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Nightmare PANDAS/tics newbie - need help/advice


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Hi and welcome!   Good for you for testing with Igenex.   Both bands 31 and 39 are lyme specific, meaning that only an infection with borellia (lyme) will result in these bands showing up on the

Steroids are a tough one. They tend to work temporarily for PANDAS kids because they suppress the immune response causing the inflammation in the brain, as well as reduce the inflammation in general.

OK - gotta get this off my chest. Our Moleculara results are back - they came in 10 days ago. Dr. L was supposed to review them with us last Friday (a week after results were in). On Friday morning we are told she is not well - and then in the same breath - that she is leaving for a vacation the next day until July 10 - after which, at some point, her office will reschedule our appointment. During this time we will not be given the results (since the doc has not reviewed them).

 

I almost lost it!! I have a child who has been sick for 7 months - fighting what seems to be a ghost and this is the treatment we get. I found this practice to be highly unprofessional - and indeed this latest behavior borders on the immoral. We are not going back.....not sure how she is so highly regarded...

 

We are now trying to get the results to Dr. T

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  • 4 weeks later...

Update to our situation.

1. Moleculara results say "PANDAS Likely".

2. Advanced Labs prelim results for Lyme are negative. Tests for co-infections are negative

3. Coxsackie was positive but we have almost eliminated it

4. We eliminated Candida a while ago with Diflucan

5. Strep titers have come back consistently low - in some cases too low in Dr. T's opinion

 

AbX seems to be helping (albeit very slowly) - its been 7 days so far on Augmentin (1 pill AM) and Azithromycin (1 pill PM)

 

Does anyone know what could be going on? If son is PANDAS Likely - does that not mean there is an infection - if so what other infection can/should we check for? Or is there an autoimmunity issue? Methylation issue?

 

Sorry for all the questions - still trying to understand what could be happening...

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for both ds and dd lyme tests were very similar to yours. dr b and igenex call it positive for lyme and treat it as lyme.

the process is long and requires patience. we've been on abx for 10 months now and have seen only gradual change. some posts on this list indicate improvements in lyme cases after 2 years on abx.

we are doing exactly as you are with very similar results. if there is a faster way, I would like to know about it.

 

Pandas is caused by an autoimmune reaction and not directly by bacteria like strep.

if there are other infections than those you checked already, the treatment would still be the same, just what you are doing right now.

and yes, you can try to improve methylation if you have not done that already.

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What does the lyme test say exactly? Many physicians who are not trained in lyme will read a test as negative that is really positive. You need a lyme specialist to read a lyme test. Dr. T is wonderful but he is not a lyme specialist. You need to educate yourself in this area as it can be a trigger for PANS. Not saying this is definately it, but should be ruled out by something other than a "negative" on the test results. JMHO.

 

Dedee

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nitshel -- we did consider IVIG and are still considering it. but we'll do it only if the slow but steady improvement stops or if Dr b suggests that we should have it.

in my understanding, for our kids IVIG would not be a magic bullet and we would likely have to do it more than once. this way, if they get much worse, we know what we are going to do. also, it would be very hard to find a dr to give them IVIG with present symptoms.

 

our kids were probably born with lyme (dw has it too) and it is too late for quick fixes -- apparently, if you catch PANDAS early, IVIG could be a magic bullet for some organisms.

 

in my understanding, kids that have PANDAS have something other in addition to bacterial infection wrong with them. there is a specific way their organism reacts, the open BBB, auto-immune issues, and so on. so, one IVIG would not -- as I understand -- correct all those kinds of problems.

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Thanks pr40 - Are you giving supplements to boost the immune system? If so, which ones have you found more effective?

 

The improvement in our son is so gradual it could be mistaken for waxing/waning but we are hopeful that these are real gains....

 

Also, we're considering giving NAC (there are several threads on this forum that talk about it). Have you considered this?

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Update to our situation.

1. Moleculara results say "PANDAS Likely".

2. Advanced Labs prelim results for Lyme are negative. Tests for co-infections are negative

3. Coxsackie was positive but we have almost eliminated it

4. We eliminated Candida a while ago with Diflucan

5. Strep titers have come back consistently low - in some cases too low in Dr. T's opinion

 

AbX seems to be helping (albeit very slowly) - its been 7 days so far on Augmentin (1 pill AM) and Azithromycin (1 pill PM)

 

Does anyone know what could be going on? If son is PANDAS Likely - does that not mean there is an infection - if so what other infection can/should we check for? Or is there an autoimmunity issue? Methylation issue?

