Pandas and Pitand

[myrose]

PANDAS and PITAND: Reality or New Panacea – Elena Koles, MD

 

In our medical practice, before applying any new testing modality or treatment, we use common sense and do not “buy” new ideas before studying their basis and logic. When something new comes onto the health ‘market’, either a medication or technique, it should be analyzed and evaluated. If you use this approach, the number of drug interactions and side effects can be minimized for most patients.

 

 

 

Since Leeuwenhoeck's development of the microscope and the Koch-Pasteur germ theory, people have looked for internal unseen agents that spread through the human population and cause disease. Today scientists know much more about the complexity of microbial symbiosis with humans and the antibody response known as the "humoral" arm of the immune system. But many physicians are still looking for primitive explanations for all health problems as an “internal enemy” with most illnesses, ranging from stomach pain to cancer, atherosclerosis and even schizophrenia. This simple idea can be easily understood by the general population and provides an easy treatment solution – antibiotic therapy.

 

In 1998, a new illness called PITAND (Pediatric Infection-triggered Autoimmune Neuropsychiatric Disorders) was suggested for neurological and behavioral disorders that have no clear explanation of their etiology and pathogenesis. Many parents have been told that the autism seen in their child might be a manifestation of so called PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococci). These parents are told that antibiotics are appropriate and should be used as a long term treatment.

 

Both PANDAS and PITAND are very rare conditions and have specific clinical and diagnostic criteria. associated with them. In late 1990s, PANDAS was diagnosed in children with obsessive compulsive disorder (OCD) and tics.

 

Children with PANDAS are clinically identified by dramatic, "overnight" onset of symptoms, including motor, facial or vocal tics, obsessions and/or compulsions, although this has not been consistent in all studies. Sudden onset should raise suspicion, but note that testing titers can help confirm the diagnosis if the titers are high for 2 tests taken 4 to 8 weeks apart.

 

PANDAS diagnostic criteria

 

(1) Current or past 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-hemolytic streptococcal infection.

 

(5) Presence of abnormal neuropsychiatric examination, including motor hyperactivity, adventitious movements, tics

 

(6) Measurable clinical improvement following "steroid burst".

 

Disqualifying factors (absolute): Presence of symptoms before 1 year of age.

 

Disqualifying factors (relative): Confirmed diagnosis of Autism and/or Autistic Spectrum Disorder in sibling(s).

 

 

 

PITAND 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 (anti-streptolysin O or anti-streptococcal DNAse , or a history of illness (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".

 

 

 

 

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 to be 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 2-3 episodes of OCD/tics, then it may be that the child has PANDAS.

 

The clinical value of PANDAS rests on the promise of effective antibiotic treatment, and here the results of controlled trials have been, at best, inconclusive. Penicillin prophylaxis did not prevent exacerbations of tics and OCD, but it did not prevent streptococcal pharyngitis either (1).

 

For now, the most compelling case for the value of antibiotic treatment comes from an uncontrolled study of 12 children who met PANDAS criteria and improved with antibiotics (2), and the testimonials of clinicians and investigators who have seen tics and OCD symptoms disappear in individual children treated with antibiotics. But clinical observations of this sort, convincing as they might appear, mislead at least as often as they point to useful information. Clinicians who have given antibiotics to children who meet PANDAS criteria have not been uniformly impressed (3). No wonder, because, please note, PANDAS is considered to be an autoimmune disorder, not an infection.

 

The PANDAS theory is only a hypothesis, and a highly controversial one, that has yet to be proven. It has engendered the use of controversial, dangerous and unproven treatment methodologies for children with tics and OCD (obsessive compulsive disorder), such as intravenous immunoglobulin (IVIG), plasma exchange, and the use of prophylactic antibiotics for the prevention of streptococcal infections. The Advisory Boards of the Tourette Syndrome Association do not currently recommend these procedures, and the NIH has also issued a warning about the use of these unproven methodologies. The recent study does not support the hypothesis that PANDAS and Tourette syndrome are secondary to antineuronal antibodies (4)

 

The controversial and still highly contentious concepts of PANDAS and PITAND were introduced by A. J. Allen and S. Swedo in the late 1990s. Swedo suggested that these children represent a unique subgroup defined by: (1) OCD and/or a tic disorder; (2) onset between age 2 and the beginning of puberty; (3) episodic course characterized by abrupt onset of symptoms or dramatic symptom exacerbations; (4) temporal association with infection; and (5) neurologic abnormalities (adventitious movements) during symptom exacerbations. They postulated that in susceptible children, an autoimmune response targeted to neurons is triggered.

