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Identical Twins - Only one with Pandas


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Hi Everyone,

I am new here, although not new to PANDAS. We have identical twin sons, now 15, almost 16. Tall, healthy, athletic happy kids....except for what appears to be a new episode of PANDAS, 4 years after the major ###### you are all familiar with struck one child at age 11. Brief history: both kids always had minor tics as small children, although one, DS in question, a little worse. Lots of ear and sinus infections. Brief weird period around age 5/6 of what I now think was a PANDAS episode - repeated verbal and movement tics/OCD. Went away when I quit work to be with them, so I thought it was some sort of separation anxiety problem (yes, working mom guilt trip), but was probably resolved with antibiotics for other stuff. Both boys diagnosed with ADD around second grade.

 

Fast forward to age 11, major episode of tics/verbal repetition/OCD rituals that increased in severity over four or five months, during which we were told it was TS/OCD. Kept looking for right answer because identical twin was showing nothing. Finally found PANDAS and got positive strep/rising titers tests for otherwise asymptomatic DS. Treated with penicillin for 21 days, and virtually all symptoms disappeared except for minor eye blinking and rolling that has continued since then. We have just assumed that he would always have these. I am now having major guilt and worry that I have not kept up on the understanding and information about PANDAS since then, as now I wonder if maybe we didn't really kill the infection or something - could his minor symptoms still be PANDAS? He was not put on a prophylactic course or any other antibiotic. Pediatrician knew nothing- just did what we asked. Over the years we have had his titers checked and cultures taken anytime we think he has been exposed to strep, but no positives. Titers generally around 150, which doctor always says in normal range. Reading Buster's info on ASO titer UPLs, I'm not really sure about this.

 

Fast forward again - two weeks ago. Now DS starts with more severe eye rolling, head turning. Begins to tell us that he can't control certain thoughts - has to repeat thoughts in his head before kicking soccer ball, answering a question in class, etc. Alarm bells going off in my head of course. The problem is that a month ago we started him on a stimulant medication to help with the ADD and high school demands. He has been off ever since the first PANDAS episode. We took him in for a titer test - again 156. Symptoms worsening over the last two weeks, but not as severe as the first episode four years ago.. Stopped the stimulant last week. DS is worried - what if this is just me, Mom, and not PANDAS? Breaks my heart. So, took him back again yesterday. Rapid test negative, waiting on long and ASO levels. DS was possibly exposed to strep over Christmas as my sister had it over the holidays and was around us quite a bit, although she tried to "stay away" from DS.

 

Meanwhile I started researching again, and found this forum and the pandasnetwork.org. Wow - so much more info now than a few years ago. But here are my questions for anyone who might have thoughts: 1) I understand that is it is possible if not likely that the stimulant exacerbated underlying tics. But does it sound like more to it, ie PANDAS problems given the severity of OCD issues and the exposure to strep a month ago? 2) Is it OK to start a Prednisone pack immediately/before antibiotic to help relieve symptoms? 2) If the strep culture adn/or titer tests are negative (not rising), should we insist on a course of antibiotics anyway? i.e. what's the harm? 3) We have no real baseline for "normal" titer levels other than the above. It doesn't seem that 156 is high, but how do you know what is high for your kid? Would an identical twin's brother's levels prove anything ? That child has never had a PANDAS episode. We do plan to have him tested for strep and ourselves, just to be sure it's not in the house.

 

Any thoughts or suggestions would be appreciated. Bless you all who have much worse cases with your children - it is wonderful to see so much support and information out there.

Thank you, HT's Mom.

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Hello and welcome to the forum:

 

I would advise to check for multiple infections because many families have found underlying infections as a cause to their children's OCD/TIC issues. Perhaps you can check both boys, although only one child is showing PANDAS symptoms, in order to better assess the whole situation.

 

So, of course, I would check both boys of the ASO/Anti-Dnase . On top of that I would include the following:

 

Mycoplasma (both IGG and IGM levels). There have been research articles stating the repeated mycoplasma infections may not create a rise in the IGM levels.

Lyme Disease along with coinfections via IGENEX or Neuroscience since these labs include more relevant bands

C3D circulating immune complex because elevated levels could create false negative infection titers.

 

A really good ILADS LLMD (lyme literate doctor) can help you check and treat all infections, not just lyme.

 

I hope this helps.

 

Elizabeth

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[Thank you for responding, elizabeth. However, I have no familiarity with any of what you have referenced. I think Mycoplasma is walking pneumonia? And why Lyme disease? And what is the C3D circulating immune complex? Lastly, we have only ever had the ASO test - until reading this forum the Anti-Dnase was not something I was familiar with nor has any doctor mentioned it.

Thanks.

