Useful Info on Strep Infections from Ronna

[Chemar]

Hi Everyone

 

I have copied and pasted some very useful info on strep infections from Ronna, who has had a lot of experience with this, and has done tons of research on PANDAS etc.

 

So maybe we can use this thread to discuss these issues, which do seem to impact a lot of people

 

Here is what Ronna wrote

Jeepers, I just don't know where to start when talking about strep. I mean serioiusly I could go on forever!

 

People with strep throat infections have a red and painful sore throat with white patches on their tonsils (you don't necessarily need to see white patches, though). A person may also have swollen lymph nodes in the neck, run a fever, and have a headache. nausea, vomiting, and abdominal pain can occur but are more common in children than in adults.

 

Once people become infected, they pass the infection to others for up to 2 to 3 weeks if they don't have symptoms. After 24 hours of antibiotic treatment, a person will not longer spread the bacteria to others.

 

 

For more information about strep:

 

http://www.niaid.nih.gov/factsheets/strep.htm

 

I will say that the throat swab will not always pick up a strep throat. The procedure for the swab is to do a "vigorous" swab of the back of the throat and oropharnyx and we all know that many docs will just do a quick in and out. I know it is uncomfortable but I always tell the doctor to do a very thorough swab.

 

When we realized our son was a PANDAS kid we had the whole family swabbed and to our amazement everyone came back negative except my one year old daughter who only had a bit of a runny nose.

 

Another time my younger son (not my PANDAS child) had ALL of the symptoms of strep throat but his swab came back negative. He was having some mild PANDAS symtoms which also disappeared with antibiotics. I watch my younger son very closely for strep throat and have him treated immediately if I suspect it.

 

As well I should say that my son with PANDAS (Kurt) never had any classic strep throat infections rather we suspect he had a chronic sinus infections instead. I have heard many other parents describe their PANDAS child as having chronic sinus infections as well.

 

All I can say is that if you think your child's tics, OCD etc appear in relation to a recent upper respiratory infection it is good to do a trial of antibiotics to see if the tics, OCD etc improve.

 

It is true that many children with PANDAS (and I think with TS in general) will have a worsening of symptoms with all viruses and illnesses. I have read that once the immune system is primed to overreact it will. For example, my son had a complete relapse of his tics, OCD etc with the chicken pox last January.

 

 

Hope this helps!

Ronna

[Guest ronna]

I thought I would post some more strep/PANDAS information since I have a quiet minute (sort of)...

 

I thought I would give a description of the tests used for PANDAS which are just tests used to detect whether an individual has strep or has had strep in the past.

 

STREP SCREEN

Throat Swab (Rapid Antigen test): The doctor or medical assistant wipes the back of the child's throat with a long cotton swab. In the lab, the swab is placed in a test tube with a chemical mixture that extracts part of the strep germ (the antigen) from the swab. This extract is then combined with antibodies to group A strep antigen (these antibodies are protein molecules that attach to the group A strep bacteria's surface antigen). When a third substance that detects the antigen-antibody combination is added to the tube, the liquid changes color if strep germs are present.

 

Culture and Sensitivity: The specimen for a thoat culture is taken in the same way, but the fluid from the swab is put inot a culture dish in which the bacteria from the specimen must be grown for 2-3 days before strep germs, if present can be identified.

 

The strep screen is about 75-85% sensitive.

 

A rapid strep screen can offer results in minutes, where as the throat culture tkes 2-3 days.

 

The symptoms of strep throat usually improve even without treatment in 5 days, but you are contagious for several weeks and there is also a risk of developing complications. Lack of treatment or incomplete treatment of strep thoat can lead to various complications.

 

Infectious complications:

-the active infection may occur in the throat, skin or in the blood.

-skin infections of the skin or soft tissues.

-scarlet fever is caused by the toxins released by the strep bacteria.

-toxic shock syndrome.

 

***During the infection, the antibodies (disease-fighting chemicals) are produced. After the organism is cleared, these antibodies can still cause disease in body organs (for example, PANDAS).***

 

-rhuematic fever

-glomerulonephritis

 

About 10-20% of people are carriers of strep, meaning that the bacteria lives in the back of their throat without causing infection. And although the strep isn't causing any problems, if you test someone who is a carrier, the test will be positive. The best way to avoid being overtreated with antibiotics when you are a carrier is to avoid being tested when your child doesn't have classic symptoms of strep thorat. your doctor may also decide to use a stronger antibiotic as treatment so that your child is not a carrier anymore.

 

Tonsilectomiew used to be done much more than they are now. The current indications for tonsillectomy for recurrent strep throats is having 5 or more episodes of strep throat in a year, or having 4 episodes each year two years in a row.

