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PANDAS (PITANDS, tourettes, seizures, tics, OCD, violent, temper, strep, yeast)

Posted by on Sep. 17, 2008 at 6:20 PM
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As promised, info on PANDAS.

Rita and everyone, feel free to move, rearrange, repost, copy, do whatever.... My info is directly from searching posts at the Yahoo "mb12valtrex" group, names have been abbreviated except for Stan (Kurtz), the group leader.

I am quickly surmising our guy here, Dr. Kenny Bock, is one of the most experienced, well versed DAN!s on this particular topic. I will see what he says in his book and post that, too, when I have time.



--- In mb12valtrex@yahoogroups.com, E. wrote:

Hello, all--Just joined this group and I'm excited to read everyone's story.

We have been doing biomedical things for our 10 yo with Aspergers/ADHD very slowly and cautiously the past year. We are now ready for our first DAN appt next week (w/James Biddle in Asheville-- anyone??) and are prepared to do some testing, etc. I have been wanting to try mB12 and I'm so psyched to hear about the spray as it would be tough to give my son the shots.

Our son was dx in second grade when outbursts and social issues clearly went beyond normal boundaries. Up to then he'd had a difficult temperament and obvious sensory issues but I really don't think he would have qualified for a dx. I think the fact that we ate a lot of albacore tuna up to that point may have pushed him over the edge.

He sort of straddles the line between aspergers and adhd. His main issues are sensory problems, self-control, impulsiveness, inflexibility, disorganization, attention problems. The ADHD type stuff has actually worsened a great deal and I am trying to figure that one out. His social issues aren't that bad and he is very connected, empathetic, etc.

He is very sensitive to almost everything. His reaction to Rx drugs was how we got into biomedical in the first place. Things that have caused a neg. reaction include: supernuthera, TMG (big time), zinc. He does well with magnesium taurate, multivitamin, omega threes and probiotics and sauna. I am a little nervous about the mB12.

We also had a fascinating experience with Houston enzymes: We are not GFCF but did a trial of the enzymes. We expected up to three weeks of regression; however it kept getting worse for five weeks. At that point we dropped back significantly. The week we dropped back our son had no autistic issues at all. The theory on the enzyme group was that we were killing yeast with the enzymes and causing die-off, which caused the behavior. It was not a repeatable situation since I couldn't go through five weeks of that to get one perfect week forever!

I am also interested in virus issues. He does seem to match some of the profiles I've read--he has good almost normal periods and bad periods, he is better with a fever and on antibiotic. And, going back to the enzymes, another theory was that the enzymes were killing viruses. I'd like to rule out PANDAS as well since I've heard it can be linked to increased hyperactivity. He did have a frequent urination phase that could also be linked to that.

So . . . what are the most important tests we should request?

Thanks!! E.

Hi E.,

Welcome. Can you tell me what was going on around the time his second grade outbursts started? (besides the tuna) Any viral infections for example? Strep throat? or Silver fillings?

About the enzymes: I have a strong suspicion your child has fungal overgrowth and leaky
gut. When do enzymes... and bacteria starve and die... then back off... the bacteria stops dying off and leaking out the gut and your child looks OK.. then it starts all over.

I would get on SCD right away (less IGG Comprehensive Food markers from Great Plains or other test) . I do have a starter diet you might want to try. It's http://www.childrenscornerschool.com/diet.htm . Obviously don't use the vitamins you have found to be reactive.

Most important tests:

1. IGG Comprehensive 93 Food Allergy by blood (Great Plains for example). Don't believe
the mainstream when they tell you this test is not worthwhile, I find it to be useful almost
every time.

2. OATS (Organic Acid Test by urine) - Great Plains or Doctors Data I always learn something important and beneficial from this test.

3. PANDAS - Funny you should bring that up because some of the symptoms you are describing sound a little like symptoms of Tourettes and OCD as well, and PANDAS can directly cause that. That's why I asked you about Strep Troat, that's usually what triggers it. The tests to ask for are:

ASO (antistreptolysin-O) and AntiDNAse B (not to be confused as it often is by lab techs
as AntiDNA ds - for lupus). If either is positive, it is often quite treatable.

4. Typical herpes virus PCR and include HHV6, CMV, EPV

That's what I would do.

- Stan

Oh, one more thing (silly me).

MB12 Nasal Spray with Folinic will probably do well with your child (even if he has PANDAS or a herpes type virus). It probably won't help the core issue, but I've seen it help lower the stress and anxiety we see in the kids with PANDAS and other viral infections and helps them function better.

Keep us updated.

