PANDAS

[Mos]

I am joining this forum in need of help from all of you PANDAS experts. I am living in Germany with my family and have had zero success with PANDAS here. My Dr. from the states helped diagnose my son in January after months of trying to figure out what was going on. She advised us to treat our son with amoxicillan twice a day to prevent the strep. We have been doing this until now and everything was going fantastic..! no strep, no tics, no OCD....I thought we were out of it. Now my 5 year old son has started with slight tics again and some behavior issues. I will take him tomorrow to test for strep....My question to you would be what happens next..???If he tests positive to strep..do we change antibiotics? or if he tests negative to strep..do we change antibiotics..( He does not have symptoms when he carries strep..that is a big problem..so I don't know if he has strep..sometimes he carries it in his rectal area) The Dr.s here have never heard of this so I am really struggling...I email my Dr. back home which is nice but I am worried what my next will be.. Thanks so much for your help and response.

[butterbean]

Hi. I am NOT in any way an expert on PANDAS, but in addition to the strep bacteria, our pediciatrician ran a blood test to determine if strep antibodies were present -- and they were. It is the strep antibodies that would effect the basal ganglia of the brain if I understand correctly. You should request to have that test run on your child. Evidently the strep infection can be gone, but the strep anitbodies can remain. (please someone correct me if I am wrong here.) Our daughter was diagnosed with TS with OCD tendencies. She is 6YO. I hope someone else replies with more specific information for you. God Bless.

[kim]

Dr. Amy Yasko on Strep

 

http://www.autismanswer.com/articles/yasko...citotoxins.html

 

 

 

Blood Type/Streptococcal Infection

 

The A-B-O system for blood typing is dependent on the blood group antigens that are expressed on the outer surface of an individuals' red blood cells. Those with blood type A have NAC-gal (n-acetyl galactosamine) as the predominant blood group antigen, and those with type B have galactose as their primary antigen. Those with blood type O have fucose as a predominant antigenic determinant on their red blood cells. In addition, to a lesser extent the NAC-glu (n-acetyl glucosamine) antigen would be accessible to the immune system in those with blood type O due to the limited carbohydrate antigen on the surface of type O red blood cells. It is necessary for the body to discern the difference between self and non-self, and to prevent the immune system from attacking self. As a consequence of this "tolerance" to self, those with blood type O would have a higher tolerance to NAC-glu, and would not have as high a natural tolerance to NAC-gal and galactose as would those with blood types of A or B. Similarly, those with blood type A would have a higher "self-tolerance" to NAC-gal.

 

The major carbohydrate antigenic determinants on the surface of the streptococcus bacteria are predominantly NAC-glu and NAC-gal. As a consequence, persons with blood type O and type A would have an initial greater natural tolerance to infection from streptococcal bacteria. After repeated exposure to the streptococcus bacterium, an immune response would finally be mounted, and targeted against the antigenic determinants on the bacterium. When this happens the immune cells of the body inadvertently launch an autoimmune attack upon body tissue with antigenic determinants that are similar to the antigen on the surface of the streptococci. This reaction to the NAC-glu and NAC-gal on the surface of the streptococci could also lead to an autoimmune type reaction against the NAC-glu/gal in the GI tract. This process has been recognized since the middle 1980's and is known as molecular mimicry.

 

The excessive shedding of NAC-glu and NAC-gal, otherwise referred to as GAG has been described and well characterized by others. Suffice to say that the shedding of GAGs in the GI tract is enhanced with immune activation and inflammation. Following infection and/or inflammation, the body would need to replace GAGs that have been shed, as well as to sulfate them. If there is a sulfur deficiency in the body, this would lead to undersulfated GAGs in the GI tract along with the deficiency of other sulfur related proteins in the body. Nitric oxide has been shown to inhibit sulfation of GAGs. High levels of nitric oxide are a consequence of excitotoxin damage.

 

Generally, bacteria elicit a B cell mediated immune response, and viruses elicit a T cell mediated immune response. However, a large number of extracellular toxins are elaborated by streptoccocci, all of which have the ability to nonspecifically stimulate T cells. Therefore once an immune response is mounted against streptococcus it would involve both T cell and B cells resulting in a major inflammatory reaction.

