Does my child have PANDAS?

[naturalmama]

I believe my nine year old dd has PANDAS. Her doctor first suggested it as a possibility when her behavioral issues were going through the roof everytime someone in the house had strep. She had never been diagnosed with strep before this time. The first time she was exposed was when she was four months old, and my husband was diagnosed with it. We have always homeschooled her so her exposure beyond that has been limited.

 

In January we found out that a friend of hers that had been visiting the day before had come down with strep. A few days later my husband and I caught it. I was sick in bed and she kept having rages that were directed toward her little sister. I could not figure out why she was doing this. As I started to get better I started giving her raw garlic to keep her from getting strep, and the behaviors subsided. Her sister was diagnosed with strep in March. My oldest was complaining of a stomach ache so I had them swab her. It came back positive. The doctor was very surprised as she had no symptoms other than her stomach. She was feeling better by that evening so I opted not to give her the perscription antibiotics. However, the aggressive behaviors were back. I started her on raw garlic to keep her from getting strep (I was still not suspecting PANDAS at this point) and again the behaviors subsided. We went on a trip a few days later. I forgot to give her the garlic for a couple of days, and the behaviors returned. Again I started the garlic and the behaviors subsided. At this point I began to suspect PANDAS.

 

In April she woke up with a fever and complained of a sore throat. I took her in and she tested positive for strep. I talked with her doctor about the behaviors we had seen and he suggested PANDAS. I started her on Amoxicillin that afternoon. The next day she was again becoming very aggressive and emotional. I also began noticing that she had lots of new tics. About 5 days after starting the antibiotics the behaviors subsided. The next day she woke up with an itchy rash. My husband took her in to see the doctor and it was confirmed to be an Amoxicillin reaction. However, the doctor would not prescribe a different antibiotic. She insisted that she had been on antibiotics long enough to eradicate the strep. This was not her primary doctor that had suggested PANDAS.

 

Two days later the behaviors were back. I immediately called the doctor's office to request antibiotics. Her primary doctor said that he could not prescribe them but asked to see her. The office made an app. for the next week. When we went to see him he could see changes in my dd. He ordered a throat culture and a blood test to check her ASO titers, throid, and iron levels. All her tests came back within normal ranges and her ASO titers were low. Her throat culture came back negative. At this point her doctor ruled out a PANDAS diagnosis and suggested she is mentally ill. There is a history of mental illness in my family on both sides that he is aware of. He referred her to a psychiatrist.

 

I'm not sure where to go from here as I believe that we are dealing with PANDAS. I told the doctor that I was going to try to treat her with natural supplements before taking her to a psychiatrist. She has always had neurological issues, and many of the behaviors we are seeing have always been there. However, they are greatly magnified right now.

Some of these behaviors are:

 

rage/aggression

tantrums

separation anxiety

irrational fears

defiance

tics

OCD

meltdowns

low frustration tolerance

restless energy

noise sensitivity

 

Any help would be greatly appreciated.

 

 

 

[AmySLP]

She probably has strep systemically, as she was not treated with abx. For the confirmed strep in January. Then she was simply on ammox., not enough to wipe out strep that she's had for months. My daughter had strep for 6 mos. that would not respond to abx. During that time she developed pandas. It took a big gun abx....clindamycin, to finally eradicate it. She too did not rise titers...it signals an immune response problem. If she did not test positive on the culture, but did so on rapid, its likely that it wasn't a good swab/ sample.

 

Best advice....see a PANDAS doc. Have her swabbed for strep, even if you take her to a walk in for documentation purposes. This may get her a stronger rx. Also, strep lies in places other than the throat, so that may be a possibility as well since she's had it a while.

[smartyjones]

natural -- are you aware that your behavior list reads like a pandas symptom list? also, are you aware that what is commonly referred to as PANDAS has many more causes than solely strep? PANS -- is the name used for other etiologies. i'm not so sure that many/most/all 'mental illness' does not have root in infectious cause. so - perhaps the mental illness you refer to in your family trees is shared sensitivities to infections or other body systems gone awry. perhaps what you refer to as her "always" neurological issues has been due to this type of trouble. perhaps not -- but if it's something you feel you should investigate, then i'd say you should.

 

i appreciate your desire to treat her with natural supplements -- we see an integrative MD who treats with homeopathy. my ds is doing very well on this path. there are many of us who have done so. i believe getting to the root of the issue(s) is imperative. please research and discover more about PANS and those pandas patients that did not show titers or cultures,yet saw results with treatments.