 

Sorry for all the questions - still trying to understand what could be happening...

What is a "prelim result" from Advanced Labs? When was the sample drawn and how long had your son been off abx prior to the blood draw? Advanced Labs can have false negatives, although its less likely than with a test based on an immune response. I think the false neg rate is 6%. But prior antibiotic use can affect the results. We waited until my son had been off abx for 4 months before doing the Advanced Labs test (waiting for results now), and I had been off abx for about 7 months and tested positive.

 

Our son was in the PANDAS range on the Cunningham test and it turned out he had Lyme, probably from birth. The Cunningham test does not tell you whether your child has current infections or what they are.

 

Also, IMHO, everyone with a PANS/PANDAS child should look at methylation at some point.

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@ Mama2Alex: Apparently Advanced Labs sends a preliminary result in 10 days - in our case it was "Indeterminate" so now they will culture the blood for 8 weeks and provide a definitive answer

 

We have now noticed that son's tics (both vocal and motor) get much worse while 2) Chewing food and 2) Brushing teeth - can anyone hazard a guess why this might be? Could there be a TMJ connection (Temporomandibular joint)?

 

BTW we did go to Dr. Stack (who specializes in treating tics with a dental device). He put some popsicle sticks in our son's mouth to see if tics subsided - didn't seem to make much difference - but then our son wasn't ticcing much in his office so it was hard to tell.

 

Any theories to explain why our son gets worse while eating and brushing teeth would be useful....these are unusual "triggers"....

 

Thanks!

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Just encountering some strange puzling behavior - we are now trying to eliminate with antibiotics. We are working with Dr. T. I am writing because we are puzzled about his tic triggers. He seems to be doing a little better but when he sits down to eat or brushes his teeth, his tics come back. When he sits down to eat, he starts to grimace and his vocal tics (repeated random word utterances) come back. When he brushes his teeth, his vocal tics come back.

 

As these are triggered by some actions - like eating and brushing - I am wondering if Dr. Stacks (VA) work is worth looking into.

 

DS is on Augmentin, Zithromycin and anti virals.

 

Hope any one of you here can help us with this puzzling behavior.

 

Many thanks

Nitshel

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Just a thought here, does your son have any contamination fears (germaphobia)? Just wondering if he gets anxious about eating or putting things in his mouth such as a toothbrush, etc..... This could cause a ramp-up of his anxiety and therefore making his tics worse. My sons tics seem to get worse when he is anxious or excited.... Especially when he has a test the next day or if we are getting ready to go to a watermark or something he is excited about? How is your sons appetite? So many eating issues can develop from pandas /pans.

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Hi Missmom - he used to be a bit of a germaphobe when he was younger but not much bothered by it now. Its really as though the act of opening his mouth triggers something. Son's appetite is good - partly due to the Risperdal he is on I suspect. He is off gluten and dairy and limited sugar.

 

We thought of getting the food allergy test done but I hear those are rife with false positives so right now we are doing the elimination diet. Beyond the gluten , dairy and sugar I fear that any more restrictions will likely take away whatever childhood pleasure he has so we are taking it slow.

 

Still looking for a "cause"/trigger after 9 mnths. Also its been 8 weeks and we have not got 23&me back - hopefully that will shed a light on possible methylation issues.

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If you google dr stack and dr sims you will find that they r orthodontists who have had success with some patients in reducing or eliminating tics (all kinds, not just facial tics) with a specific orthodontic device that they developed. There is a test you can do at home by stacking Popsicle sticks or similar items over the molars to separate the back jaws. If that helps reduce tics then you may be a goo candidate for this device. Where do you live?

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Hi Ifran - yes we actually did visit with Dr. Stack. He did ask us to take the "popsicle stick test" at home. It's hard to tell whether the test works because son's tics do not come at regular intervals - they come in a large batch suddenly - and its hard for a 7 yr old to keep the popsicles in his mouth for more than a few minutes.

 

We might get an MRI done - that might be a definitive test - will update this thread with what we find...

 

Thanks to all for support and advice....

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