 

One particular extracellular enzyme produced by streptococcus is a sulfhydryl protease. This protease is capable of cleaving sulfhydryl groups and may lead to a deficiency of available sulfur containing moieties in the body following streptococcal infection. These sulfhydryl groups are involved in the binding and elimination of heavy metals in the body. Streptococcal infection is also known to lead to elevated levels of the inflammatory cytokines NFKB and TNF alpha. In addition, the level of TNF alpha is inversely correlated with glutathione levels. Consequently, high TNF alpha levels as a result of streptococcal infection would result in decreases in glutathione levels.

 

Streptococcal infection is also associated with a wide variety of behavioral disturbances. High levels of TNF alpha (as a result of streptococcal infection) have been implicated in Tourettes syndrome, facial tics, obsessive compulsive behavior, and schizophrenia. On a related note, lithium (the most popular prescription drug for treating the mood swings associated with manic, or bipolar depression) has been demonstrated to act by protecting the brain from over stimulation by glutamate. Excessive levels of glutamate have also been implicated in drug craving and in addictive behavior.

 

Consequently, the net results of streptococcal infection are depletion of Vitamin K levels, decreased glutathione levels, decreased sulfhydryl protein levels, over stimulation of the immune system, increased TNF alpha levels (which trigger OCD, facial tics, etc.), potential autoimmune responses and inflammatory reactions against the GAGs in the GI tract.

[kim]

A parent on ASD solutions was saying that her DAN! Dr. consulted with Usman (former exec director of Pfeifer Institue) and her theory was that the strep was in the gut provoking the autoimmune reaction and would not show on a throat culture. Her son had negative cultures and no sore throat, yet had 3 acute episodes of PANDAS.

 

She goes on to say that Immonosciences Lab (Dr. Vojdani) out of California has developed a

PANDAS panel which is a much more effective test for PANDAS and her sons titers always turned up high on that test.(as well as myelin basic protein, B cells etc.)

 

She posted this link

For more info on the PANDAS panel, see:

http://www.immuno-sci-lab.com/2003_cat_page115.htm

 

http://www.cidpusa.org/PANDAS.htm....This link is probably already here somewhere, but thought I'd post it again. Basic PANAS's info.

[kim]

Mos

 

Sorry I keep posting general info. on your thread. I wanted to tell you, if you go down to the bottom left, you will see pages. Go to page 4 and you will see "ad ccl" on the page about 1/2 way down. Click on those initials. Then you will get a page that says Profile Options in the top right. Click on that, and it will say...find members posts. That will bring up all of Alison's posts. You can do the same thing for Ronna. Also, you can just use the "pages" option to search threads with PANDAS titles.

 

Alison said she has used Amoxicillian and biaxin, I believe, but you will get a lot of details if you search the posts I mentioned. If you have any trouble, just holler. I know it's hard dealing with these problems, not to mention being out of the country.

 

Kim

[ad_ccl]

Hi Mos and Kim,

 

Kim you are amazing with all the info you post...thanks so much! I am still reading frequently but life if busy with three little ones so I am not posting very often - and in general things are going well with my son - he is generally tic free and behaviour is fine - the last couple of days he has had a vocal tic emerge - a hmmm sound when eating - other than that he is fine - we have been sick with colds etc so I am assuming that is what he is fighting and I am not stressed about it as I know it will pass quickly. No other tics.

Anyway - just to reply to Mos - we are still on prophylactic amoxycillin - 5 mg once a day - and have been for a year and a half, prior to that we did a 5 month stint on full dose biaxin and amoxyclin - (not both at the same time, alternating) knowing what I know now - I do think that we caused a yeast problem with the antibiotics as we were not using probiotics at the time - at first my son was doing really well then the tics were coming on strong again even while on the full dose antibiotics - I believe now it was yeast related - once we went on a lesser dose of antibiotics ( which I was so scared to do at the time) and we started on the alternative route - vitamins, probiotics, food elimination and no screens - we have seen continued improvement - we have been tic free many many times for extended periods of time - and when tics do emerge they are from an immune response to a viral infection - like a cold (and are usually so subtle no one would notice.) Or...from food exposure although this is happening less - but in the past he would start to tic 1-2 days after pizza day at school - last pizza day there was no reaction.