 

Certain cases of anorexia nervosa, psychotic symptoms following some viral disease and a few cases of Autistic Spectrum Disorders have all been linked to an infectious agent, and their pathophysiology appears compatible with PANDAS and PITAND syndromes.

 

The test used for PANDAS confirmation is an elevated anti-streptococcal antibody titer (ASO or AntiDNAse-. But this just means the child has had a strep. infection sometime within the past few months, and his body created antibodies to fight the strep. bacteria. Some children create lots of antibodies and have very high titers (up to 2,000), while others have more modest elevations. The height of the titer elevation doesn’t matter. Further, elevated titers are not a bad thing. They are measuring a normal, healthy response – the production of antibodies to fight off an infection. The antibodies stay in the body for some time after the infection is gone, but the amount of time that the antibodies persist varies greatly between different individuals. Some children have "positive" antibody titers for many months after a single infection.

 

Since each lab measures titers in different ways, it is important to know the range used by the laboratory where the test was done – just ask where they draw the line between negative or positive titers. The lab at NIH considers strep. titers between 0-400 to be normal. Other labs set the upper limit at 150 or 200.

It is important to note that some grade-school aged children have chronically "elevated" titers. These may actually be in the normal range for that child, as there is a lot of individual variability in titer values. Because of this variability, doctors will often draw a titer when the child is sick, or shortly thereafter, and then draw another titer several weeks later to see if the titer is "rising" – if so, this is strong evidence that the illness was due to strep.

 

Please note, that other symptoms experienced by children with PANDAS should be considered only in conjunction with their OCD and/or tics:

 

ADHD symptoms (hyperactivity, attention deficit, fidgety)

Separation anxiety (child is "clingy" and has difficulty separating from his/her caregivers)

Mood changes (irritability, sadness, emotional lability)

Sleep disturbance

Night- time bed wetting and/or day- time urinary frequency

Fine/gross motor changes (e.g. changes in handwriting)

Joint pains

If diagnosis is confirmed then a battery of appropriate treatments should be applied. Some of them are not efficient.

 

Thus, the NIH does not recommend preventive tonsillectomies for children with PANDAS, as there is no evidence that they are helpful.

 

The fact that the "steroid burst" tend to control some symptoms of PANDAS brings it into consideration as a possible treatment for PANDAS. Since short-term steroid treatment only controls the symptoms temporarily and its prolonged use may have rather serious side effects, corticosteroids have not been and should not be used in PANDAS.

 

Antidepressants - SSRIs ( Lexapro, Prozac, Luvox, Paxil, Zoloft, etc.) have been frequently prescribed to children with PANDAS syndrome. Few parents understand that these medications are not recommended by manufacturer for children and particularly with PANDAS and are considered "off label" use. In addition, very serious side effects have recently prompted FDA to require so-called "black box" warning to be displayed on the packaging of these drugs. Considering that benefits of SSRIs have not been proven in patients with PANDAS, and that these medications can have serious side effects, their frequent and prolonged use in PANDAS should be seriously questioned.

 

Plasma exchange and IVIG have both been shown to be effective for the treatment of severe strep. triggered OCD and tics, and there were some benefits with these interventions. However, there were a number of side-effects associated with these treatments, including nausea, vomiting, headaches and dizziness. In addition, there is a risk of infection with any invasive procedures such as these. Thus, these treatments should be reserved for severely ill patients, and administered by a qualified team of health care professionals.

 

Antibiotics have been the mainstay of PANDAS and PITAND treatment. Unfortunately, patients with pronounced behavioral symptoms (severe separation anxiety, i.e.) are less likely to be relieved of all of their symptoms following the use of antibiotics.

 

Penicillin and other antibiotics kill streptococcus and other types of bacteria. The antibiotics may treat the sore throat or pharyngitis caused by the Strep by getting rid of the bacteria. However, in PANDAS, antibodies produced by the body in response to the infection are the cause of the problem, not the bacteria themselves. Therefore one could not expect antibiotics such as penicillin to treat the symptoms of PANDAS and PITAND. At this time, there is not enough evidence to recommend the long-term use of antibiotics (5) Until their usefulness is determined, antibiotics should NOT be used as long-term treatment for OCD and tics. It is even more questionable for Autism.

