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swarmie

hand/foot/mouth coxsackievirus

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I am a parent of a seven-year-old daughter who was diagnosed with PITANDS in 2010. Dr. T. was her doctor. Well, now my friend's eight-year-old son recently showed a sudden SEVERE onset of OCD. Dr. T. recently ran a series of blood tests in an attempt to rule out PITANDS/PANDAS. Unfortunately, Dr. T. could find no infections in her ds's body; however, my friend's ds did show that he had the hand/foot/mouth coxsackievirus.

 

Dr. T. recommended as the first course of action to rule out strep even though his bloodwork did not indicate his body had this infection. (I understand that MANY kiddos with PANDAS have had strep without any markers to indicate such an infection.) Unfortunately in this case, the antibiotic prescribed by Dr. T. has proven ineffective in decreasing the OCD behaviors. As the next step, Dr. T. mentioned prescribing another drug to rule out hand/foot/mouth coxsackievirus as a potential link to the OCD behaviors.

 

Has anyone on this forum had a child that was diagnosed with PITANDS with the hand/foot/mouth coxsackievirus as the primary/only link to PITANDS? That is, no infections or other viruses were found in the body except this hand/foot/mouth coxsackievirus?

 

My friend wants to know if this virus has a history of causing PITANDS itself.

 

In addition to paying for the bloodwork and the antibiotics out-of-pocket, my friend says Dr. T. is charging her $300 per phone conversation with him, which creates a financial hardship to this family.

 

She wants to be sure there is a viable link between hand/foot/mouth coxsackievirus and PITANDS before pursuing further tx. with Dr. T.

 

FYI, there is a history of OCD in this family, if this helps?

 

Any advice/experiences shared would be greatly appreciated. Thank you.

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We also spoke to Dr. T recently and he mentioned that coxsackie is a trigger for PANS. He also talked about it briefly on his recent PPN call in blog. So, I know HE believes that it is, but not sure if anyone else does. I hope you get replies from other experienced parents!!

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My daughter has been displaying PANDAS/PANS behavior since July 8 and was diagnosed with coxsackie virus the week following onset. Her initial bloodwork drawn August 8 shows no bacterial infections (strep, microplasma, lyme, etc. all normal). We talked to Dr. T about a little over a week ago and he said that he sees coxsackie as a trigger often. (interestingly, my daughter has NO history of diagnosed strep, but several cases of coxsackie -- always with sores only in her mouth). He also suggested that my dd might be a low strep responder so there certainly could be strep there somewhere that we're not seeing.

 

A nutritionist we work with had told me that coxsackie is an "opportunistic virus" so often if you are getting it, something else is going on that is underlying.

 

Dr. T has asked for additional tests including coxsackie and some other viruses (the original blood work did not include a viral panel), but we haven't gotten them yet. We are seeing Dr. L. this coming wednesday and are waiting to draw blood until we meet with her so that if she has any additional bloodwork to request we don't have to do another blood draw on top of the one requested by Dr. T. I will be asking Dr. L about the coxsackie trigger and will post what I learn there.

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Thank you all for your responses. Hayley, we are eager to hear what Dr. L. has to say about the coxsackie virus acting as a trigger to PANDAS. I will pray for your daughter... I'll pray for all the families on this board who are effected by PANDAS/PITANDS.

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Why couldn't coxsackie cause PANS? If you read Swedo's paper on www.pandasnetwork.org you will see that it is now believed that any infectious trigger can cause PANS.

 

My son made huge gains when we started Valtrex almost one year ago. We call it the magic blue pill. He has been on it continuously since Oct 2011. I had no idea he had a high viral load, as he never presented as a physically ill child - mostly psychiatric symptoms with fatigue.

 

You should ask Dr. T about using Valtrex. Antibiotics will not reduce a viral load.

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Dr T has spoken to us about coxsacie as well. We are considering trying Acyclovir (zovirax) similair to Valtrex. I have heard a few say they have had good results with this.

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Hi - In our experience, anything that can trigger an immune response, can trigger symptoms. For our dd9, an acute allergic reaction to a food that she had a known allergy to (treenuts) caused a flare when she unknowlingly ate some at school one time.

 

Not sure if this is the case but some years back, I spoke to Dr James Leckman from Yale about PANDAS and he said in kids that react to more than just strep that once strep causes the body to produce the cross-reactive autoantibodies that any subsequent immune provocation can cause the B cells to pump out all the same antibodies again, including the autoantibodies. So as they say 'strep loads the gun but any infetion can pull the trigger'.

 

Dr T, however, doesn't believe it's antibodies doing the damage but that instead it's an aberrant or in his words, an alternate fever response. Something to do with prostaglandins/cytokines and not the basal ganglia but some part of the hypothalamus that talks to many parts of the brain and thus you can have such a diverse constellation of symptoms and why inbuprofen can work so well. ( I probably murdered Dr T's theory but you can hear him explain it on the blog talk radio session that has already been posted).