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This seems like pandas to me. I would put him on an antibiotic. My son's pandas doctor is a neurologist in Maryland. You can pm me for the name. Today it is recommended that a child with pandas stays on an antibiotic until he/she reaches their mid twenties.

 

Steroids can help greatly too.

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1) I understand that is it is possible if not likely that the stimulant exacerbated underlying tics. But does it sound like more to it, ie PANDAS problems given the severity of OCD issues and the exposure to strep a month ago?

I'd google the medication and see if it has any immune system properties. Many medications, especially those that affect neurotransmission, have an immune effect- like suppressing the immune system.

 

2) If the strep culture adn/or titer tests are negative (not rising), should we insist on a course of antibiotics anyway? i.e. what's the harm?

The titers may or may not rise with a strep infection. Many, many PANDAS kids never have elevated titers at all and it is a misunderstanding (by many doctors even) that no elevated titers=no strep. My daughter, for instance, had numerous positive strep swabs, but never a rise in titers. But, yes, I would try to get 30 days of either zithromax or full dose augmentin and see if it helps. That's certainly safer than psych meds.

3) We have no real baseline for "normal" titer levels other than the above. It doesn't seem that 156 is high, but how do you know what is high for your kid? Would an identical twin's brother's levels prove anything ? That child has never had a PANDAS episode. We do plan to have him tested for strep and ourselves, just to be sure it's not in the house.

My concern would be that his twin is a strep carrier and is exposing your PANDAS kid continually. PANDAS kids do not need an actual infection to trigger symptoms. Exposure is enough to stimulate the immune system to produce antibodies. In PANDAS kids its those antibodies that cause the problem, not the infection or the bacteria itself.

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HT's mom,

 

There are two main strep titer blood tests, ASO and Antidnase b, and they rise over time at at different times. So more than one blood test about 3 weeks apart would be advisable, for both your boys.

 

I started researching PANDAS in 07 and found this forum then, and, yes, things have changed haven't they? There are pinned threads at the top you can read through and print. Also, there is a book out called Saving Sammy that you should buy and read about a mom who found help for her son.

 

There are many ways you can approach your situation, and you will get many opinions here. It seems you have a doctor willing to run tests and rx antibiotics. I would suggest getting throat cultures on both your boys, if not your whole family, and get the blood tests for your boys. My dd very surprisingly tested positive for mycoplasma pneumonia after years of doing well and low level stuff like your boys but had an onset of a very bad motor tic, no other symptoms. I would ask for that blood test for both of them as well, IGA and IGM, and yes many on here are finding the complication of being also positive for lyme, you could as your doctor for lyme western blot blood test to start with. Many on here believe in Igenex lab for more thorough results.

 

My next thought is ask your doctor for augmentin at least for the son suffering more right now. It is clinically better for strep. Ask for a long dose, like 20 to 30 days. You can still get all the blood tests while on the antibiotics.

 

With all that said, I have recently chosen to try the alternative route for a while, trying to avoid antibiotics, steroids and IVIG for 10 more years. I am not sure where it will take us, but I am going to give it a try. With that said, I am keeping my dd on antibiotics while doing it, at least for a while. If we see positive results, I will take her off them.

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[Thank you for the advice, momlove, peglem and others. I have actually, coincidentally read Saving Sammy, about six months ago, thinking, naively, wow, I'm so glad that we are past that terrible time. Also, I happen to have a friend who is a pediatric infectious disease md, so I have emailed her and will schedule all of the tests that have been mentioned, for both boys. I am waiting on a call from pediatrician to get augmentin prescribed, and will ask for other tests for all of us.

 

One more little tidbit I just thought of after coming across a couple posts about children having new episodes following root canals or other dental work - Both boys had their wisdom teeth out just before Christmas. The non-pandas kid was put on an antibiotic because his teeth had hardened due to prophylactic tetracycline abx for acne, ,but not my DS with pandas issues. Does this seem like another clue to our current situation?

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You might also email Dr Cunningham at University of OAklahoma. She does research on blood makers they believe are involved in pandas. I think she might be interested in a case of identical twins - where one has pandas and one doesn't. Maybe she'll run some free tests for your boys. Kathy-Alvarez@ouhsc.edu and

Madeleine-cunningham@ouhsc.edu

 

I wouldn't hold my breath on a positive ASO titer or culture - probably half the people on this board never had either. We found our our son had high mycoplasma titers. We are current testing for other co-infections. Never found any strep - but doesn't mean it didn't start this whole thing in the first place. Most kids that have had it for a long time (anyone over the age of 7 basically) tend to react to more than strep - PITANDS - pediatric infection triggered autoimmune neuro-psychological disorder syndrome - although most people know the term pandas, and often times they are used interchangeably . I would highly recommend getting in touch with one of the pandas specialists referenced on the board while you kids are still able to see them - most are pediatricians, and I think it gets even harder to find help for adults.