 

BLOOD TESTS

 

Streptozyme: Detection of multiple antibodies to extracellular antigens of streptococcus with streptozyme is of some diagnostic value but should never replace more standard tests such as streptolysin O antibody (ASO) or DNase-B antibody. These antibodies may be detected in patients after streptococcal pharyngitis, rheumatic fever, pyoderma, glomerulonephritis, and other related conditions. In evaluating a patient with suspected acute rheumatic fever or nephritis, determination of ASO, DNAse-B antibody, and streptozyme will likely yield a positive result in 92-98% of cases.

 

Streptolysin O Antibody (ASO): the ASO test is used to provide serologic evidence of previous group A streptococcal infection in patients suspected of having a non-suppurative complication, such as acute glomerulonephritis or acute rheumatic fever. Use of the ASO for diagnosis of an acute group A streptococcal infection is rarely indicated unless the patient has received antibiotics that would render the culture negative. An ASO performed on serum obtained during the presentation of a non-suppurative complication that shows a titer two dilutions above the upper limit of normal is evidence for an antecedent streptococcal infection. It is recommended, however, to use a second test such as the anti-DNase B to confirm antecedent infections. Elevated serum ASO titers are found in about 85% of individuals with rheumatic fever. When both ASO and anti-DNase B are used, the result is over 95%. Skin infections with group A streptococci are often associated with a poor ASO response.

 

Reference Interval:

0-1 year: 0-200 IU/ml

2-12 years: 0-240 IU/ml

>13 years: 0-330 IU/ml

 

DNase-B Antibody: The majority of group A streptococci produce significant quantities of DNase-B, while most other groups of streptococci do not. High levels of neutralizing antibody to DNase-B are commonly found in patients following a group A streptococcal infection. Since it persists longer than other streptococcal antibodies (2-3 months), it is the preferred test in patients with chorea suspected due to rheuamtic fever. Since it is not influenced by the site of infection, DNase-B antibody is more reliable than the ASO test in providing evidence for streptococcal infection in patients with post-impetigo glomerulonephritis. Elevated titers are strongly suggestive of recent or current infection with group A streptococci. Fourfold increases in itier between acute and convalescent samples taken approximately 2 weeks apart are confirmatory.

 

Reference Interval:

 

1-6 years: < 1:60

7-17 years: <1:170

18 years and over: <1:85

 

So these are the "tests" for PANDAS which are not actually tests confirming PANDAS but rather the presence of a streptococci infection in association with the onset of neuropsychiatirc symptoms in a child.

 

I thought I would post this as a reference for someone new to PANDAS so they can understand what is being tested for.

 

BTW in Canada if the streptozyme is negative they do not do the ASO (this is what I was told). Our son's streptozyme came back negative so the ASO was never done. Kurt had a anti-DNase B ordered during his first hospitalization and it was never done. I only discovered this when I was reviewing his medical records.

 

Hope this is of interest to someone.

I will try and post information about PANDAS in the next few weeks as time permits.

 

Ronna

[Claire]

This is great stuff, thanks!

 

But I thought that the PANDAS tests (as opposed to the strep tests), were just to see whether the person had developed the 'bad' proteins that attack the healthy brain cells, ie the potential marks of a secondary auto-immune issue from the strep. ie the immune issue is the problem well after the strep is gone. Can you please clarify? (I have read that proper treatment during the first episode can avoid a more permanent problem)

 

SOMEWHERE in this link, there is some study where have of the kids with tonsil infections didn't test positive for strep and still had the PANDAS symptoms.

 

http://www.neurotransmitter.net/pandas.html

 

This could be the inaccuracy of the swapping for the strep test that Ronn mentioned--my husband tested positive for strep, and my son got the sore tonsils at the same, but he said the nurse 'missed' his throat with the swap--he is very attuned cuz he hates that swab--sure enough, his test was negative, but the antibiotics cleared it up immediately.

 

Plus My ENT says their are lots of bacterial infections in the tonsils that do require antibiotics, and strep tests only ID one of them.

 

Finally, my ENT totally agrees re the probiotics--he takes them himself with pills for the complete strain.

 

Claire

[Guest Ronna]

Claire,

 

I have answered your above questions at braintalk communities. It is difficult to post the volume of information I want to write in 2 places. Tourette's Now What has posted many good links about PANDAS and I have discussed treatment guidelines in Canada, the use of antibiotics, and "our story" if anyone is interested.

 

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

 

Take Care!

Ronna

[Guest Ronna]

Sorry I don't know how to "edit" my post on this forum... the thread is at:

 

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

 

Ronna

[Guest Ronna]

YIKES...one more try and then maybe someone else can do it for me as I seem to be doing something wrong...