We have not re-tested strep titers for a long time but will be soon - each time his numbers were way off the charts - I have written to NIMH and got some info back but nothing to really explain why his numbers remain high. I am hoping the next time we test they will be significantly lower. We are still planning on taking him off the antibiotics in June after the school year ( yikes!) and see how he does. Scary to think of a strep infection - but I am hoping with his body being so much stronger and a few years older we would not have the same results as our initial strep infection. If he does get an infection then I will have him back on the prophylactic antibiotics and keep him on for as long as I can!

 

Mos - just re-read your post and realize I have not really answered your question - my best guess if that if he does have strep again then the antibiotics are not preventing it from occurring, many people do not feel proplylactic antibiotics work at all - if he does not have strep than I would guess there is something else causing his immune system to react - either an overgrowth of yeast, a viral infection, food allergies which may be coming out more now than in the past - many things could be going on. My son when he is sick often has no 'normal' symptoms, instead he has subtle tics now - in the past they were not so subtle! We have come a long way thanks to the info I have learned from this site. Please feel free to ask any questions after you have read some of my earlier posts. Good Luck.

[Mos]

Thanks, Butterbean, Kim and ad_ccl,

Thank you so so much for your time and information....I am learning so much..hopefully with everyone's experience..I can guide the Dr.'s here on the best treatment that I want to pursue..No one hear has ever heard of it or believes it. Anyway thanks again..I am off to reading some more....Take Care

[Mos]

I am not sure if I am replying appropriately..Here goes..

Allison,

I just read all of your post...thanks to Kim's suggestion. I feel so overwhelmed...I keep thinking that this is happening to everyone else but not me..I can't explain it..I guess I am at the beginning..I really thought this was the end of it..but now realize this may just be the beginning. I just want to give you some history...Last Oct. I knew something was wrong with my then 4 year old son....not feeling well, night sweats, immpetigo, he then began with an eye tic and some small obsessions like wanting to draw all day... I would take him in and they said he is fine.no strep.Finally I took him to the hospital here in Germany and demanded they do a complete blood sample, ekg on his heart until they found out what was wrong..They discovered he had strep. My Dr. back in the states diagnosed him on the telephone and then we went home and she told me it definitely has PANDAS. In Jan.she decided to treat him with proplylactic antibiotics(amoxicillian twice a day). Everything was going fine until two weeks ago a slight eye tic has come back..everything else is ok. We just had a blood test to see if he has strep??waiting on results. We all just had a stomach virus so the eye tics may be from that. I guess I have so many questions::

1. Does this mean we have a mild case? since he just has eye tics now or can it get worse?

2. How long does this disease typically last?..How old is your son?

3. I will schedule an appointment with an allergist? Is this the right person to check for all of the allergies?

4. How do I know if he has damage to his basal ganglia?

5. Should I change antibiotics if the tests come back that he does not have strep?

6. What is probiotic?

 

 

I hope I am not overwhelming you with the questions...Since the Dr.'s don't know about PANDAS, I am going to have to tell them how I want to treat him.

 

Thanks so so much for all of your help. I am so scared and feel really isolated since I am not home in the US.

Thanks Mos

 

Hi Mos and Kim,

 

Kim you are amazing with all the info you post...thanks so much! I am still reading frequently but life if busy with three little ones so I am not posting very often - and in general things are going well with my son - he is generally tic free and behaviour is fine - the last couple of days he has had a vocal tic emerge - a hmmm sound when eating - other than that he is fine - we have been sick with colds etc so I am assuming that is what he is fighting and I am not stressed about it as I know it will pass quickly. No other tics.