 

when my ds was first diagnosed, he was put on a 5 day course of azith. ( he has allergies to penicillins) it was disastrous. our then useless ped stated, "i think you'll find the behaviors and the strep are not related." he had titers of 898 and a positive culture, sudden classic behaviors. we switched peds. the new one put him on 30 days of keflex, did a sinus CT which showed all 6 cavities infected. he showed 100% remission in about 3 days. unfortunately, it didn't last. he backslide about 30 days off abx. we then kept searching for answers -- found many other infections. most of us here would not think 5 days is nearly enough to eradicate the type of strep we have dealt with. my ds had a confirmed strep infection 2.5 years prior to pandas onset. i highly suspect he never kicked that initial infection.

 

you did see a change after 5 days on the abx.

 

i don't know that your dd does have pans or doesn't, but i'd advise to not back off the thought of infectious etiology until you feel it's correct to do so. good luck!

[naturalmama]

Thank you so much for the help,

 

I do believe in my heart that we are dealing with PANDAS. It was difficult losing the support of her doctor. It was also difficult to have her school administrator look me in the eyes and tell me that I know in my heart that is she has a mental illness. She advised me to set up an app. with a neurologist, psychiatrist, and OT. Her doctor advised me to take her to a psychiatrist. I want to take her to someone who understands what is happening to her and how to treat her. We live in a small area and I don't know of any doctors in our area that treat PANDAS. I was surprised that her doctor even knew about it. He had done a fair amount of research on PANDAS. How do I go about finding a PANDAS doctor? We are on the central coast of California.

 

Amy were you saying that the fact that she didn't have a rise in titers signaled an immune response problem? Would antibiotics affect how much her titers would rise? I ask this as I had her on raw garlic and olive leaf extract at the time. I was also wondering if that caused her negative throat culture. I did stop giving them to her the day before we went to see her doctor and several days before her blood draw for checking her ASO titers. Where could I find information on the titers not rising due to an immune response problem that I could share with her doctor?

 

Smartyjones, I am aware that her behavior coincides with the PANDAS symtom lists I have read. That is why I am searching for answers here. I just needed some confirmation from others who have been through similar experiences. I have often wondered over the years if she might have PANDAS. However, her symptoms were pretty mild and she didn't fit all the criteria. Like she never had a sudden onset of symptoms (before this year) that I could remember. Also, she has had many of her issues from birth, and I read that the onset would not have happened until a child is three. I have often wondered about the infants that are exposed. Since their immune systems are so immature I would think that they would be at an increased risk of PANDAS. Especially since they are usually undergoing so many different vaccinations during this time. My daughter received her first vaccinations around the time that my husband had strep (4 months).

 

I am also aware of PANS. I also have wondered about "mental illness" having it's root in infectious cause. My mother became very ill and had a high fever when she was pregnant with my oldest brother. He then had a bad reaction to a smallpox vaccine he received as an infant. He was taken to UCLA when he was five. They told my parents that he was mentally retarded. At 15 he went into a catatonic state for 6 weeks and when he came out of that he was having phychotic episodes. He was diagnosed with schizophrenia. When I think back now, he had many PANDAS symptoms. He had OCD, ticks, and hyperactivity. He never had rages until he was 15. Very facinating.

 

My mother-in-law had rheumatic fever when she was a child.

 

Thank you so much for the encouragement. I have no plans of changing course at this point. I do believe that we are dealing with an infectious etiology. Finding out how to help her is the big concern at this point.

 

How is your son doing now?

 

 

 

 

[Dedee]

You need to ignore the statements of those who are ignorant of PANS and its presentation. Unless they have lived through it then their opinion is useless in this situation. I have 3 PANS children, and I have had doctor's, teachers, family and friends try to tell me that it had nothing to do with any sort of infection. Wrong! They did not see my child get better within 48 hours of starting an antibiotic or see them deteriorate within 3 days of stopping an antibiotic. In my house we call antibiotics "antipsychiotics" because that is how they work for my kids. You need to see a PANS specialist. You will get validation that what you know in your gut is correct and you will get your child on a treatment path toward healing. You may have to travel...most of us do, but it is worth it to get the right treatment for your child. Read as much as you can on PANS and be armed with information for those ignorant statements. You may want to get some articles for the teacher who obviously needs education. The pandasnetwork.org site has some great references. Best of luck. Keep fighting for your child.

 

Dedee

[Missmom]

You could call the NIMH to try qualify for the pandas study. She sounds like a good candidate. No SSRI use or steroid use.

Edited June 5, 2013 by Missmom

[qannie47]

I was going to respond to this post. But as usual, with this forum, you are dealing with highly informed people who know what they are talking about. So, DITTO, to what they all said.

[Mayzoo]

Pandas Network is a good place to start to find a doctor in your area. Here is the form you fill out for them to get back to you on a doc in your area: http://www.pandasresourcenetwork.org/about-p-a-n-d-a-s/find-a-doctor/.

 

My daughter's ASO and Anti-dnase have never risen during or after a confirmed strep throat infection. The ASO and anti-dnase titers are a measure of how many antibodies for fighting strep that my daughter has. Her immunologist states that no rise in titers during/after infection indicates that her body has an immune issue since it is not creating antibodies to fight off the infection. I will see if I can find an article for you about this.

