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Our otherwise healthy son has been ticcing for almost 4 months...


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"It is my humble opinion that yes things like aspertame can trigger neurological symptoms, but in my daughter's case, I believe that was only after the blood brain barrier had been breeched by an infectious agent like strep or myco p. IMHO you have to investigate the infections."

 

Thank you for sharing this, it helps put things in the right place. I'm curious then if after this blood/brain barrier has been reached, if this is what opens individuals up to medications, artifical sweetners, flavors, color and various other triggers whereas some they have seemingly no effect on others. Interesting! Thank you for sharing your opinion and experience! Jennifer

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Hi,

 

I'm new at this too. But do you have the list of criteria for a PANDAS diagnosis? It's my understanding that he would need to also have a host of behaviorial symptoms along with the tic. And the tic must have appeared suddenly.

 

 

Is this the current criteria for PANDAS diagnosis (source: NIMH Pediatrics Development's site)?

 

1.Presence of Obsessive-compulsive disorder and/or a tic disorder

2.Pediatric onset of symptoms (age 3 years to puberty)

3.Episodic course of symptom severity

4.Association with group A Beta-hemolytic streptococcal infection (a positive throat culture for strep. or history of Scarlet Fever.)

5.Association with neurological abnormalities (motoric hyperactivity, or adventitious movements, such as choreiform movements)

Edited by peacebstill
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Fix it this is my daughter. Neverending tics.

On antibiotics they cleared but came back after 2 months.

IVIG behaviors cleared(mostly) but tics still there.

What have you found to remedy.so frustrating.

have not had T&A out but have appointment with ENT.

Would love to hear others thoughts.

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Thank you everyone for your responses and information, I'm taking notes and listening to others' experiences and trying to connect more dots - this will surely make for an incredible picture - one that I am interested in drawing some days more than others, but it's all going somewhere, right!?

 

We have an appt with the neurologist in a few weeks and I'd like to be well prepared to look into all possible causes of these tics. In your experiences, where have you found the best starting places/basics to cover? I'm told the doctor we're seeing takes an active approach to her patients and also her colleague is researching PANDAS, although it seems to be with measured reserve. I'm not even sure what our son has really, but am willing to consider everything until we can get to the bottom of it - surely we can get to the bottom of this, right?!! Would you add anything to the list below? Thank you, Jennifer

PANDAS Criteria for Diagnosis (source NIMH) - we can check off all but #4

1.Presence of Obsessive-compulsive disorder and/or a tic disorder

2.Pediatric onset of symptoms (age 3 years to puberty)

3.Episodic course of symptom severity

4.Association with group A Beta-hemolytic streptococcal infection (a positive throat culture for strep. or history of Scarlet Fever.) Our son has been sick a lot with colds/respiratory infection, including pneumonia, however, the Strep A test came back as negative - any idea if this means it is NOT PANDAS or is it possible that the test would not show Strep A that compromised his system years ago???

5.Association with neurological abnormalities (motoric hyperactivity, or adventitious movements, such as choreiform movements)

 

From this post thread alone, here's what some have suggested:

 

Possible Causes of Tics

-Strep

-Mycoplasma

-Lyme/Co-infections

-Parasites

-Molds

-Allergens - especially food for gluten/caessein - Son's skin prick test showed reaction to cats - nothing to molds, environment etc. Son's IGE test within normal limits - is this where a sensitivity to food would have shown up?

-Environmental Toxins

 

Basic Tests to Have Done

-mycoplasma pneumonia

-lyme western blot -have any of you done this on a whim and been surprised by positive results? I'm doubtful there's a connection here, but willing to turn over every stone

-ASO

-Antidnase B Strep

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peacebestill,

welcome. I agree with all above. also want to ask you if you sone has had any changes in any behavior that you remember. ANYTHING odd. any insomina? bedwetting? nightmare? more frequent need to urinate? unusual fears or somehting that really bothers him? separation anxiety? obsessed with anything?asking "reassurance" questions?concerned with body image? any compulsions?

 

my son presented with tics..no strep. We had some OCD, but I didn't know what OCD was at the time, and no one asked me about his behavior. Really, its anything a bit off. No one asked me if he had some nightmares recently, or wet his bed. Seemingly normal things that almost all kids do. These behaviors may have started a few weeks before the ticcing.

 

I will give you an example with my son - his very fist pandas sign was he was becoming a pain in the &%# to eat dinner with. It was sort of typical bickering with his sister about talking with food in your mouth, other manners. It escalated over a few weeks he was extremely irritated by the noises we made (glaring at us, and expressing disapporval of our seemingly flawless table manners). And his mood overall became irritable. These were the first signs..then I think some bed wetting, some nightmares or insomnia..not every night, at first once a week, then 3-5 times a week...so that is how it started for us. And a couple weeks later the tics.

 

Your son could just have a transient tic, but as advised by all before me in this thread, I'd make sure that all infection is checked for an eliminated. And if the tic persists I'd run a cunninghams test (in addition to the ones recommmended above)- a blood test (its actually a study) done by madeline cunningham at u of OK that tests for anti-neuronal antibodies in the blood. you can search the forum for her contact info. There is high correlation between these antibodies and pandas.

 

you can search the forum or post another question for her contact info if and when you need it.

 

hang in there. tics are soooo hard to watch. And please let us know if he has any of the other symptoms above. best - norcalmom

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peacebestill,

welcome. I agree with all above. also want to ask you if you sone has had any changes in any behavior that you remember. ANYTHING odd. any insomina? bedwetting? nightmare? more frequent need to urinate? unusual fears or somehting that really bothers him? separation anxiety? obsessed with anything?asking "reassurance" questions?concerned with body image? any compulsions?