Anyway - just to reply to Mos - we are still on prophylactic amoxycillin - 5 mg once a day - and have been for a year and a half, prior to that we did a 5 month stint on full dose biaxin and amoxyclin - (not both at the same time, alternating) knowing what I know now - I do think that we caused a yeast problem with the antibiotics as we were not using probiotics at the time - at first my son was doing really well then the tics were coming on strong again even while on the full dose antibiotics - I believe now it was yeast related - once we went on a lesser dose of antibiotics ( which I was so scared to do at the time) and we started on the alternative route - vitamins, probiotics, food elimination and no screens - we have seen continued improvement - we have been tic free many many times for extended periods of time - and when tics do emerge they are from an immune response to a viral infection - like a cold (and are usually so subtle no one would notice.) Or...from food exposure although this is happening less - but in the past he would start to tic 1-2 days after pizza day at school - last pizza day there was no reaction.

We have not re-tested strep titers for a long time but will be soon - each time his numbers were way off the charts - I have written to NIMH and got some info back but nothing to really explain why his numbers remain high. I am hoping the next time we test they will be significantly lower. We are still planning on taking him off the antibiotics in June after the school year ( yikes!) and see how he does. Scary to think of a strep infection - but I am hoping with his body being so much stronger and a few years older we would not have the same results as our initial strep infection. If he does get an infection then I will have him back on the prophylactic antibiotics and keep him on for as long as I can!

 

Mos - just re-read your post and realize I have not really answered your question - my best guess if that if he does have strep again then the antibiotics are not preventing it from occurring, many people do not feel proplylactic antibiotics work at all - if he does not have strep than I would guess there is something else causing his immune system to react - either an overgrowth of yeast, a viral infection, food allergies which may be coming out more now than in the past - many things could be going on. My son when he is sick often has no 'normal' symptoms, instead he has subtle tics now - in the past they were not so subtle! We have come a long way thanks to the info I have learned from this site. Please feel free to ask any questions after you have read some of my earlier posts. Good Luck.

[kim]

Alison/Mos,

 

I'm so glad to hear some of the stuff I post is interesting to you. I never knew I could fall asleep sitting straight up! The tops of my arms on the underside are going to swat me right in the face as I try to use a hose this summer though. Confiscated Easter candy and research are depleting me of some nutrient and it appears it's making my hind end bigger. I googled it, and exercise came up, but there is so much misinformation out there....I'm not buying it

 

Glad you and yours are well Alison.

 

Mos, don't feel alone! I'm going to let others with PANDAS experience answer what they have time for, and if everyone is busy, I'll see which of your questions, I may be able to help with.

 

 

Kim

[ad_ccl]

Hi Kim and Mos,

 

Kim I can only imagine the hours you spend in front of the computer. I try and read all of your posts but so much goes over my head. You seem to have really got a handle on so many different things. I love the easter chocolate myself so buy some and hide it and eat it when no one is looking.

 

Mos - I will try and answer your questions.

 

1. Does this mean we have a mild case? since he just has eye tics now or can it get worse?

 

- My understanding of Pandas is that there is often a sudden and severe onset or increase of symptoms - where you can look back and remember the day the tics or OCD occurred. This was certainly my experience - ( the last Monday of August when he had just turned 6) My son did have previous transient tics - throat clearing, eye blinking prior to the sudden onset - tics were never complex and were only one at a time and were not severe, but that Monday he woke up and the tics that emerged were like nothing I had ever seen before - severe motor and vocal tics - simple and complex tics - his body was in constant motion, tics I had never seen before or believed were possible to keep up - I was exhausted watching him. I think now that the throat clearing tic which had been the most constant thing since he was 3 - and has not come back since going off dairy - was in fact a dairy allergy. The transient eye tics I now think are allergy related as well - they have come back a few times, his eyes under the lid are red when it happens and within a few days on allergy eye drops the tics go away. I feel like he is ultra sensitive and small irritations can lead to tic like movements. This used to happen with chapped lips last winter as well, he would do a mouth stretching tic like thing but only when his lips were chapped, once healed he would stop. Three days into the full dose antibiotics the tics were 95% gone, after the run of antibiotics he was ok for a few days then the tics came back strong again. Back on antibiotics things got better - ultimately I think things deteriorated again due to yeast overgrowth. I won't tell the whole story again if you have read my posts...