 

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

 

Ronna

[Guest Guest_efgh]

Ronnas, that is a fantastic piece of useful information. My son has had several kinds of sore throat almost persistently during childhood. But his tics have never been rapid after or during the onset. it almost seems to be constant. should i still think of PANDAS. recently a throat swab (normal not the extensive) was done and it returned negative for strep. should i push the doctor further for an exhaustive test, what is your opinion.

Read your full story in braintalk and its amazing to see your son's improvement. Really happy for you. Is your son still on antibiotics and if so for how long should he be on them? How are his tics/behaviours/moods now? Is he on any other TS medication?

[Guest Ronna]

Hello!

 

I wish I had all of the right answers for you. I will give you my opinions on PANDAS and you can take it for what it is. I don't know if strep was the culprit for our son, the appropriate throat swabs and blood tests were not done at the right time. My feeling is that his throat swab would have come back negative as I think a chronic sinus infection was the problem. As a family we were ALL ill that year and I imagine we were all just constantly passing the germs around. Now that Kurt has been on antibiotics for a year we are all so much healthier and it is only with hindsight that we realized everyone was so sick and this was not normal. When I realized some sort of infection was most likely the problem I made the doctors treat us all with antibiotics. (This was helped by the fact that my one year old daughter did come back positive for strep).

 

I have noticed some very mild PANDAS symtoms in my other 5 year old son (Matt) which shows itsself mostly in his behavior, general moodiness, separation anxiety, and a "quirky" habit of "picking" at his "Winnie the Pooh" blanket...I know he will get sick if I start finding "fuzzies" on the floor. I watch Matt very closely. He does not have any tics, or learning disabilities. I suspect there are MANY children who are affected by strep and infections but the MAJORITY are not seen by doctors as the symptoms are so mild and they improve with antibiotics and once the infection/virus is gone. I would NEVER have been aware of these issues in Matt had I not gone through what I did with Kurt.

 

You asked, "should I think of PANDAS?" Yes I think so but the situation is complicated as all the research focuses on strep. There is some literature about PITANDAS (neuropsychiatric illness triggerd by infections not just strep). The research into PANDAS is in the very early stages and I think it would make sense that other infections could cause the same symptoms but the reason strep is focused on is that there are easy, fairly reliable tests for it.

 

I am not sure if a doctor would go for this but if it were my child and knowing what I know now I think it would be worthwhile to do a trial of clindamycin (a good broad spectrum antibiotic). At the very least I would not use a penicillin because I have read about other children not responding to it. The initial study at the NIMH looking at prophylactic antibiotics was inconclusive because pen vk was used (my son has never reponded to Pen VK). They are now studying azithromycin which would be another antibiotic you could try. If your son is a PANDAS kid he should show some improvment on the antibiotics. I don't know much about your history but it is good to read about rheumatic fever, Sydenham's chorea in relation to PANDAS. As well it is important to learn about Lyme disease as this can be a possibility for some PANDAS kids (my opinion again).

 

In my opinion it would be worth a trial of antibiotics as the change in my son was DRAMATIC and as I have said before would have prevented so much heartache had he received them much earlier. My son responds to antibiotics by day 5 and begins to regress if they are stopped by day 3. He has been on antibiotics almost continuously for the last year and the struggle to get the doctors to believe this has been hard. We finally have a wonderful pediatrician who does respect me and my ability to assess my son's reaction to antibiotics. We have an appointment with an infectious diseases doctor tomorrow morning. I learned long ago to not get my hopes up but it would be soooo nice if this doctor could give us some answers and a plan for Kurt's long term treatment. It has been recommended that we keep Kurt on prophylactic antibiotics till he is at least an adult because of the rheumatic fever (he has a mital valve regurgitiation) so we do not have to debate with the doctors about the use of prophylactic antibiotics for PANDAS.

 

At present Kurt is on 300 mg clindamycin three times per day. He no longer responds to Keflex which worked well for him for a long time. In November our pediatrician didn't overly believe me that the Keflex was not "working" and he was regressing. He had been on Orap at a very low dose (.25 mg once a day) for a long time. I decided to stop all suppplements, antibiotics, and the Orap so we could start from scratch. This was done in close consultation with our pediatrician so he could be well aware of the changes in Kurt. During this time I realized that a component to all of this was a casein allergy so first I eliminated all dairy, casein etc. This helped with his behavior and motor hyperactivity (he does not have ADHD) and he was not having the mood swings and his behavior was easier to handle...it felt like we were half way there. His symptoms continued to be tics which were getting worse each day and a more noticeable vocal tic as well as the return of some of the OCD behaviors (an intolerance for bodily secretions such as a runny nose) and the return of a severe separation anxiety.