 

It is well known that even short-term usage of antibiotics can trigger many severe health problems including allergy, asthma, eczema, diabetes, etc. In our practice, we have one boy who developed autism after aggressive antibiotic treatment of his earache considered by his paediatrician as an infection.

 

Concerns have been raised that PANDAS may be overdiagnosed, as nearly a third of patients diagnosed with PANDAS by community physicians did not meet the criteria when examined by specialists, suggesting that a diagnosis of PANDAS is sometimes conferred by community physicians without scientific evidence (6).

 

 

 

The result of an initial study with 37 children found no effect of antibiotic treatment on infection rate, obsessive-compulsive symptoms or tic symptom severity (7) The methods in the latter study have been criticized (8).

 

 

 

Again, real PANDAS is very rare. In one pediatric practice, among 4000 children with streptococcal infection seen over a 3-year period, only 12 (0.3%) had PANDAS (9).

 

 

 

How can it be that most autistic children (1 in 150 American children) get this rare entity and are recommended long-term antibiotic treatment for Strep without ever having had an infection in their lives?

 

 

 

From our point of view, the infectious agent may be a trigger for Autism in susceptible individuals. This agent (mycoplasma, mycobacteria tuberculosis, borrelia, etc) should be carefully identified, and only then should the appropriate treatment for it be applied. All children should be tested for parasitic infestation, including exotic protozoa and fungi. The treatment should be highly individualized and carried out with care.

 

 

http://www.u-ok.net/Pandas.html

[EAMom]

It is well known that even short-term usage of antibiotics can trigger many severe health problems including allergy, asthma, eczema, diabetes, etc. In our practice, we have one boy who developed autism after aggressive antibiotic treatment of his earache considered by his paediatrician as an infection.

 

Concerns have been raised that PANDAS may be overdiagnosed, as nearly a third of patients diagnosed with PANDAS by community physicians did not meet the criteria when examined by specialists, suggesting that a diagnosis of PANDAS is sometimes conferred by community physicians without scientific evidence (6).

 

HI Myrose...

 

I find these statements highly suspect.

 

1) "It is well known that even-short term usage of antibiotics can trigger..." Okay, if is so well known, why is this the first I've heard of it? Also, where are the studies to confirm this? I notice that the writer uses lots of studies/footnotes to "back up" her other statements, why not this one?

 

2) Good grief, a case of one boy who developed autism after antibiotic treatment does not prove cause and effect! He may have also worn a new red sweater just before he developed autism. The point is, a single event, in one child, is not proof of causality. It is just as likely that the severe ear infection (the reason he was on antibiotics in the first place) "caused" the autism (esp. if strep was involved). It is also possible that autistic kids have "different" immune systems, making them more prone to things like ear infections that would require antibiotic treatment, and then the antibiotic then gets "implicated" as the cause of the whole problem.

 

Certainly Diana found that Azithromycin helped her son's autistic behaviors (from PANDAS)...so here is an example which is the exact reverse of what the writer claimed.

 

3) The study that is being mentioned (6) re. concerns about PANDAS being overdiagnosed was one that appeared in august 2008 in Pediatrics. If you actually read the whole study it is quite lame on many levels. For one thing, they never mentioned whether the kids that were supposedly "overdiagnosed" improved on the antibiotics, which would indicate that this was not actually an overdiagnosis! Also, this study was a retrospective study of lab results required rising titers and throat symptoms and positive culture to say that these kids had strep/PANDAS. Rising titers is a problem since most peds do not get a baseline and do 2 titer draws. We also all know that not all kids get high titers. Moreover, Swedo never said high or rising titers were required for a PANDAS diagnosis, but that they may be used as evidence of strep in the absence of an available throat culture. Also, we already know as pandas parents, that many of our kids will get strep with no other symptoms (no fever, no sore throat) other than a behavioral change, so to say that we need a sore throat to have PANDAS (or strep) is ridiculous.

 

I hope that makes you feel better myrose. If anyone has any other evidence to support the writer's claims about antibiotics "triggering" (which may be different than "causing") autism, etc. I'd be interested to hear from them. I think the writer needs to realize that our kids are not on antibiotics "just for the heck of it"...they have serious problems which are tied to strep which the antibiotics really do help control.