 

 

2. How long does this disease typically last?..How old is your son?

 

My son is almost 8 - it has been just over a year and a half since his PANDAS diagnosis. It is a pediatric illness so from all that I have read etc and what I choose to believe is that he will get better - he already is so much better. We think my older brother had this as well - to a less severe extent - he only did eye blinking - and it was assumed it was a nervous habit - he had other behaviour things - he is fine now. Currently no one would notice anything is different about our son.

While almost two years seems so long, we have never been with severe tics other than the initial onset and the weeks following. Since last January when we started on the alternative path he has been doing really well - ups and downs and slowly more ups than downs. Since this past January things have been great - the odd blip but they are all minor and short lived and again no one by us notices. He has lots of friends and does well in school and in sports. All round normal kid.

 

3. I will schedule an appointment with an allergist? Is this the right person to check for all of the allergies?

 

We did our allergy testing with a naturopath. It is the IGG testing - delayed food sensitivity testing that needs to be done - ELISA testing. Not the pin prick immediate response testing. Food allergy's can take up to 3 days for the body to react to which is why my son was reacting to pizza day a couple days later.

 

 

4. How do I know if he has damage to his basal ganglia?

 

This was my biggest fear!!!! I now believe there has been no damage to my son's basal ganglia as he has been tic free on many occassions - I was sure that the severe onset he had must have done some serious damage as it was a symptom of his body attacking his brain. I think these kids are young and their brains are quick to repair. I do not have any fear of permanent damage at this point.

 

5. Should I change antibiotics if the tests come back that he does not have strep?

 

If he does not have strep and it is a viral infection or yeast or something else causing his current symptoms there is no reason to change the antibiotics. From my understanding amoxycillin is the best for longer term use - I do know Ronna's son did not respond to it and they used Keflex with success. If he does have strep than it may make sense to try another round of a different antibiotic. That is what we initially did when we switched to Biaxin.

 

6. What is probiotic?

 

Antibiotics kill the good and bad bacteria. Good Bacteria is important and without it you can end up with a yeast overgrowth and then leaky gut - leading to food sensitivities among other problems. Acidophillis is a probiotic - if you go to a health food store they should have probiotics - I highly recommend going on them with any antibiotic use. It took me 5 months to figure it out. I started it once but saw a slight increase in tics so stopped - for fear of "the alternative medicine' I realize now he was having some yeast die off - making symptoms slightly worse for a short period of time.

 

Rememeber - PANDAS is an auto-immune disorder - I think this is key. There is something messed up with his immune system and that is where to start. Heal him by keeping him as healthy as possible, we started on supplements, no dyes, no junk food. We also found the tv a trigger so removed screens then replaced with LCD screen. You are at the beginning of the journey and there is no quick overnight fix - although I kept hoping for one and wished the antibiotics just fixed him. We have learned so much and I think are all better off from having gone on this journey. Have you ordered Sheila's book from this site? It is a great book as a resource and will help you figure out triggers etc.

 

Please keep asking questions, I am happy to answer.

[kim]

Alison,

 

Just wanted to quickly say God Bless you for that response. If I were in Mos shoes, that would be just what the "humhum" Dr. ordered.

 

I also wanted to tell you that I don't understand everything I post either....but in regards to Dr yasko's PANDA"S excerpt, I did think it would be interesting to know what blood types our kids have. Is there an over abundance of any type? I'm still not convinced that PANDA's is (all) about abrupt onset. It will be interesting to see what research kicks up in years to come.

 

The other thing is, I'm wondering if this section might not be a good case for using epsom salts, since they provide sulphur, during a flair related to strep?

