection, in which antibodies attack healthy as well as infected cells, leading to inflammation in the brain’s basal ganglia, an area involving movement and motor control. The syndrome, known as PANDAS, or Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections, typically occurs in young children and is noted for its dramatic, sudden onset or exacerbation of symptoms and episodic course, in which periods of symptom worsening follow strep infections.

 

The investigation shows that plasma exchange and IVIG relieve neuropsychiatric symptoms in this subgroup of children with tics and obsessive-compulsive disorder. A few children were even able to discontinue all psychotropic medications after treatment," Dr. Swedo said. "The study does not, however, support using PEX and IVIG for all cases of tics or OCD. Nor does it suggest that all children with untreated strep infections will get OCD, tics, or Tourette syndrome. In fact, strep infections are very common and strep-triggered neuropsychiatric disorders are quite rare, so the vast majority of children with strep infections are not at risk for developing these disorders, particularly with prompt attention and treatment," according to Dr. Swedo.

 

Although the cause of obsessions, compulsions, and tics is unknown, evidence suggests a common origin for all of these symptoms, with genetic and nongenetic factors playing a role. Symptoms affect 1–2% of children, but the number involving PANDAS is unknown. The antistreptococcal antibodies reported in children with OCD and tic disorders are considered part of the unique syndrome of the subgroup PANDAS.

 

Thirty children ages 9 to 15 with severe, infection-induced worsening of OCD or tic disorders, including Tourette syndrome, participated in the double blind, placebo controlled study at NIH. After medical, neurological, and psychiatric assessments, the children were randomly assigned to plasma exchange, IVIG, or placebo (saline solution). PEX and IVIG were chosen as active treatments because of their safety and effectiveness in a variety of childhood and adult immune-related diseases. Researchers rated symptom severity at baseline and at one month and twelve months after treatment, using standardized assessments for OCD, tics, anxiety, depression, and normal behavior.

 

Of the 29 children who completed the trial (19 boys, 10 girls), 10 received PEX, 9 IVIG, and 10 placebo. Both PEX and IVIG produced substantial improvement in obsessive-compulsive symptoms, anxiety, and overall functioning; PEX also improved tic symptoms. Ratings done one month after treatment revealed that patients in both the PEX and IVIG groups were much improved. In contrast, symptoms changed little in children who received placebo. The treatment gains of PEX and IVIG remained at one-year follow-up, with 14 of 17 subjects "much" or "very much" improved over baseline.

 

The one-month follow-up consisted of a neurological examination to rate symptom severity. After that evaluation, if a child taking placebo had no symptom improvement, IVIG or PEX was offered, so one-year ratings are not available for the placebo group. At the one-year assessment, obsessive-compulsive symptoms, tic severity, psychosocial functioning, and symptom severity remained improved. Among subjects who received IVIG, there was a 58% improvement in OCD symptoms; with those who received PEX, a 70% improvement; 82% of the children had symptom reductions of at least 50%. On average, children now had good functioning in all social areas. Parents and children often reported, "My child’s back to his old self again" or "Things are a lot easier now."

 

Susan J. Perlmutter, M.D., Marjorie A. Garvey, M.D., Susan Hamburger, M.S., M.A., Elad Feldman, B.S., and Henrietta L. Leonard, M.D., NIMH, and Susan F. Leitman, M.D., NIH Clinical Center, also participated in the study. Dr. Leonard is now affiliated with Rhode Island Hospital and Brown University.

 

The National Institute of Mental Health is part of the National Institutes of Health (NIH), the Federal Government’s primary agency for biomedical and behavioral research. NIH is a component of the U.S. Department of Health and Human Services.

 

Press Releases

 

Updated: September 30, 1999

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Hi Elizabeth,

 

Just wondered if you had any results yet and how your daughter was doing?

[eaccae]

Hi Alison,

 

Well - I finally received my referral to the neurologist. The nurse just called with the blood test results - she had no titers with the ASO and had a count of only 8 with the DNase . . . so it doesn't look like PANDAS. It is confusing because it is clearly OCD and it has sudden onset . . . disappears . . . comes on again months later - overnight, etc. The psychologist said that OCD doesn't normally do that! I guess we'll find out what the neurologist thinks! At least with the eleveated titer counts it would have been a mystery solved. Now to start from teh beginning again . . .

 

Thanks,

Elizabeth

[ad_ccl]

That is too bad the blood work did not indicate a recent strep infections - at least it would have been an answer and one with some solutions. Glad you will be seeing a neurologist. I am sure you will find some answers as you continue to search. I am still amazed that we have found the answers that we have found - I keep saying to my friends and family --- I cannot believe that milk was causing my son to have tics. I am not sure how food sensitivity could relate to OCD but from the stuff I am reading I continue to be shocked by the way the body can react to foods that they are allergic to. Not what you would expect - milk allergies in my mind would always just cause stomach upset, maybe skin problems - but not tics! My son loved milk and had no obvious reaction to it.

 

Good Luck with your journey....

 

 

 

Are there other illness that could cause sudden onset? I have done no research on this as my son clearly had strep when he had the sudden explosion of tics.