[myrose]

Hey EAMom,

Thanks for sharing your thoughts...when I first read it I thought I read it wrong and had to go back and read it again!

I am still deciding what we will do long term or in what direction to go, so of course I am reading EVERYTHING! and EVERYHING!

I never want to look back and say..."I wish I knew about that then" just like I do now when I think of that day I let them give her all those vaccinations in one day!!!!!!! If I only knew then, what I know now.

Hope your daughter is doing good, and that you and Buster had a nice weekend! (Happy LATE Halloween)

we made it though the whole day without any candy.....I would never deprive her of trick/treating so I let her and we had a blast.

She LOVES to buy things at the store, so when we returned home I bought all her candy from her. She happily gave it ALL up for $10.00.

I then sent it all to my husbands work to leave in the lunch room area.

So aside from a cupcake at school, and some organic all natural lolipops....we had a nice halloween! CANDYFREE style

[EAMom]

That's a nice way to avoid having your kid eat all that candy.

 

My kids are pretty good...they eat a little bit (about 2 fun size pieces) per day for many weeks. I end up sneaking some of their candy as well. They also give me some of the ones they don't like.

 

It's actually a relief to see my PANDAS dd eat candy...since during her PANDAS/anorexia nervosa episode last spring sugar was a big fear/obssession. "Does this have sugar in it?" "Will this make my stomach grow?" So, it nice to see her acting like a normal kid again!

[heveritt1]

I have not been on the post in a while, my son was in a remission for about 8 months. I have fought with the idea of having him on long term antibotics and after a very long fight with the tic and behavior the doc prescribed 800 mg of amox. I had it made at a componding place so it would be die free. Just thought I would share what I think was my latest mistake, "I wish I had not", experience. After 3 months of the amox, things are good. I decided it was time to see what happened if he was taken off. He was off for 3 weeks. In the mean time, I developed another bad case of sinusitus and was not cured with 14 days of omnicef and a round of steroids, the doc did a culture from my sinus's. Sure enough it was strep!! I immediatly came home and started ds on his amox again, but 2 weeks later some strange behavior started, more trouble at school.. then the eye tic. He did develope a cough, but no fever or sore throat. I took him to the doc and he actually tested positive for strep. He has never actually tested positive in throat, usually just the titers are high and the onset symptoms. I regret letting the amox lapse as he can barely function now. He blinks, eye rolls wtih his whole face every second or so.

So, that is my two cents worth. I know it will take a month or more of stronger antibotics again to ge rid of it again ,and this time I will keep him on his prevenative dose (if it works again).

[peglem]

I've done quite a bit of studying on biomedical autism treatment/causes. The hypothesis that antibiotics are involved in causing autism stems from the fact that autistic kids as a group seem to have had more ear infections/antibiotics than the general population. Since autistic kids tend toward gut issues- which can be caused by antibiotics...well, that's the line of thought anyway. But correlation does not = causation. Its kind of a chicken and egg story- is the immune system messed up 1st, allowing for frequent infections? That would actually be my first guess. The antibiotic autism link has not been proven but its definately out there as something that needs to be studied.

[myrose]

Thanks for your thoughts Peglem. You and EAMOM made some really good points and helped me understand alot of the confusion I was having with the paper.

[P_Mom]

Myrose,

 

Just wondering how your daughter is doing on the protocol you implemented after the dried blood results.? Have you noticed any changes?? Are you still doing Topomax?

 

Thanks!

[EAMom]

The hygiene hypothesis is a theory which could (very indirectly) implicate antibiotic use (among other things) as a cause of the increase of allergies (and autism) in the past several years /decades. One thing to remember about this hypothesis is however, is that it mainly pertains to exposure as an infant (under a year), when the immune system is immature. Exposure to germs, dirt, pets, other kids, seems to help "train" the young immune system in a good way. From wikipedia: http://en.wikipedia.org/wiki/Hygiene_hypothesis

 

The major proposed alternative mechanistic explanation is that the developing immune system must receive stimuli (from infectious agents, symbiotic bacteria, or parasites) in order to adequately develop regulatory T cells, or it will be more susceptible to autoimmune diseases and allergic diseases, because of insufficiently repressed TH1 and TH2 responses, respectively.[4]

 

http://www.grc.nia.nih.gov/branches/rrb/dna/pubs/aaihh.pdf (This article is an interesting summary of the hygiene hypothesis tying it into both the rise in allergies and austism.)