- Stan

Thanks, Stan,

He did have atypical strep throat in second grade and he's had a few viruses over the years but I can't say I wrote everything down as to the sequence, etc. The strep was after we had decided to have him evaluated so I can't say it caused anything but he could have had something prior to that. At the end of first grade he started peeing all the time--that is one of the most memorable "symptoms" of something weird b/c it was so opposite of how he'd been previously. That's gotten better but still not back to "normal."

When he was a toddler, though, he had an unexplained high fever of 106. We had taken him to the doctor a few days earlier and he got some abx for a sinus infection and then he spiked this fever.

Thanks again, E.

****************************************************************************************

Hi folks:

We're a week into Valtrex. Our son's main response seems to be increased verbal tics or stuttering. Kind of depressing. Has anyone else seen this go up? More importantly, has anyone seen this go up and NOT come down after using Valtrex for an extended period?

Best, G.

Hi G.,

Oh boy, this is where I got into trouble last time with one of the doctors in this group.
(disclaimer) I am just speaking from experience with a few children in my school and in my family. Check with your doctor for real medical advice.

Has your child ever had strep throat?

Sounds like you are kicking up a strep type bacteria. I would do a PANDAS test. PANDAS is type of strep bacteria that we see in some children with autism that causes tics and/or tourettes and/or OCD type symptoms. It's typically treated with a set of shots of Bicillin or oral Zithromax.

I did a quick search on the web and read that 8% of children with autism have tics.
http://www.eparent.com/welcome/alternative.htm

The test I would get are offered by mainstream laboratories. It's an ASO (antistreptolysin-
O) and AntiDNAse B (not to be confused with AntiDNA ds - for lupus)

This information came from a private physician board that I belong to and a discussion
with a director of developmental disorders at the National Institute of Health.

I think the best course of action is to keep going, contact your doctor fill him/her in and
get the blood work done and hopefully it will have cleared by the time you get your results back and if not you'll have a secondary course of action based on the test results.

IMO Valtrex doesn't cause tics or stuttering. This is the first time I've heard anyone even
speculate it. But, I did a search on the web on Valtrex and tics and spent about 20
minutes reading and can't find a reference to tics and taking Valtrex. That doesn't mean
I'm right. If I were you, I would do some reading on the web myself and see what you can
find or not find and that should help you to decide the best course of action.

But remember, I'm not a doctor... I'm not a doctor... I'm not a doctor... just a guy sharing
his view.

OK, we'll see if that prevents any "Can you believe what Stan just said? He's acting like a
doctor" emails in the doctor circles that I'm in, which happened the last time I talked about PANDAS.

Let us know how it goes G.

- Stan

****************************************************************************************

--- In mb12valtrex@yahoogroups.com, K. wrote:

We got results from Immunosciences for PANDAS panel. There are three abnormalities with IgM. Does this mean he has PANDAS?

Meanwhile while on transfer factor and Oral Immunoglobulins(Xymogen) he kicked up croup-like cough/runny nose/fever/5-6 cold sores on face. He is willing to sleep despite having slept only 5 hours in the last 30 hours.

We are a little worried today(approaching weekend as well). Left a message for local DAN. Some words of wisdom would help.

IgG Strep Enzymes 25 (0-100)
IgM Strep Enzymes 56 (0-50)
IgG Step Antigen 22 (0-100)
IgM Strep Antigen 59 (0-50)
IgG B-cell antigen 30 (0-100)
IGM B-cell antigen 40 (0-50)
Myelin Basic Proten IgG 22 (0-88)
Myelin Basic Protein IgM 30 (0-54)
Myelin Basic protein IgA 7 (0-21)
ASIALOGANGLIOSIDE IgG 15 (0-20)
ASIALOGANGLIOSIDE IgG 40 (0-20)
ASIALOGANGLIOSIDE IgA 2 (0-20)

First, I do not know much about raised ASIALOGANGLIOSIDE except it is an antibody that can be related to neurological functioning. Check with your doctor on that.

As far as the strep results, that looks like enough to start on some (intramuscular is my suggestion) antibiotics.

PANDAS is the antibody response to STREP that may have an autoimmune response
that can cause OCD, Tics, and Tourettes. The first step is to go after the bacteria and hope the immune system calms down. If it doesn't there are other steps you can take as well.

Get with your doctor and see what he suggests. I've mentioned doctors (and a team leader at the NIH) that suggest IM Bicillin.

Let us know how what your doctors says and how it goes.