 

For us, we stopped all abx unless we get a fairly certain bacterial trigger 'cos my kids seem to react to virtually anything and prophylactic abx didn't make much, if any, difference with numbers of flares. We finally had to let go of chasing the trigger and look at supporting their systems and underlying issues that might be contributing such as methylation.

Edited by dut

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Yes, I knew that kids with pre-existing PANDAS or PITANDS could exhibit OCD behaviors (or any behavior related to the dx.) with the onset of any viral or bacterial infection. However, based upon what I've read in the past, I was under the impression that PANDAS/PITANDS could only form initially by a bacterial infection and not a viral infection(?). Not that it isn't out there...but I couldn't find any research online (besides Dr. T.'s radio podcast) to support this theory that viral infections literally caused PITANDS/PANDAS, so I was wondering if Dr. T. was formulating his own hypothesis about the hand/foot/mouth virus based upon his own clinical experiences?

 

My friend has decided to treat the hand/foot/mouth infection...to see if such tx. will alleviate the OCD behaviors her son has been exhibiting the past several weeks. I think she is making a wise decision.

 

She does not believe her son has ever had STREP or any other bacterial infection in the recent past that would have elicited PANDAS/PITANDS. However, there does seem to be evidence that my friend's son could have had a bacterial infection in years past that elicited PITANDSish-like behaviors (ADHD).

 

I am very curious to learn if the drug Dr. T. prescribes to eliminate the cocksaxievirus does in turn control the OCD behaviors.

 

BTW, thank you for explaining what Dr. T. theorizes goes on inside the body as the PANDAS/PITANDS behaviors are in full swing. I had read about the antibodies/basal ganglia theory and not about the prostaglandins/cytokines theory...very interesting! I am so glad we have Dr. T's expertise to depend upon.

 

As an added note, I'd like to say that I am grateful beyond words to Dr. T. for his expertise and his care for my daughter. Without Dr. T., I don't think my daughter would be what she is today. Dr. T. truly is a godsend!

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We have been dealing with Coxsackies Virus (3 different strains) for 2 years now and have a recent outbreak already in older DS class. All three of our children have gestational Lyme et al. Older DS was originally diagnosed with PANDAS in August of 2009. Younger DS has heart related issues and is probably from the combination of Coxsackies and Lyme. It is common to find Coxsackies as co-infection to Lyme and in ASD children.

 

We have been treating continually for 2 years with different anti-virals. Treatment has definitely helped but titers remain stubbornly high and treating with anti-virals wasn't the complete answer either. I do understand that Dr. T has been finding a lot Coxsackies recently and I applaud him for testing. However, I would be shocked if Coxsackies is a stand alone issue. Do I think it could be a possible trigger for PANS, ABSOLUTELY!! If I had positive Coxsackies and a PANS child and anti-virals are helpful but not the complete answer I would continue to dig further for other chronic issues. We did experience a worsening of symptoms when initially treating with anti-virals and when they have been rotated. The worse before better is often referred to as a herxheimers response and mostly associated with bacterial infection but we also experienced with anti-virals. Our experience was the worsening of symptoms could last for weeks.

 

I think if you continue to look further in the Lyme World or ASD World you'll find much, much more on the research and discussion of Coxsackies.

Edited by SF Mom

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My friend's ds has been diagnosed with mitochondrial disease as his primary disease with mild autism as a secondary disorder. MD does have a significant impact on the immune system, I know. Hmm. I know it's a shot in the dark, but I wonder if perhaps MD + the mild autism + the coxsackievirus could have enough to trigger the onset of PANS?? Or maybe it's just that MD (and even mild autism) only impacts the integrity of the immune system, thereby making one more susceptable to catching infections that lead to PANS? I believe my friend commented that Dr. T. stated to her that kids with MD are much more susceptable to PANS than other children who don't have this disease.

 

Ugh! I sure wish it was easier than this to obtain definitive answers!

 

Thank you, btw, for sharing your thoughts, as well as your experiences with treating the coxsackievirus. Very enlightening.

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What tests are these docs using to confirm pos coxsackies? IgM - fine I get that.

 

BUT- If only IgG then from what I have read the ELISA test can't tell you much - and KIDS IgG should be high for IgG. 80% of the population has had it and has an IgG titer.Which takes al long time to go down YEARS- and since you normal get this as a kid, theirs are higher (I don't know how high - I'v e been looking for an age chart for this and for HHV6 - because again - it should be positive as most people have had it), but how high is too high s the question. I've read that an adult HHV 6 is questionable for chronic fatique dx if above 5.0. But what should a child's be since they had is much more recently? Does anyone have these charts?

 

Here is what I read on the Focus testing site.