 

**********

One particular extracellular enzyme produced by streptococcus is a sulfhydryl protease. This protease is capable of cleaving sulfhydryl groups and may lead to a deficiency of available sulfur containing moieties in the body following streptococcal infection. These sulfhydryl groups are involved in the binding and elimination of heavy metals in the body. Streptococcal infection is also known to lead to elevated levels of the inflammatory cytokines NFKB and TNF alpha. In addition, the level of TNF alpha is inversely correlated with glutathione levels. Consequently, high TNF alpha levels as a result of streptococcal infection would result in decreases in glutathione levels.

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

 

This may be really simplistic thinking on my part but just thought I'd mention.

 

Kim

[Sunshine]

Hello everyone! It has been a long time since I have posted, although I read every day. Without all of your efforts at posting, I realize that the rest of us would not be learning all that we are. Thank you!!!!

 

Mos - I was in your exact spot only 4 months ago. It is a very SLOW road to recovery, but it seems, so far, to be making a difference!! My son and I both get overloaded with frequent appointments to doctors, naturopaths, allergists etc..., so we are proceding one small step at a time. It is still overwhelming at times, but we are more optimistic than ever before.

 

Here's what we have done:

 

* No screens.

 

* No artificial colours, flavours, preservatives.

 

* Epsom salts baths... (Kim, I agree with your theory/reserach!).

 

* Supplements, including enzymes, probiotics, cod liver oil, calcium/magnesium, multi vitamin, + vitamin C.

 

* Allergy testing for delayed food sensitivities (started with vega test. Will do IGG in May). We pulled out dairy, gluten, soy, chocolate, and other things from his diet.

 

* We have tried a few antibiotics, but he has only done the 5 - 10 day course. It's hard to think about putting him on them now, as his tics are minimal.

 

 

What we still need to do:

 

* Test for specific vitamin and mineral deficiencies.

 

* Test the leves of strep titers.

 

* Test for heavy metals.

 

* More specific test for yeast.

 

* Test for Pylouria.

 

As you can see, it is a huge undertaking!! However, we have seen such a change in our son with all of the things that we have tried. It's hard to pinpoint what has been the most helpful. I do think it's a package deal, and that everything is doing a little part in healing his system. Interestingly enough, we began this journey to get rid of the tics. We continue this journey to make his immune system stronger... tics or no tics. Some of the changes that we have seen in our son have nothing to do with tics/OCD. For example, his facial colour is soooo much better. As well, he no longer has dark circles under his eyes. Also, his eyes are more aligned now (he has muscular eye problems... does anyone else have this???). He still has a long road ahead, and we may try another round of antibiotics, but we're taking it slowly.

 

Best wishes everyone!!

[Ronnas]

Hi there, I actually can't imagine a time when I had so much time to reply to posts, it has taken me days to reply to your post just by working on it a minute here and there! so if it doesn't make sense please forgive me...now...I need to saythat I don't want anyone to think that I am a PANDAS expert...I'm not! I have read alot about it, talked to doctors, but mostly I am just an expert on my son, not on PANDAS or TS.

 

Two good journal articles about PANDAS are:

 

http://pediatrics.aappublications.org/cgi/...ype2=tf_ipsecsh

 

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

 

 

The clinical value of PANDAS rests on the promise of antibiotic treatment, and here the results of controlled trials have been, at best, inconclusive. Penicillin prophylaxis in one controlled study didn't prevent exacerbations of tics and OCD, but it didn't prevent streptococcal pharyngitis either. For now, the most compelling case for the value of antibiotic treatment comes from an uncontrolled study of 12 kids who met PANDAS criteria and improved with antibiotics, and from 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. However, it is expected that soon Swedo will publish a study that says that the antibiotics do make a difference, although I would be surprised if this study supports the use of prophylactic antibiotics.

 

Many doctors believes that PANDAS does exist and when they sees a child with acute onset of tics or OCD, they should get a throat culture (do not rely on the rapid test) and check antistreptolysin O (ASO) and anti-DNase B titers.

 

Elevated ASO and anti-DNase titers in association with exacerbations of tics is suggestive of PANDAS, however, serial anti-DNase B levels are needed to observe "trends" ie. are they increasing ( it's the change in titers that reliably indicates recent infection) vs. decreasing (recovering from an infection). Of note: In Canada the ASO titers can be done but it is difficult to get the anti-DNase B titers done.