 

Even keeping this in mind...I find it highly unlikely that antibioitcs would have much of an effect (in terms of causing allergies/autism) in an older child. In an infant, use of antibioitcs could have an effect on the developing immune system, making things a little too "hygienic"...but other things will play a role as well...antibacterial soap, lack of early household exposure to pets, not playing in the dirt in the backyard, lack of exposure to other kids and their germs.

 

On the flip side...this theory seems to imply (to me) that use of probiotics would be a very good thing.

 

And, even with all this in mind...I would never deny an infant antibiotics if they needed it (for a bad ear infection or whatever).

[Dedee]

Heveritt,

 

Thanks for coming back to share your experience. It is so helpful to hear others experiences on and off antibiotics and other treatments. I am sorry to hear you are having trouble again. I hope you are able to get things setteled soon. BTW, how old is your child?

 

Dedee

[myrose]

PMom....

Its been about a week now since we started the program. I have noticed a few things but am not sure if they are related to her treatment.

The first thing was a healthy appetite...she is really eating and this makes me happy. She has been 40 pounds forever!!!

Next is that the whites of her eyes seem REALLY white.

Sometimes she would have the bag like effect under her eyes as well, almost like the dark circles some describe on here...haven't seen that at all.

Lastly is her complexion...I can't really put my finger on the change but it looks so good. She looks maybe more vibrant (healthy) more glowing (hope that makes sense, hard to explain)

Not sure if these things are from the program, but I notice every little thing and these 3 things are absouletly different.

 

We will not know if all this will effect her tics and other issues until we wean off from topamax (yes we are still on it)

We plan to come off topamx after the program is completed and also after her blood is re-checked (dry analysis) and we get the okay that it worked. I am praying everyday that it will all have a positive effect on her. The last two weeks deal with the metal extraction and that is what I really want to see....as far as the outcome afterwards.

Hope all is well with you...Thanks for thinking of us and have a nice night.

[heveritt1]

Heveritt,

 

Thanks for coming back to share your experience. It is so helpful to hear others experiences on and off antibiotics and other treatments. I am sorry to hear you are having trouble again. I hope you are able to get things setteled soon. BTW, how old is your child?

 

Dedee

 

Hi there, My son is 6.5 and this all started when he was 4 yrs old. We have done several diet changes also, but recently we decided we could not tell much of a difference having him off os dairy and wheat to we started back again. I guess it could have weakened his immune system right about the time I let the antibotics lapse. I am headed to the doc today to have my throat checked since I am alway sick too. I take him to the doc tomorrow to beg for mor Zith. I will say that after 2 days he was MUCH better, then this morning I see it again already. But the behaviour has settled some.

[michele]

I believe that PANDAS is on the spectrum. A ton of the issues are similar to autism. If you search the autism community many of the kids have PANDAS symptoms also immune troubles. Also the sensory issues are common to both. Also the obsessive thoughts. Hyperactivity can be common to both also. http://www.danasview.net/virfile.htm Here is a good link to some good immune and autism info.

 

What might viral issues look like in my child?

 

I have been unable to establish any precise list of what viral signs would look like—there is too much controversy. Some of the signs listed are considered soft signs while others are considered more valid indicators. It would depend on who you spoke to which category any of these possible indicators falls into. In researching this file I read many times that dealing with viral issues is sometimes like chelating autistic children: the only way to know for sure if it is going to work is to try it and do it properly.

 

Some children might display the following signs:

 

· Motor problems, including fine motor problems. Sometimes these problems are one-sided (often the right side seems weaker). Some people believe that toe-walking is also a sign.

· The child seems to move from improved behaviour to more autistic behaviour for no apparent reason. These cycles of progression then regression might last weeks or months.

· Less autistic behaviours during and immediately following fevers followed by a return to more typical behaviours after this time has passed.

· Chronic viral-like illnesses or no symptoms of ever being sick.

· Negative reaction after MMR vaccination.

· Cold sores/fever blisters/unexplained sores in or around mouth. Warts, plantar warts.

· Continual gut problems in spite of all possible efforts to alleviate them.

· Improvement while on antibiotics—this may be a result of a concomitant bacterial problem.

· Hyperactivity

· OCD, scripting, repeating fairly meaningless actions (tics) or sounds.

· Staying in own world (see for example the recovery video of Ethan as mentioned below for this last one).

· Sensory integration disorder, eye or ear sensitivity

. Hypotonia.