I think as noted below - the first test is only a base line, and if its high - you should retest in a few weeks to see if it has changed dramatically. Four fold change is what they are looking for.

_________________________________________________

Coxsackie A Antibodies (Serum)

 

Panel currently includes testing against A-2, 4, 7, 9, 10 and 16 antigens. Although there is crossreactivity among the enteroviruses by CF, most healthy people do not have titers >=1:8. Therefore, detectable titers, especially those >=1:32, should be considered a positive identification. Confirmation is made by demonstration of a four-fold change in titers between acute and convalescent sera. See Unit Code 4401 for parallel testing.

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Norcal Mom: Here are our older DS Coxsackies results. I do not have younger DS's in front of me. He is the one with heart related issues and LLMD said at time WOW, his titers are really high but I do not remember count. The following results are from last Feb/March.

 

Results are from Lab Corp., blood drawn after treating with anti-virals for almost 1 1/2 year and listed as IgG/IgM Antibody. Negative is considered Neg: <1:100 My understanding is you will never fully eradicate these viruses. You can lower load and render it non problematic 'hopefully'.

 

Coxsackies A7: 1:800 "HIGH"

 

Coxsackies A9: 1:400 "HIGH"

 

Coxsackies A16: 1:800 "HIGH"

 

Coxsackies A24: 1:200 "HIGH"

 

Swarmie: Our younger boy/girl twins were given tentative diagnoses of ASD at 2 1/2, also have low IgG 1s and IgG 3s, mineral deficiencies and mitochondrial damage, etc. They are now 5. It took us a very long time to fully understand all their issues but in a nut shell we were dealing with a bunch of stuff, not just one issue. One had language regression, sensory issues, high anxiety, low weight and muscle tone, etc. The other was extremely smart with photographic memory but also suffered from OCD, rage behavior, sensory issues and had aneurysm's 'no sudden on-set'. The older son suffered from 'sudden on-set' of PANS after strep related illness. My children are not biologically related to each other but all were carried by me in-utero. They all have similar infections and viruses to me. Sometimes when you are dealing with ASD, it is important to test the mother to see how the child is infected. When a child gets infected while in-utero they often are weak antibody responders because the body does not recognize bacteria as foreign.

 

You might recommend to your friend she see an LLMD that also understands ASD from infectious position as they have some good tricks to figuring the depth of chronic infection and understand tests that don't specifically look at antibodies.

Edited by SF Mom

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I spoke with my friend tonight and she said it is believed that her son had the coxsackievirus in the past. In other words, I misunderstood and thought her son's bloodwork showed an active case of it. Not so. She also says that her son must have been sick multiple times after he contracted the coxsackievirus, whenever that was.

 

Is it normal for someone with PANS that has gone untreated to show no PANS-related behaviors while exposed to various infections until one day...while sick with another nasty cold you all of a sudden have severe OCD?

 

I think my friend is having doubts whether or not it would be worthwhile to pursue tx. with Dr. T. She is struggling to see how the coxsackievirus that her ds once had (and that most people contract regardless of PANS) actually caused the sudden OCD behaviors. (Unfortunatley, I think another reason why she is hesitating to try an anteviral drug is that Dr. T. isn't returning any of her emails or phone messages:(.)

 

Have any of you faced challenges in communicating with Dr. T by email/phone?

 

So what do you think? Do you think it is still worthwhile to treat for coxsackievirus even though it appears to be an infection of the past? Perhaps my friend and/or I simply do not know enough about the coxsackievirus to know what is best for this ds.

 

Another question. My friend's son is exhibiting severe OCD behaviors approx. half the time. In other words, his OCD behaviors operate like a see-saw. One day there are little to no behaviors, the next it is very, very bad. Is this normal? My daughter, who had severe OCD (plus some) while actively infected with microplasma, did not exhibit this yo-yo type of behavior. (Without tx. her behaviors were everyday awful.)

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If she tries anti-virals, symptoms improve and titers drop.... it would give her some confidence that it is an issue. In my opinion, it would need to be at least a six month trail treatment course. You need to think of viruses as the overall load and not as past infection. You will always carry the virus and may always have some type of titers. I am more curious as to how high her son's titers are and if he has more than one strain similar to my kids that have high titers and several strains. We did not show physical signs of Coxsackies (maybe heart related issues in one child) until treated with specific anti-virals then had mouth sores (all children) and coxsackies sores appear on one child's rear end as a response to treatment. There are herbal formula's specifically for Coxsackies and we've used this under the guidance of our Dr.'s. Again, a good integrative LLMD or Dr. who treats Autism biomedically would have an understanding of how to treat these types of viruses and explain results to her much better.

 

V-C By Bryon White: http://byronwhiteformulas.com/

 

Edit: In regards to your question about amount of "OCD"... I'd read more on Dr. Ts theory on alternative fever response.

Edited by SF Mom

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