 

In my daughter's case, an immune issue was confirmed by a blood test for her IgG, IgA, Igm, and IgE. However, her immunologist also stated since she had very low titers (antibodies) to strep, strep antibodies were not her trigger into PANDAS. Upon digging further, it appears my kiddo is what seems to be commonly called a "viral kid". She has high to very high antibody titers to rubella, mumps, rubeola, polio, EBV, HHV-6, and the doc forgot to order her coxsackie titers. She has way too many antibodies running around in her system with nothing to attack. Bored antibodies are not a good thing in her case because they found something to attack (basal ganglia.) We are trying to get some of these down to a reasonable level and see how kiddo is doing then.

 

This is usually an up and down journey to recovery. Good luck.

Edited June 6, 2013 by Mayzoo

[naturalmama]

Thank you so much for all the helpful advice and info. I am so amazed at the level of knowledge you all have about this condition. If only more pediatricians were so informed.

 

Mayzo, I would love it if you could find an article for me. I would love to share it with her pediatrician. I'm curious though that if low titers indicate that strep antibodies are not the trigger for PANDAS, why did the symptoms show up during her strep infection? I am still wondering if giving her the natural antibiotics could have anything to do with keeping them from rising. If a child goes through a round of antibiotics during a strep infection does that affect how high the titers rise? Or do they still rise the same as they would with an untreated strep infection?

 

I will try to get some articles to her school administrator. To her credit, she began researching the internet as I was telling her about it. She had never heard of PANDAS/PANS before.

 

I will check into the NIMH study. Thank you so much for letting me know about it.

 

I am going to the PANDAS network right now to inquire about a doctor.

 

Thank you so much again for all your help!

[EAMom]

Your dd sounds like a textbook PANDAS case (acute onset correlated with positive culture/strep in household, classic symptoms, response to antibiotics, regression off antibiotics)!

 

Get throat cultures on all family members to make sure there isn't an asymptomatic strep carrier in the household.

 

Many girls don't get an elevated ASO (even with positive cultures):

http://www.latitudes.org/forums/index.php?showtopic=9495

"Only 15% of girls had elevated ASO or Anti-DNAseB over the course of the illness
Whereas 54% of boys had elevated ASO or Anti-DNAseB"

 

Note: PANDAS is NOT a reaction to ASO or anti-dnase b (the commonly tested strep titers)!

 

FAQ on PANDAS (recently updated):

http://www.latitudes.org/forums/index.php?showtopic=6266

 

Amoxcillin failure in strep throat http://www.urmc.rochester.edu/news/story/index.cfm?id=981

 

 

From P. Mom's visit with Dr. Cunningham (Univ. of Oklahoma) http://www.latitudes.org/forums/index.php?showtopic=9361&page=1

1. Strep titers are in NO way diagnostic of PANDAS. Dr. Cunningham says she "took care of that" at the OC conference. For a PANDAS diagnosis (meaning in relation to strep)... a positive culture OR high strep titers are needed for the diagnosis...however, the child may be tested to late to show either, or, may not mount enough of a response to show strep at all. It really is complicated.

2. Just because strep is not cultured from the throat does not mean that the strep is not elsewhere. Could be in the gut, sinuses....it could be vaginal or perianal. So, negative throat culture does not mean no strep.

3. Strep is not the only cause of the neuropsychiatric symptoms. Many other viruses/bacterias can result in the same type of syndrome...but, it is still the same type of autoimmune dysfunction/problem. You won't find strep anywhere in this case.....this would be the PITANDS syndrome. This can also produce high Cam Kinase.....particularly Lyme...it produces high Cam K results. In a viral cause of symptoms, antibiotics will not help...but, steriods can be given to bring the episode under control if the episode is bad enough. Strep induced (bacteria induced) episodes should resolve/diminish with antibiotics.


Cunningham Test (which is an actual test for PANDAS) http://www.moleculera.com/ (note: test not yet available in CA)

 

A good handout for you and your doctors:

http://www.ocfoundation.org/PANDAS/

 

Contact info for NIMH IVIG study:

http://clinicaltrials.gov/ct2/show/NCT01281969

Edited June 6, 2013 by EAMom

[EAMom]

For PANDAS kids, it is CRITICAL to keep strep out of the household. In the future, if family members have strep, be sure to recheck a culture 2-3 weeks after the last antibiotic dose to check if the strep has cleared.

[smartyjones]

EAmom -- wow!!

 

Many girls don't get an elevated ASO (even with positive cultures):

http://www.latitudes...?showtopic=9495

"Only 15% of girls had elevated ASO or Anti-DNAseB over the course of the illness
Whereas 54% of boys had elevated ASO or Anti-DNAseB"

 

do you have any thoughts on why that would be?