- Stan

by on Sep. 17, 2008 at 6:20 PM
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Replies (1-2):
SantaMom
by on Sep. 17, 2008 at 6:23 PM

MORE:

In mb12valtrex@yahoogroups.com, "M.L. wrote:

I'm not sure that OCD is always bacterial, I know we tend to think of PANDAS - strep bacteria - right away, but we were seeing Dr. Jyonouchi (immunologist) for a time and she was of the opinion that Henry's OCD was viral. Evidence for this was that the behaviors did not go away on Zithromax, pretty strong dose, and last winter an IM injection of Bicillin did nothing to help either, so our DAN doc agrees his OCD was viral in origin. So the fact that the Valtrex helped makes sense in our case.

As for yeast, Henry has been taking garlic extract on a regular basis for a while now, since before the Valtrex. It had been keeping yeast in check, but I think you are right, I should perhaps test him again. Do most people prefer the meds, like Nizorel or AmphoB?

Thanks for the reply, M.L.

---

Yes, I suspect that OCD can be viral in nature (also metals autoimmunity) despite the
literature doesn't seem to support it. With PANDAS the antibodies affect the basal ganglia part of the brain. It would seem possible to me to have antibodies affecting this part of the brain (and others) in the presence of a viral infection or metals in the brain.

That's just my opinion.
- Stan

---

At one point I read of something related to PANDAS that did include viral triggers. Maybe PITAND? I think it was on an OCD or tourettes website. ~E.

---

Hi E.,
Here is a link to a website related to Pandas and Pitand. http://www.webpediatrics.com/pandas.html
K.

---

PANDAS is an onset specifically from Strep and PITAND seems to be a catch all for everything else.

PITAND -
(pediatric infection-triggered autoimmune neuropsychiatric disorder)

PANDAS -
(Paediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococci)


PITANDS diagnostic criteria
(1) At some time in his or her life, the patient must have met diagnostic criteria (DSM IV)
for one of the following neuropsychiatric disorders: Obsessive Compulsive Disorder, Tic
Disorder (including Tourette's), Autism, (or Autistic Spectrum Disorder).
(2) Pediatric onset: symptoms of the disorder first become evident between 18 months of
age and the beginning of puberty.
(3) The onset of clinically significant symptoms must be sudden (with or without a sub
clinical prodrome), and/or there must be a pattern of sudden, recurrent, clinically significant symptom exacerbation and remissions ("wax and waning pattern"). Onset of a specific episode typically can be assigned to a particular day or week, at which time symptoms seem to "explode" in severity, and they are frequently associated with an infectious episode.
(4) There must be evidence of an antecedent or concomitant infection. Such evidence might include a positive throat culture, positive streptococcal serologic findings (e.g. anti-streptolysin O or anti-streptococcal DNAse B), or a history of illness (e.g. pharyngitis, sinusitis, infection with Epstein-Barr virus, influenza, ?recurrent otitis media), and possibly recent exposure to childhood vaccination.
(5) Presence of auto antibodies (anticardiolipin, antineuronal, antibody/antigen complexes,
etc.)

(6) During the exacerbation, the majority of patients will have an abnormal neuropsychiatric examination, frequently with hyperactivity and adventitious movements ("choreiform" movements).
(7) Measurable clinical improvement following "Steroid Burst".

PANDAS diagnostic criteria
(1) Current presence of symptoms (DSM IV) of Obsessive Compulsive Disorder, Tic Disorder (including Tourette's), Autism or Autistic Spectrum Disorder, and Anorexia Nervosa*.
(2) Symptom onset between 18 months of age and puberty.
(3) Episodic course of symptom severity characterized by the abrupt onset of symptoms
and/or frequent, dramatic symptom exacerbation.
(4) Symptom exacerbation associated with beta-haemolytic streptoccocal infection.
(5) Presence of abnormal neuropsychiatric examination, including motor hyperactivity,
adventitious movements, tics, etc.
(6) Measurable clinical improvement following "Steroid Burst".

DISQUALIFYING FACTORS (absolute): Presence of symptoms before 1 year of age.
DISQUALIFYING FACTORS (relative): Confirmed Dg. of Autism and/or Autistic Spectrum
Disorder in sibling(s).
(*) Male patients with Anorexia Nervosa should be of a particular interest.
Modified "Allen criteria" (from Albert J. Allen Group A Streptococcal Infections and
Childhood Neuropsychiatric Disorders CNS Drugs Oct. 1997 8(4) 267-275

- Stan


****************************************************************************************


PANDAS, is an abbreviation for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. The term is used to describe a subset of children who have Obsessive Compulsive Disorder (OCD) and/or tic disorders such as Tourettes Syndrome, and in whom symptoms worsen following strep infections such as "Strep throat" and Scarlet Fever.