 

Some parents might choose to run tests that may indicate viral problems. It is, however, of no use to run these tests unless your doctor is clear as to the course of treatment that will be followed if certain results are obtained. It would be important to understand what these treatments will be, on what criteria will they be used, and if you are willing to have your child undergo these treatments.

 

Sometimes these tests will show extremely high titers to things such as Epstein-Barr Virus (very rare in a young child), Cytomegalovirus, Herpes Simplex Viruses 1 and 2, HHV6 and the measles virus (which, of course, most children will have titers to because of the MMR).

 

Sometimes the titers will not be high at all because the child’s immune system is unable to mount any sort of defense. Andy points out that, “If titers are NOT elevated for something they were vaccinated against, then yes there is a serious problem, it is with humoral immunity, and it needs to be explored carefully.”

 

Some feel that low NK cells is a sign of viral problems although low NK cells is indicative of mercury toxicity too and this would seem like the much more likely explanation in metal toxic children. Andy comments that, “Low NK cell number AND activity is characteristic of mercury toxicity, is seen in all mercury toxic kids and not the others, and does not correlate very well with response to antiviral treatment.”

 

Dr. McCandless’s book speaks of testing. The lab recommended by Dr. McCandless for testing is Immunosciences Lab., Inc which you can find at

http://www.immuno-sci-lab.com/index2.html

Again, if your doctor is not very clear as to how test results will dictate treatment, the tests may not be worthwhile, in terms of both expense and having blood drawn from your child.

 

Common viruses can be tested at labs within your own city and covered by insurance. Understand that IgG refers to past infection or vaccination. IgM refers to current or recent infection or vaccination. You would want to test for both for each virus.

 

Consistant low white blood count and high lymphocyte percentage are often associated with viral infections. Andy notes that, “lymphocytes go up during and for a few weeks after viral infections, while neutrophils go up during and for a few weeks after bacterial or fungal/yeast infections.”

 

I don't think it is the antibiotics causing the autism symptoms but the PANDAS or viral symptoms. I know we experience the symptoms on that list. Definitely the motor hyptonia issues and toe walking is on that list too.

 

 

PMom....

Its been about a week now since we started the program. I have noticed a few things but am not sure if they are related to her treatment.

The first thing was a healthy appetite...she is really eating and this makes me happy. She has been 40 pounds forever!!!

Next is that the whites of her eyes seem REALLY white.

Sometimes she would have the bag like effect under her eyes as well, almost like the dark circles some describe on here...haven't seen that at all.

Lastly is her complexion...I can't really put my finger on the change but it looks so good. She looks maybe more vibrant (healthy) more glowing (hope that makes sense, hard to explain)

Not sure if these things are from the program, but I notice every little thing and these 3 things are absouletly different.

 

We will not know if all this will effect her tics and other issues until we wean off from topamax (yes we are still on it)

We plan to come off topamx after the program is completed and also after her blood is re-checked (dry analysis) and we get the okay that it worked. I am praying everyday that it will all have a positive effect on her. The last two weeks deal with the metal extraction and that is what I really want to see....as far as the outcome afterwards.

Hope all is well with you...Thanks for thinking of us and have a nice night.

[myrose]

PMOM....just realized I stated its been about a week since starting the program...we are actually starting our 3rd week today.

[pmoreno]

I believe that PANDAS is on the spectrum. A ton of the issues are similar to autism. If you search the autism community many of the kids have PANDAS symptoms also immune troubles. Also the sensory issues are common to both. Also the obsessive thoughts. Hyperactivity can be common to both also. http://www.danasview.net/virfile.htm Here is a good link to some good immune and autism info.

 

What might viral issues look like in my child?

 

I have been unable to establish any precise list of what viral signs would look like—there is too much controversy. Some of the signs listed are considered soft signs while others are considered more valid indicators. It would depend on who you spoke to which category any of these possible indicators falls into. In researching this file I read many times that dealing with viral issues is sometimes like chelating autistic children: the only way to know for sure if it is going to work is to try it and do it properly.

 

Some children might display the following signs:

 

· Motor problems, including fine motor problems. Sometimes these problems are one-sided (often the right side seems weaker). Some people believe that toe-walking is also a sign.

· The child seems to move from improved behaviour to more autistic behaviour for no apparent reason. These cycles of progression then regression might last weeks or months.

