Is it really PANDAS?

[mybabyo]

After months of doctors and searching, our new immunologist Dr. Rao of Plano said my son's labwork is suggesting PANDAS likely caused by three viruses still in his body that also are showing up on labwork. They are Parvo, HHV6 and CMV. What viruses are these in understandable terms? He did mention HHV6 was the most common causing PANDAS virus which I thought I had read the most common cause of PANDAS is Strep which he test negative for. He is recommending an anti viral to treat the cause and also said we need allergy treatment but he did not elaborate on what that would be. He is recommending Tumeric and NAC for tic/Ocd symptoms. He also wants to run some urine tests to test neurotransmitters to rule out that his tic/ocd condition isn't in part due to issues in the brain.

 

First off, does anyone's case sound like this and if so was treatment successful for you? Secondly, I question how much of this is really PANDAS because my son's tics worsen in social setting and under stress. Could it still be PANDA's and symptoms worsen during these times or is that a sign that the symptoms are being caused from something else. And last, I can't get my son to cooperate with treatment of any kind. He is 16 and he thinks he is making his body do these things and that I'm trying to change him. They don't bother him so he says and he doesn't want us interferring. He will not stop eating the foods that he is showing allergies to and he will not even entertain the thought nor does he believe any of what Dr. Rao is saying and recommending. I have spent thousands of dollars to get to this point and my son will not let me get him treated. I'm frustrated, and deeply hurt and depressed about this so much I feel I need therapy myself. I have two years to help him before he leaves my house. Symptoms did not appear until he was 13.5 and it has taken us this long to get some answers. Can anyone please comment on any of my questions above. I can't tell you what it would mean to me.

[pr40]

you are right, this cannot be pandas bc pandas is caused by strep. perhaps you heard it wrong. PANS is the diagnosis when cause is anything other than strep. veltrex, anti-viral, seems to help some. you can do a search on it.

of course, symptoms would increase under stress. and there is nothing in that fact to contradict the diagnosis of PANS.

I don't get that part of your post where you say that your son is not bothered by his illness and will not comment on it. I hope others chime in.

[EAMom]

Well, it's also possible this is still PANDAS b/c it's hard to know that a strep infection (even undiagnosed) didn't start things at some point, and now other infections are continuing the symptoms.

This is from Swedo's first 50 cases paper:

"Two clinical notes should be made. First, not all

symptom exacerbations were preceded by GABHS infections;

viral infections or other illnesses could also

trigger symptom exacerbations. This is in keeping with

the known models of immune responsivity—primary

responses are specific (e.g., directed against a particular

epitope on the GABHS), while secondary responses

are more generalized. Thus, the lack of evidence for a

preceding strep infection in a particular episode does

not preclude the diagnosis of PANDAS."

http://www.google.com/url?"sa=t&rct=j&q=&esrc=s&source=web&cd=2&ved=0CCkQFjAB&url=http%3A%2F%2Fwww.researchgate.net%2Fpublication%2F13767077_Pediatric_autoimmune_neuropsychiatric_disorders_associated_with_streptococcal_infections_clinical_description_of_the_first_50_cases%2Flinks%2F02e7e52582ed15149f000000&ei=bXRiVIboE4arogSTg4HYCQ&usg=AFQjCNEhOgmkepfTbw2TuFvchhfAnV4y4A&bvm=bv.79400599,d.cGU

Also, sometimes an antibiotic trial is still helpful b/c strep may linger in difficult to culture places (deep in tonsilar tissue, or in sinuses). Also, strep antibodies (ASO, anti-dnase doesn't always rise (or stay elevated) even in the face of culture-able strep.

With both PANDAS, PANS, and Pitands stress can increase symptoms. One theory is that stress (epinephrine) opens up the blood brain barrier.

Is your son "tic only" or does he have other symptoms? Technically, if he is "tic only" then he shouldn't be classified as PANS (not that it really matters).

Here is a thread that you might find useful, the difference between PANDAS and PANS http://latitudes.org/forums/index.php?showtopic=16557

Did Dr. Rao do the Cunningham Test on your son?

I do agree things are tough with teens. Getting them on board with treatment is so important. I would have loved to have my dd14 do a good gluten free trial, but I couldn't get her on board with that. She's also very selective about what supps she'll take. She is good about taking Azith and her anti-histamine.

My dd is doing pretty well now, but has some low grade residual OCD. She won't do any type of ERP as she feels that her symptoms aren't problematic. But, we notice them, and they bother us. Also, they might bother her, but she won't admit it (you know, teenagers).

