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positive blood test for PANDAS


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Hi,

 

My 8 year old son was diagnosed with Tourette's syndrome last October. Since then, we've gone through a rollercoaster of trials and tribulations. I just posted something on the TS forum and thought I'd copy it here. I'd love the advice from all of the PANDAS' experts.

 

Here's the post:

 

Hi everyone,

 

Now that school has started it's been difficult for me to visit the site. Of course, I seem to be pulled toward it when my son's tics start escalating. In the summer, with the help of the many informative and supportive souls on this site (thank you!), I decided to try a new multi. We started using the new Kirkman multi. I thought I'd write about my observations. But, please stay tuned...I have another important question regarding PANDAS. Please bare with me. Here goes...

 

My 8 year old son's tics have been getting progressively worse. By the beginning of this summer, my son was doing head turns, eye rolls, lip-popping and smacking (with spit), throat clearing, and intense blinking. I'm pretty sure there were more tics that I have forgotten. In November, we stopped homeopathy because we thought his tics got worse. They were actually intensely scary at the time. We were also doing cranial therapy, which we've stopped during the last few months. In mid-July, his tics were very bad. We started acupuncture and Kirkman supplements at around the same time. We continued to use Natural Calm at night. So, to summarize, we now only use Kirkman, Natural Calm and occasional acupuncture. Oh, this week he is also getting the HERBST appliance. Ugh.

 

Within two weeks of taking the multi, his tics seemed to be getting better. His lip popping was less noticeable. He just had some pretty bad blinking. By the end of summer, his tics seemed to be only noticeable to us. Our friends barely noticed a thing and commented on how he seemed to improve. He did, however, have some intense separation axiety. He would cry when I would go out at night with friends or would worry every time I left the house. All in all, I felt like for about two months, I could start breathing again. Could it be a coincidence that the new multi helped reduce his tics?

 

I wanted to wait to post anything until school started so I could see if stress would bring on more tics. It's been about 3 weeks of school. This weekend, his tics seem a little worse. I'm hearing more lip smacking, seeing some head turns, he still does eye rolls. He's getting a bit annoyed with the whole thing.

 

One question I have is what do I do next? Should I be supplementing with something else? I noticed a post from Chris mentioning GS (not sure what that is). Is that something I should give him, too? What are my next steps?

 

Okay, here's the big question (or concern). The pediatrician just called and said that my son's blood work tested positive for antibodies and elevated anti-stretolycine O (please forgive the spelling) She said something about the antibody for Anti-DNASE B. I'm sure I'm butchering all the spellings. What is all this? Does this mean he has PANDAS? If so, are all of the things I've been doing worthless?? If he has PANDAS, would anything I do even help him? What's the difference between TS and PANDAS? Is PANDAS more treatable? With antibiotics?

 

I really apologize for all of the questions. This just threw me for a loop. I don't know what to do now.

 

I appreciate any help and advice I can get. Thank you.

 

Nola

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The ASO and Anti Dnase just mean that your son has made antibodies to toxins that are excreted by strepA. Has he had a positive rapid or culture for strep recently? Some kids are completely asymptomatic w/ strep, so you may not have known when he had it. If your supplements have improved your son's health or condition then they certainly are not worthless. Many people on this board treat PANDAS with supplements and/or prescription meds.

 

PANDAS is an auto-immune disorder, triggered by strep. There is not a diagnostic test for PANDAS. The diagnosis is usually made when a temporal association is established between strep infections and symptoms (OCD/tics, et al.), and the symptoms improve with the use of abx and anti-inflamatories.

 

There are, however, other things and other infections that can cause tics. Just my opinion, but I believe TS is just a neurological manifestation of an underlying condition- be it infection, injury, or other environmental triggers. If you can identify the underlying cause, (maybe PANDAS), it can help you treat more effectively.

 

There is some very good info on the "helpful Threads" thread pinned at the top of the forum. Might I suggest, for starters:

http://www.latitudes.org/forums/index.php?showtopic=3756&st=0#entry29305

 

http://www.latitudes.org/forums/index.php?showtopic=6265

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The ASO and Anti Dnase just mean that your son has made antibodies to toxins that are excreted by strepA. Has he had a positive rapid or culture for strep recently? Some kids are completely asymptomatic w/ strep, so you may not have known when he had it. If your supplements have improved your son's health or condition then they certainly are not worthless. Many people on this board treat PANDAS with supplements and/or prescription meds.