The children usually have dramatic, "overnight" onset of symptoms, including motor or vocal tics, obsessions, and/or compulsions. In addition to these symptoms, children may also become moody, irritable or show concerns about separating from parents or loved ones. This abrupt onset is generally preceded by a Strep throat infection.

PANDAS is similar to that of Rheumatic Fever, an autoimmune disorder triggered by strep throat infections. In every bacterial infection, the body produces antibodies against the invading bacteria and the antibodies help eliminate the bacteria from the body. However in Rheumatic Fever, the antibodies mistakenly recognize and "attack" the heart valves, joints, and/or certain parts of the brain. This phenomenon is called "molecular mimicry", which means that proteins on the cell wall of the strep bacteria are similar in some way to the proteins of the heart valve, joints, or brain

One part of the brain that is affected in PANDAS is the Basal Ganglia, which is believed to be responsible for movement and behavior. Thus, the antibodies interact with the brain to cause tics and/or OCD

Clinicians use 5 diagnostic criteria for the diagnosis of PANDAS (see below). At the present time the clinical features of the illness are the only means of determining whether or not a child might have PANDAS.

Q. What are the diagnostic criteria for PANDAS?

A.
They are:

  1. Presence of Obsessive-compulsive disorder and/or a tic disorder
  2. Pediatric onset of symptoms (age 3 years to puberty)
  3. Episodic course of symptom severity
  4. Association with group A Beta-hemolytic streptococcal infection (a positive throat culture for strep or history of Scarlet Fever.)
  5. Association with neurological abnormalities (motoric hyperactivity, or adventitious movements, such as choreiform movements)

Q. What is an episodic course of symptoms?

A. Children with PANDAS seem to have dramatic ups and downs in their OCD and/or tic severity. Tics or OCD which are almost always present at a relatively consistent level do not represent an episodic course. Many kids with OCD or tics have good days and bad days, or even good weeks and bad weeks. However, patients with PANDAS have a very sudden onset or worsening of their symptoms, followed by a slow, gradual improvement. If they get another strep infection, their symptoms suddenly worsen again. The increased symptom severity usually persists for at least several weeks, but may last for several months or longer. The tics or OCD then seem to gradually fade away, and the children often enjoy a few weeks or several months without problems. When they have another strep throat infection the tics or OCD return just as suddenly and dramatically as they did previously.

Q. Are there any other symptoms associated with PANDAS episodes?

A.
Yes. Children with PANDAS often experience one or more of the following symptoms in conjunction with their OCD and/or tics:

  1. ADHD symptoms (hyperactivity, inattention, fidgety)
  2. Separation anxiety (Child is "clingy" and has difficulty separating from his/her caregivers. For example, the child may not want to be in a different room in the house from his/her parents.)
  3. Mood changes (irritability, sadness, emotional lability)
  4. Sleep disturbance
  5. Night- time bed wetting and/or day- time urinary frequency
  6. Fine/gross motor changes (e.g. changes in handwriting)
  7. Joint pains

Here is another list from another site

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



Q. My child has had strep throat before, and he has tics and/or OCD. Does that mean he has PANDAS?

A.
No. Many children have OCD and/or tics, and almost all school aged children get strep throat at some point in their lives. In fact, the average grade-school student will have 2 – 3 strep throat infections each year PANDAS is considered when there is a very close relationship between the abrupt onset or worsening or OCD and/or tics, and a preceding strep infection. If strep is found in conjunction with two or three episodes of OCD/tics, then it may be that the child has PANDAS

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.

yes my son and best friend both have PANDAS< my son had scarlet fever and strep throat and deteriorated what felt like over night almost 2 years ago, which we have then seen a pattern with 3 other episodes, which gives him the dx of PANDAS, he gets very OCD over letter and turns extremely hyperlexic, his hand writing goes, he has melt downs over nothings, lots of tantrums, gets mean and will hurt his sisters for no reason etc. my aspie friend well get really depressed, and emotional, have melt downs, becomes unfunctionable, her immune system crashes and she will over night new allergies to the place she can barely eat. (she is an adult and it looks a bit different) she was previously dxed with tourettes which I pushed her to get tested as I saw it come and go like my son with his PANDAS flares and sure enough she tested positive, so now with treatment OLE (olive leaf extract) she is tic free as well. She has the history of tons of strep infection as a child and being on spectrum as well but wasn't caught till this last year. So her pieces are coming together now.


MamaRita
by Group Owner on Sep. 19, 2008 at 8:27 AM

WOW Darlene, I have been painting all week & had not seen this post. Thanks so much for sharing all this info.

bow down

 "Though the path may be very different for each of us, we do have one very important thing in common and that is our unspoken love for our children and our determination to make a difference in their life."


          

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