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One more little tidbit I just thought of after coming across a couple posts about children having new episodes following root canals or other dental work - Both boys had their wisdom teeth out just before Christmas. The non-pandas kid was put on an antibiotic because his teeth had hardened due to prophylactic tetracycline abx for acne, ,but not my DS with pandas issues. Does this seem like another clue to our current situation?

 

Could be. My PANDAS child almost always has a flare w/ dental work.

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Hi HT's mom,

 

I just skimmed your posts/replies here are my thoughts...

 

1) I wonder if your "non-pandas" son is actually PANDAS as well (but very mild) with the tics/add.

 

2) One more little tidbit I just thought of after coming across a couple posts about children having new episodes following root canals or other dental work - Both boys had their wisdom teeth out just before Christmas. The non-pandas kid was put on an antibiotic because his teeth had hardened due to prophylactic tetracycline abx for acne, ,but not my DS with pandas issues. Does this seem like another clue to our current situation?

Oh yeah! My dd's PANDAS (in 2008/age 7, before we ever heard of PANDAS) became "full-blown" after extractions (for orthodontic reasons). In hindsight she was strep positive (throat cultured when she was in the hosp. for acute food refusal/anorexia from PANDAS). We believe that with the tooth extraction, strep in the mouth got released into the blood stream (also stress of extraction can open the blood brain barrier). Have you done current throat cultures on all family members? I would do that. I wonder if your non-PANDAS son's tetracycline helped him from becoming full-blown PANDAS (over the time-period he was on tetracycline) as well. And, being on abs for the extraction likely was a big help as well.

 

I am certainly interested to see how your 2 son's labwork turn out. BTW, antibiotic use can lower strep titers, so keep that in mind when you look at your non-pandas son's titers.

 

PS. Where do you live?

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Hi HT's mom,

 

I just skimmed your posts/replies here are my thoughts...

 

1) I wonder if your "non-pandas" son is actually PANDAS as well (but very mild) with the tics/add.

 

2) One more little tidbit I just thought of after coming across a couple posts about children having new episodes following root canals or other dental work - Both boys had their wisdom teeth out just before Christmas. The non-pandas kid was put on an antibiotic because his teeth had hardened due to prophylactic tetracycline abx for acne, ,but not my DS with pandas issues. Does this seem like another clue to our current situation?

Oh yeah! My dd's PANDAS (in 2008/age 7, before we ever heard of PANDAS) became "full-blown" after extractions (for orthodontic reasons). In hindsight she was strep positive (throat cultured when she was in the hosp. for acute food refusal/anorexia from PANDAS). We believe that with the tooth extraction, strep in the mouth got released into the blood stream (also stress of extraction can open the blood brain barrier). Have you done current throat cultures on all family members? I would do that. I wonder if your non-PANDAS son's tetracycline helped him from becoming full-blown PANDAS (over the time-period he was on tetracycline) as well. And, being on abs for the extraction likely was a big help as well.

 

I am certainly interested to see how your 2 son's labwork turn out. BTW, antibiotic use can lower strep titers, so keep that in mind when you look at your non-pandas son's titers.

 

PS. Where do you live?

 

 

Hi, I live in Charlottesville, VA. The University of Virginia is here, a major excellent hospital system, but there is no local doctor that has any PANDAS expertise. Even the neurologists here don't know a thing.

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yes, EAmom read my mind about the second son being pandas/pitand also and the tetracycline use helping him. Have your doctor friend read the Sammy book and read all the things you print, she may likely be a non-believer. We all have lots of strep in our mouth all the time that is normal etc. Strep is part of what causes cavities. Lots of bacteria in there. That's why they used to have people with mitral valve prolapse take abx with dental work. I would bet that had something to do with it, and perhaps exposure to his aunt. Sounds like you have a good base to start with. Good luck.

 

http://en.wikipedia.org/wiki/Streptococcus_sanguinis

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Hi, I live in Charlottesville, VA. The University of Virginia is here, a major excellent hospital system, but there is no local doctor that has any PANDAS expertise. Even the neurologists here don't know a thing.

 

Here are a couple of docs form the helpful docs thread http://www.latitudes.org/forums/index.php?showtopic=5023&pid=35002&start=&st=#entry35002 :

Pediatrician, Dr. Julie Fortner - Someone who will LISTEN! Staff (receptionist and nurse) extremely sympathetic, warm and friendly.

http://www.richmondp...f...t=1&Child=1

 

Pediatric Infectious Disease Specialist, Dr. William C. Koch

http://www.vcuchildr...g/?id=716&sid=4

 

 

Also, Dr. Elizabeth Latimer is in DC...she is a pediatric neurologist and lots of folks on this forum use her. She's one of the top PANDAS docs in the country.

Edited by EAMom
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