 

Nevertheless, when these lab tests are elevated it raises the possibility of recent or current streptococcal, and antibiotics should be prescribed.

 

Neurologists have, in general, been more critical of the PANDAS concept than pediatricians and child psychiatrists. Part of the reason may be that neurologists see more children with tics than with OCD. Typical OCD has a gradual onset and a stable course and is quite resistant to treatment. An acute onset or exacerbation of OCD, as described in kids with PANDAS, is different from the usual OCD course. But the course of PANDAS tics is not all that different from that of ordinary tics. As Roger Kurlan, MD, a neurologist at the University of Rochester School of Medicine, points out, tics have a waxing and waning course and get worse with any sort of stress, including that of illness. That tics worsen in the context of streptococcal infection doesn't necessarily mean that the pathogen has a specific etiologic role.

 

More than likely genetics and the environment may ultimately be found to play a role in disorders such as obsessive-compulsive disorder, Tourette’s syndrome, and PANDAS.

 

As others have described already, antibiotics for sure helped my son tremendously but in the end they were not the magic bullet. We needed to address diet, and vitamin def. as well and help to build his immune system. My son now is not on as many vitamins and we are more free with his diet, however, I still believe strongly in essential fatty acids, probiotics and in our case limiting casein (milk) and there are still times that reducing "screen" time is helpful.

 

In our experience it is most illnesses that will trigger a "PANDAS" episode and I have read that once the immune system is primed to "overreact" it will. I know for us one of my son's biggest setbacks a few years ago was with the chicken pox. Although the focus is mostly on PANDAS and strep you may also want to read about PITANDS.

 

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 ot the TS foundation to help locate an expert in OCD in your area.

Have your child retested if there is a resurgence in OCD symptoms/tics.

 

Treatment focus:

The first line of treatment for PANDAS is antibiotics to cure the strep infection. Sometimes repeated antibiotics may be necessary. Treat all strep infection aggressively with antibiotics.

* Be sure to complete the course of antibiotic treatment to avoid development of resistant strains of bacteria.

* Make use of proven therapies such as cognitive/behavioral therapy and serotonin medication (SSRI's) as are utilized to treat the more usual forms of OCD.

* The "quick" strep throat culture is not accurate enough for demonstrating the presence of streptococcal infection. The older method of incubation of a throat swab on agar for 48 hours is far more accurate.

* In addition to throat cultures, there are blood tests that the pediatrician can request to help identify the association of strep infection and exacerbation of symptoms. These include anti-streptolysin O titer and anti-streptococcal DNase B titer.

 

Let me know if you have any questions, although I don't have much time to post I always read everyone's posts and I try my best. Ronna

[Mos]

Thank you all so so much for your time! I think I am very lucky to have found such dedicated advocates. As you all know we are our children's biggest fans. Your experience has led me in the direction in a quick manner. I would still be researching if I was on my own..so thank you from the bottom of my heart!!! Hopefully I can repay back something I learn along the way.

 

This is so so strange....but we were waiting on our blood results, checking for strep and my son's eye tic is gone????????????????? Anyway we will continue with all of the suggestions....allergy testing is the next on my list. Thanks again. I will keep posting and reading...I am learning this is not going away so I need to be ready for it to strike again! All the best to you and your children.

 

Thanks,

Mos

[kim]

Sunshine/Ronna/Mos

 

I was so glad to read your post. I wanted to mention that the eye problems with one wandering etc. have been discussed on another forum quite a bit. It almost seems to me that the vit A in the cod liver oil, has been reported to help that? If I run across anything more specific, Ill let you know. Someone was going to post the title to a book that was supposed to be awesome about the eye related problems, not vision but muscular and tracking. I'll post it, if I see it.

 

Ronna,

 

That was the first time I had ever read that the tic course was similiar, that it was the OCD that had the acute onset???????

 

 

 

Mos,

 

I know just how you feel, my graitute to the people on this forum runs really deep too.