 

I also wonder if your son could have Lyme. I wonder b/c it's usually the kids with underlying Lyme who have an older onset of symptoms. Just my theory. My dd (who I assume doesn't have Lyme) got better after puberty. Lyme on the other hand, often "comes out" or gets worse with puberty.

Edited November 11, 2014 by eamom

[Mayzoo]

My daughter's first noticeable flare was strep related. Since then, we have been fighting numerous viruses that are the primary cause of her problems (see the list at the bottom of my post). We also see Dr. Rao.

 

Kiddo's viral titers are coming down, and her moods/sleep/behaviours all are improving greatly. We are using Steven Buhner's EBV protocol (http://www.buhnerhealinglyme.com/symptoms/treating-ebv-and-mitochondria-damage/ and http://www.amazon.com/Herbal-Antivirals-Remedies-Resistant-Infections-ebook/dp/B00EEM7WDS/ref=sr_1_2?s=books&ie=UTF8&qid=1415739427&sr=1-2&keywords=steven+buhner) and it has helped reduce all her viral titers. Her Coxsackie titers are now negative and her HHV-6 is half what it was. Kiddo is on several other supps as well. If you have any questions, feel free to ask and I will see if I can help.

 

Tics, both vocal and motor can be triggered by any of the following: stress, fatigue, illness, fever, anxiety, exposure to someone else who is ill etc... It is very possible your son's tic exacerbation is PANDAS/PANS related only worsens or appears under specific conditions.

 

We did the OAT test, the neurotransmitter test, gluten/celiac tests, and a host of blood work the first visit. I feel all the tests were very helpful in piecing together the puzzle that is my child.

 

Maybe if you print out some success stories your 16 year old could start to see that there is hope and light at the end of the tunnel and he would be more willing to try treatment? He may be resistant to treatment due to the enormity of his feelings that it is all hopeless at this point. He may feel it is easier to surrender and accept things as they are than it is to continue to fight with little to no hope of success.

 

He would also see he is not alone and others have these issues. This may make him less likely to say he is the one causing the tics and movements. My child was greatly distressed by her vocal tic, and I used to wonder why it bothered her so much (no social reason, we home school). Then I began to realize how disconcerting it would be if my body started doing anything that I had NO control over. I would almost feel as if I were possessed and someone else was in control. Not a good feeling I can imagine now. Who wants to admit they are not in control of their own bodily actions?

Edited November 11, 2014 by mayzoo

[mybabyo]

Thanks everyone for the valuable information. We have so much to learn. Kind of interesting that his Strep is turning up negative and he had his first bout with Strep every the year all of his tics started. He also had 2 more strep cases the following year. Tics have progressively worsened the last two years. I will ask my doctor more about this. He just seems to thing we need to focus on viral infections. He is negative for Lyme also. His OCD started at age 6 so I suppose it could all be virus related. Mayzoo, I saw that you are doing herbal viral treatment. Did you ever use a prescription anti-viral? I am confused as to what the point of the antivirals are since everything I'm reading says the virus cannot be cured with the anti-viral. Can it actually bring the numbers down and decrease symptoms then even? Eamon, you mentioned that your daughter would not do ERP. I am not sure what that is? All of these terms are new to me I have two other questions if you all don't mind...we did do the Cunningham Test with results of 139 CaM Kinase, 640 Lyso(titer), 1000 Tibulin, 4000 Dopamine D1, and D2 we don't have back yet. Doc said that with these results and the high Igm numbers on the viruses is what is leading him to suggest PANDA's. How reliable is the Cunningham test? After reading on these viruses, it scares me...they all say that really awful stuff can come from them such as encephalitis, schizophrenia, etc. Maybe I should stop reading and just come here.

[BeeRae22]

The information can be overwhelming, hang in there and keep reading!

 

Like pr40 mentioned, pandas is triggered by strep, pans has other triggers. My daughter never had strep that I am aware of, but did have mycoplasma.

 

ERP is Exposure Response Prevention, which is a form of CBT (Cognitive Behavioral Therapy). In a systematic and specific way, a trained therapist works with the patient with exposure therapy for OCD symptoms. CBT/ERP are well researched forms of treatment. However, I'm sure you could find mixed opinions about it's effectiveness all over this board! there hasn't been much research on ERP for Pandas/Pans kids specifically. From my own experience, I believe that most pandas and pans kids need to treat infection first before therapy can be effective. IMHO.