· Less autistic behaviours during and immediately following fevers followed by a return to more typical behaviours after this time has passed.

· Chronic viral-like illnesses or no symptoms of ever being sick.

· Negative reaction after MMR vaccination.

· Cold sores/fever blisters/unexplained sores in or around mouth. Warts, plantar warts.

 

 

Very interesting - this viral idea. I had forgotten about this, but before Gaby got sick with PANDAS (1 year ago) she had a bout with several plantar's warts and I believe one wart on her finger too. It wasn't long after that she had that week long fever, sore throat, headaches that launched her into this whole nightmare and then of course a week after that she ended up with a mouth full of herpes simplex lesions, gums - tongue - lips - even a couple down her chin. Since then, she has had one small herpes lesion on her lower lip about every other month or so (sometimes skips 1 or 2 months). Pat

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

· Continual gut problems in spite of all possible efforts to alleviate them.

· Improvement while on antibiotics—this may be a result of a concomitant bacterial problem.

· Hyperactivity

· OCD, scripting, repeating fairly meaningless actions (tics) or sounds.

· Staying in own world (see for example the recovery video of Ethan as mentioned below for this last one).

· Sensory integration disorder, eye or ear sensitivity

. Hypotonia.

 

Some parents might choose to run tests that may indicate viral problems. It is, however, of no use to run these tests unless your doctor is clear as to the course of treatment that will be followed if certain results are obtained. It would be important to understand what these treatments will be, on what criteria will they be used, and if you are willing to have your child undergo these treatments.

 

Sometimes these tests will show extremely high titers to things such as Epstein-Barr Virus (very rare in a young child), Cytomegalovirus, Herpes Simplex Viruses 1 and 2, HHV6 and the measles virus (which, of course, most children will have titers to because of the MMR).

 

Sometimes the titers will not be high at all because the child’s immune system is unable to mount any sort of defense. Andy points out that, “If titers are NOT elevated for something they were vaccinated against, then yes there is a serious problem, it is with humoral immunity, and it needs to be explored carefully.”

 

Some feel that low NK cells is a sign of viral problems although low NK cells is indicative of mercury toxicity too and this would seem like the much more likely explanation in metal toxic children. Andy comments that, “Low NK cell number AND activity is characteristic of mercury toxicity, is seen in all mercury toxic kids and not the others, and does not correlate very well with response to antiviral treatment.”

 

Dr. McCandless’s book speaks of testing. The lab recommended by Dr. McCandless for testing is Immunosciences Lab., Inc which you can find at

http://www.immuno-sci-lab.com/index2.html

Again, if your doctor is not very clear as to how test results will dictate treatment, the tests may not be worthwhile, in terms of both expense and having blood drawn from your child.

 

Common viruses can be tested at labs within your own city and covered by insurance. Understand that IgG refers to past infection or vaccination. IgM refers to current or recent infection or vaccination. You would want to test for both for each virus.

 

Consistant low white blood count and high lymphocyte percentage are often associated with viral infections. Andy notes that, “lymphocytes go up during and for a few weeks after viral infections, while neutrophils go up during and for a few weeks after bacterial or fungal/yeast infections.”

 

I don't think it is the antibiotics causing the autism symptoms but the PANDAS or viral symptoms. I know we experience the symptoms on that list. Definitely the motor hyptonia issues and toe walking is on that list too.

 

 

PMom....

Its been about a week now since we started the program. I have noticed a few things but am not sure if they are related to her treatment.

The first thing was a healthy appetite...she is really eating and this makes me happy. She has been 40 pounds forever!!!

Next is that the whites of her eyes seem REALLY white.

Sometimes she would have the bag like effect under her eyes as well, almost like the dark circles some describe on here...haven't seen that at all.

Lastly is her complexion...I can't really put my finger on the change but it looks so good. She looks maybe more vibrant (healthy) more glowing (hope that makes sense, hard to explain)

Not sure if these things are from the program, but I notice every little thing and these 3 things are absouletly different.

 

We will not know if all this will effect her tics and other issues until we wean off from topamax (yes we are still on it)

We plan to come off topamx after the program is completed and also after her blood is re-checked (dry analysis) and we get the okay that it worked. I am praying everyday that it will all have a positive effect on her. The last two weeks deal with the metal extraction and that is what I really want to see....as far as the outcome afterwards.

Hope all is well with you...Thanks for thinking of us and have a nice night.