 

PANDAS is an auto-immune disorder, triggered by strep. There is not a diagnostic test for PANDAS. The diagnosis is usually made when a temporal association is established between strep infections and symptoms (OCD/tics, et al.), and the symptoms improve with the use of abx and anti-inflamatories.

 

There are, however, other things and other infections that can cause tics. Just my opinion, but I believe TS is just a neurological manifestation of an underlying condition- be it infection, injury, or other environmental triggers. If you can identify the underlying cause, (maybe PANDAS), it can help you treat more effectively.

 

There is some very good info on the "helpful Threads" thread pinned at the top of the forum. Might I suggest, for starters:

http://www.latitudes.org/forums/index.php?showtopic=3756&st=0#entry29305

 

http://www.latitudes.org/forums/index.php?showtopic=6265

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There are, however, other things and other infections that can cause tics. Just my opinion, but I believe TS is just a neurological manifestation of an underlying condition- be it infection, injury, or other environmental triggers. If you can identify the underlying cause, (maybe PANDAS), it can help you treat more effectively.

 

I really disagree with this statement. There are some people who have a serotonin or dopamine transport gene "knocked out." and people do really just have a chemical imbalance in their brain. In that case natural supplements which increase those specific neurotransmitters can help. TS is a really rare condition- TICS on the other hand can be caused by a slew of different things.

My apologies if I have disseminated disinformation. I only meant to point out that if she can find an underlying cause for her child's tics it may help with treatment, and that PANDAS is only one possibility among many.

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If the strep antibodies are high it would be worth a try to give a month long trial of antibiotics to see if you get any improvement in symptoms. Strep may be present in different areas of the body, not just the throat. So even if you get a negative throat culture, the high strep titers still implicate a strep infection somewhere. I would personally find PANDAS docotor to get a professional opinion. If your son has seperation anxiety and tics, both of which are symptoms of PANDAS, along with elevated strep titers, this is a big red flag. He needs to be evaluated by a PANDAS specialist. I would not hesitate to find one closest to you (you may very well have to travel), and call for an appointment right away. Best of luck.....

 

Dedee

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  • 3 weeks later...

Thank you so much for the replies. In truth, I've been scared to read the posts. I thought I was starting to get a handle on the TS diagnosis and now I'm not sure what I'm dealing with. I don't know where to begin. As confusing as TS was to figure out, I think PANDAS has me stumped. We were referred to a psychiatrist who specializes in PANDAS but our referral was denied. What do I do now?

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Nola we are just starting our PANDAS journey. The pediatric neurologist we have seen likes boxes like Tourettes ADHD OCD and ODD (not all for my son thankfully...) Currentlly the neurologist is looking at a tourettes diagnosis ... but of course tics started suddenly in may so we don't have a year of occurrence yet. We have tried a psychologist, GPs, ENT, Paediatrician etc. We finally have found a BioMed doctor who has heard of PANDAS and is treating. We are only on day 14 so we truly are at the beginning of this. I wanted to exhaust all the '-ists and believe I have. Here in Queensland Australia it seems ro be a rarely acknowledged conditions. I have received a huge amount of help from Diana at pandas network.org. She has emailed and answered many questions from me as I was struggling to find an answer for my son. 14 days on antibiotics has been incredible. Mood has changed, focus and resilience has improved. [not so much the tics ... I believe they will be the last thing we see improved.] Good luck on your journey, and if you have questions the people here really know their stuff and are very generous sharing and supporting people. (pandas network.org - Diana is also a gr8 resource) :)

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I am sorry the appointment was denied. You may have to find another physician that specializes and possibly pay out of pocket. That is what many have had to do. If you use regular doctors you will most likely get conflicting opinions from one to another. I would suggest you read some of the articles on PANDAS that you will find on this forum. Most of them should give you an idea if you think your son fits into this category in some way. You will save money in the long run by moving straight to a PANDAS specialist for a diagnosis one way or another. In my opinion you really can't trust anyone else to say this isn't PANDAS. I think you have plenty of reasons to be suspicious with elevated strep titers, anxiety and tics. My personal opinion is that's the most likely scenario. But that is only my opinion and I am living with three PANDAS / PITANDS kids right now so maybe my vision is skewed. Also, starting antibiotics is key. If you see an improvement in symptoms with antibiotics that is a big indicator. Antibiotics should be started as soon as possible.

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