 

So we started a trial of antibiotics (clindamycin) and again by day 5 we started to see lots of improvement with the OCD and separation anxiety disappearing. His tics are again at a minimum, just a slight head nodding tic when he is tired or watching TV and just today I noticed that his vocal tic is not noticeable. He is not on the Orap any longer and I hope that he never is again.

 

I hope this helps and let me know if you have anymore questions.

 

Ronna

[Guest Guest_efgh]

thanks ronnas for your informative reply. So, should i take it that one can start on antibiotics AFTER doing a thorough strep test?? From what I read, I gather that one can randomly try an antibiotic to see an improvement if any without doing the strep test..Have i understood it correct? you mean antibiotic like amoxycillin or specifically clandamycin??

thanks and sorry for my ignorance.

[Guest Guest_efgh]

Also, wanted to find out if you all have heard of any relationship between thyroid (hyperthyroidism and tics). pasting from an authentic website

http://www.aafp.org/afp/990415ap/2263.html

 

The second step in management is to rule out the secondary causes of tic disorders. The degree of inclusiveness of the work-up for Tourette's syndrome depends on the patient's history, the family history and specific patient characteristics.26-29 A complete general physical examination, with specific attention to the neurologic part of the examination, is a prerequisite. The thyroid-stimulating hormone (TSH) level should be measured in most patients, since tics often occur concomitantly with hyperthyroidism. A throat culture should be checked for group A beta-hemolytic streptococcus, and an antistreptolysin-O (ASO) titer and levels of anti-DNAse B should be obtained in patients with a very rapid onset of symptoms or symptoms that appear to wax and wane with bouts of pharyngitis or otitis media. The correlation of microbiologic and serologic evidence of streptococcal infection with a single occurrence of tic exacerbation is insufficient to make a diagnosis of streptococcus-induced, autoimmune-caused Tourette's syndrome. Such findings are likely to be nonspecific, especially in a pediatric population. A pattern of correlation that varies over time with the presence or absence of symptoms would be more convincing.

 

also pasting from medscape.net

Aside from a thorough history and physical with detailed neurologic exam, the work-up to distinguish primary tics from secondary tic disorders depends on the history and presentation. Some clinicians recommend checking the level of thyroid stimulating hormone (TSH), as tics can occur with hyperthyroidism (Bagheri et al., 1999). A throat culture and antistreptolysin-O titer (ASO) or antiDNaseB (Bagheri et al., 1999; Leckman, King, Scahill, et al., 1999) are recommended in patients with sudden onset of symptoms after a bout of pharyngitis, impetigo, or otitis (see discussion of PANDAS

[Guest Guest_efgh]

Ronnas and others,

 

so have you all heard of relation between tics and thyroid??? any info or experiences on that would be of help.

also,

 

as per the article i mentioned, strep tests are recommended. Ronnas, in your case, did you do the strep tests and find out that there was a problem with the levels of antistreptolysin-O (ASO) titer and levels of anti-DNAse B and then start antibiotics. My doubt is "are these values the predetermining factors to find out if there is PANDAS or not" or is it not 100 percent reliable. I want to be quite clear with my pediatrician when I suggest him these things since he seems TOTALLY unaware of this stuff. He would be willing to take the test, etc though.

and also the article which I pasted mentions "SUDDEN ONSET FOLLOWING STREP" which is not the case and hence wanted to be quite sure and educated when I talk to him.

thanks and SORRY to bother you again on the same thing.

[Guest Jennifer]

efgh,

 

In Dr. McCandless' book " Children with Starving Brains" , she lists her entire protocol and all the tests that she does- thyroid is one of them. I don't know if there is a direct correlation between thyroid dysfunction and tics, but generally children with tics have other health issues as well. Dr. McCandless has said that here protocol is for anyone on the spectrum and as far as she is concerned TS is on the spectrum as well.

 

Jennifer

[Guest Guest_efgh]

I do not much about rheumatic fever. Did your son get it before the onset of tics/ocd?

I am planning to call my doctor casually and find out his opinion on this. Can you please advise me what I should say if he says "

Since MOST OF THE KIDS (with or without TS) would have had a LOT of sore throats/sinus infections before TS diagnosis, should all the kids who have got sore throat think of PANDAS? " Can you give me some tips to convince him on this .

[Guest Guest_efgh]

In my previous note please read "should all the kids who have got sore throat think of PANDAS? as "should all the KIDS WITH TS who had got lots of sore throat/sinus infections think of PANDAS".

[Guest Guest_efgh]

Jennifer,

 

Did you do the thyroid/strep tests as well for your son? What is the general protocol/tests that she mentions in the book?

thanks