 

If you're working with a doctor that is pandas/pans literate, and it sounds like you are, I would follow his recommendations. It seems to me that antibiotics are typically the first "test run" for treatment, however, if your son is ticcing (I have zero experience with that) than different treatment protocol may be warranted as opposed to patients that don't have tics.

 

Does your son have any other symptoms?

 

I would be willing to guess that your son's condition probably bothers him a great deal. OCD and anxiety are slimy lying bastards that make their victims lie and cover for them regardless of your son's diagnosis, whatever that may be, if he has anxiety and ocd, don't take no for an answer in regard to treatment. He may hate you for it now, but will thank you later I'm sure. Hang in there! This board is excellent. I've learned so much from it, there are so many caring, knowledgeable and supportive parents on here to connect with. Good luck!

[Mayzoo]

We are not using any pharmaceutical antivirals, only herbs. I was also told nothing touches coxsackie. However, on this protocol, her coxsackie numbers went from 1:160 (positive is anything over 1:10) to negative and her HHV-6 went from 10.71 to 4.54 in 5 months. The doc and I believe, based on her behaviours, that her EBV is going down as well, but it was so high, it has not begun to register as going lower yet, The way they measure EBV is over 22 is positive but the scale goes to 600. Kiddos was >600, so if it was in fact 2000, it will take a while to show on the blood work, since it has to get below 600 to start showing it is going down.

 

I am not certain you can "cure" a virus. I believe they remain dormant in your body after exposure. However, the goal is to treat until the behaviours and/or titers indicate that the virus is no longer causing symptoms--which means the immune system is keeping it in check. In my kiddos case, she has been a couch potato for 18 months with crushing fatigue. Within the last 6-7 weeks she has become more active, moving about the house and in the last 2-3 weeks she has begun to regularly ask to go outside to help us work, play or just walk around.

 

We tested her immune system and she is IGG deficient. We also tested her titers to vaccines she received a decade ago. All her vaccine titers were insanely high, indicating a messed up immune system.

 

My goal is to get the viruses under control, so her overall body inflammation can reduce, and this will allow her immune system to recover at least some on its own. I suspect we will be on this herbal protocol for up to another year, then continue on immune modulating herbs for years after that. My hopes is that she can heal and have a properly functioning immune system.

Edited November 12, 2014 by mayzoo

[mybabyo]

Hi everyone, I have small updates which leads me to more questions?? You all have helped me so much. So, back in November, Dr. Rao started treating my son for tics/ocd possibly caused by high virus titers cocsackie(1:1600), Parvovirus (6.6), CMV (6.0), HHV6 (7.0). He did confuse me a little when he said initially that these numbers were not necessarily high enough be be characterized as PANS. Is that true..were yours higher?? Yet the lab reports put them in the high category. He then did the Cunningham Panel and his levels came back DRD1(4000), DRD2L(couldn't get due to shortage at lab), LYSO(640), and CamK(139). He confused me further because at one visit he told me these number were suggestive of PANS probably caused by the above viruses, the next visit a week later I had my son and husband with me and I wanted Rao to repeat his findings, he told us that the Cunningham Panel numbers were not neccessarily suggestive of PANS but that he was going to go ahead and treat him for it and see what happens. What?? Can any of you shed some light on this, perhaps these numbers mean something to you that you can explain and help me understand because he has me confused.

 

He went ahead an put my son on Acyclovir anti viral. We have been on for 2 months. We had new labs done last week and I had them fax me a copy. They did not test Coxsackie again for some reason but Parvo went down to 4.8, CMV went to 5.8 and HHV6 for some reason could not be completed at the lab. How fast can I expect numbers to go down on antivirals.

My son's IGG went from 609 to 380 during this time. I know that measures his ability to fight infection but not real sure exactly what this means for his immune system? He also did a new test on him which was the Candida Albicans. He tested really high at 18.9. I am assuming these means a yeast problem but what does that have to to with PANS and his tic/ocd system exactly? And last, we are waiting on more test to come in which are mitogens I think(tetanus toxoid AG response, pokeweed mitogen response, phytohemagglutinin PHA mitogen, and candida albicans Ag response. Can anyone tell me what these are and what they tell us? I am considering doing the MTHFR only because I have heard it mentioned here. What exactly do the mutations found tell me. I'm not sure I understand the test but hear once I know how to interpret it can be very helpful to recovery.

 

My son is 30-40% better depending on the day. Initially he was about 80% better but some symptoms have come back. He is also on NAC and Tumeric for tic control. I'm not sure if the improvement is due to lower virus titers or the NAC/Tumeric.

 

Sorry for all the questions, once I get educated I hope I can give back to this board and all of you as much as you are helping me