[Mayzoo]

Hmmm. My daughter presented with overnight symptoms during an episode of sore throat and fever. A stand in doc did not do a strep test, but gave abx. Fever and sore throat resolved, but PANDAS symptoms remained. Three months of research later and I find out about PANDAS. I take her to her regular pedi just to get blood work done and she has a positive rapid test then with no physical symptoms, and she remained positive for almost 60 straight days. ABX are given continuously, and her PANDAS symptoms *slowly* begin to resolve even while she is still positive for strep. After she becomes negative for strep, great strides are made in her symptoms. At that time her ASO was 6 and her antidnase was 95 (no streptozyme test). Fast forward 14 months, symptoms are still come and go and tank greatly with any infection. Her ASO was 9, antidnase was 86 and streptozyme is negative. Her immuno has not told me if he has directly reassingned her dx, but he has said that since she has very low strep antibodies, it is unlikely that those few antibodies are the cause of her issues, so he looked for other high antibodies that could be the cause, and boy howdy did we find some very high antibodies elsewhere.

 

What I gather from what you are saying EAmom, is that even with almost no strep antibodies present, you still feel that my child would be defined as PANDAS not PANS? Since it is antibodies that are the cause of the issues, I am not sure I get that. I will ask her immuno for a concrete dx at our next visit. Before seeing the blood work, he agreed she was classic PANDAS. Kiddo concretely had 14 of the 15 diagnostic symptoms as defined in January 2011. She likely had all 15 but it was difficult to tell if she was depressed with her expressive delays. She was out of the blue stating daddy and others could not love her, so is very possible she had all 15 SX.

Edited June 6, 2013 by Mayzoo

[EAMom]

smartyjones:

 

not sure. But Buster (I think) did ask some people (ugh, don't remember who, Swedo? Kaplan? a while back) if they had ever cut the data to see if there was a difference in boys vs girls with titers on their research and nobody had ever cut the data that way (with PANDAS or non-pandas). So, as far as I know, Buster is the only person that every noticed or looked at sex differences in strep titers. It would be great if we could get a "real" researcher to look at this phenomena!

 

Mayzoo:

 

your dd had positive rapid ( or cultures) as "proof" of strep, that is all you need. Your dd is PANDAS assuming the right symptoms (OCD etc) in association with positive cultures, response to antibiotics, etc. The low ASO/anti-dnaseb are irrelevant.

 

My dd's ASO never got above 30, despite positive cultures and PANDAS severe enough to require hospitalization (anorexia at age 7). 1 year later we did the Cunningham test (when not in an exacerbation) and she tested in the high PANDAS range. Her ASO at that point was in the 16.. A few months later we retested her Cunningham test (after H1N1, just before IVIG) and she was in the high SC range, the highest Dr. Cunningham had ever seen. So, for us as well, strep titers have been irrelevant.

 

There are situations (if your kid is one that makes ASO/anti-dnase b ) where titers can be useful, such as if cultures are neg, and you are looking for SOME evidence of a past or current strep infection.

 

"What I gather from what you are saying EAmom, is that even with almost no strep antibodies present, you still feel that my child would be defined as PANDAS not PANS? Since it is antibodies that are the cause of the issues, I am not sure I get that"

 

^^^^ASO, anti-dnase B are only 2 types of antibodies (the ones commonly measured) that might be produced by the body in response to strep. They are not the antibodies that causes PANDAS. http://www.latitudes.org/forums/index.php?showtopic=3756

 

1) Is PANDAS a reaction to elevated ASO or AntiDNAseB titers?
The research indicates no. ASO and AntiDNAseB are responses (antibodies) to exotoxins from Group A Beta-Hemolytic Streptococci. PANDAS is thought to be a reaction to another antibody that's created in response to the streptococci. The theory from Cunningham and Kirvan is that there is a monoclonal antibody that is created that targets a particular carbohydrate sequence on the streptococci. This monoclonal antibody is supressed in most people but for some reason it is not supressed in PANDAS kids.

 

and

 

One final comment, Swedo does not require high ASO titers or even rising ASO titers to diagnose PANDAS. The titers are checked only when a positive strep culture is not available and you are retroactively looking for an indication of past infection. The flaw with using titers as an indication of prior strep infection is (as I stated above) that "low" values can still be associated with prior strep infections since the rate of ASO titer decline is not known, most people only have a single sample, and the ASO response is variable across individual and strep type.

Edited June 6, 2013 by EAMom

[Mayzoo]

Thanks EAmom, I guess I should refer to her a PANDAS case with high viral titers as well. We never did a culture on her until we finally got a negative rapid. Then I had the office run the culture to make sure it was not a false negative. It came back negative as well. By that time she had confirmed strep for almost 60 days, and had likely had strep for near six months if not even longer . We, of course, are second guessing many things in the past that we will never have an answer for.