 

Thank you for sharing. I haven't noticed any OCD'ish behaviours.

 

As for some of the things you mentioned, perhaps bedwetting would fit in here, maybe some of his emotional outbursts (cries when upset over little things or misunderstandings) and perhaps his fidgity-ness at the dinner table - he can't seem to sit still sometimes, teacher also noted he was fidgity at school-for example during circle time. There are periods where he'll wet the bed more often - it usually happens just before he gets sick. He is usually a fairly solid sleeper, although sometimes he'll grind his teeth and talk in his sleep - magnesium seemed to help a lot with this. Would this fit into the picture?

 

Other than that he really is a happy well adjusted 6 year old boy! He plays hockey, participtes in school, has friends...aside from his head nodding constantly!

 

Your son could just have a transient tic, but as advised by all before me in this thread, I'd make sure that all infection is checked for an eliminated. And if the tic persists I'd run a cunninghams test (in addition to the ones recommmended above)- a blood test (its actually a study) done by madeline cunningham at u of OK that tests for anti-neuronal antibodies in the blood. you can search the forum for her contact info. There is high correlation between these antibodies and pandas.

 

If at this next neurolist appt we can do the tests for Cunningham's and those listed above, do you think we'd be able to figure out a clearer direction to pursue - PANDAS or transient tics? Does it work that way?

 

Thank you again for sharing and helping us along,

 

Jennifer

Edited by peacebstill
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That seems to be a question noone can answer....I am looking at a very similar situation. Cunningham camK was 168 (high) and dr. Latimer was not sold on pandas. Waited for antineuronal antibidies results---got them a few days ago. Anti-lysoganglioside was twice high normal, and anti D1 was 4 times highest normal---but still noone can say. In cunninghams letter to parents, she says these antibodies are often elevated in pandas, tourettes, and sydenham chorea....so not sure how they really help to decipher between touretteS and pandas. We have had issues (started w/ocd-ish stuff a couple years ago) that I thought were quirky, but now its been so long, 3 tics started early spring, then after high fever in june, head to toe tics with no letting up. On augmentin 3 weeks now. No improvement. Strep titers normal, myco norMal, lyme and igenix lyme normal.

 

So I guesss I really do wonder why the cunningham tests are so important if everyone just says they are "research" and not definitive???

 

peacebestill,

welcome. I agree with all above. also want to ask you if you sone has had any changes in any behavior that you remember. ANYTHING odd. any insomina? bedwetting? nightmare? more frequent need to urinate? unusual fears or somehting that really bothers him? separation anxiety? obsessed with anything?asking "reassurance" questions?concerned with body image? any compulsions?

 

Thank you for sharing. Maybe bedwetting would fit in here, maybe some of his emotional outbursts (cries when upset over little things or misunderstandings) and perhaps his fidgity-ness at the dinner table - he can't seem to sit still sometimes, teacher also noted he was fidgity at school-for example during circle time. There are periods where he'll wet the bed more often - it usually happens just before he gets sick. He is usually a fairly solid sleeper, although sometimes he'll grind his teeth and talk in his sleep - magnesium seemed to help a lot with this. Would this fit into the picture?

 

Your son could just have a transient tic, but as advised by all before me in this thread, I'd make sure that all infection is checked for an eliminated. And if the tic persists I'd run a cunninghams test (in addition to the ones recommmended above)- a blood test (its actually a study) done by madeline cunningham at u of OK that tests for anti-neuronal antibodies in the blood. you can search the forum for her contact info. There is high correlation between these antibodies and pandas.

 

If at this next neurolist appt we can do the tests for Cunningham's and those listed above, do you think we'd be able to figure out a clearer direction to pursue - PANDAS or transient tics? Does it work that way?

 

Thank you again for sharing and helping us along,

 

Jennifer

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  • 1 month later...

Hi,

 

I'm curious now...we've been told by the several specialists we've seen that they are not worried about our son's health (bloodwork & mri "normal" - actually waiting for one last round of tests to get back this week) and hope that the tics will go away on their own. Of course I'm not content answer nor willing to settle for this. We've been referred to a movement specialist 6 months down the road to approaches PANDAS with cautious skepticism and says the research is not conclusive to suggest treatment (they are expecting the tics go away before the appt is due).

 

We're moving in the right direction for healthy diet, magnesium, multivitamins, omegas etc. Aside from the tics, this is actually the healthiest year he has had since being born. I'm wondering, if our otherwise healthy 6 year old son does have an autoimmune challenge or there is anti-neural activity going on - is it not worth pursing treatment with antibiotics? If it works, it works and if it doesn't.....well, try another antibiotic or other treatment. Wouldn't this be better than just "wishing" or "hoping" it goes away? Is there something specific that shows up on a blood test that makes it obvious that antibiotics should be given a try? Any thoughts?

 

Jennifer

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Tampicc, did the head nod come back after a while? Even after the steroids? How long had the head nod been there before you tried the steroids? How long and what dose of steroids did you give?

 

Thanks, just want to know because we have a tic/compulsion now for 5 months now that is not going away on just abx. Have been afraid of trying steroid but have to do something.

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  • 4 months later...

Hi,

 

Someone had written on another post that they wished that people would update their posts so they could hear about how things have progressed. So, I will write a little and ask some more questions as I forever dig and research for more answers.

 

We had a great few months in Feb/March (still had tics each day, but weren't intense and were barely noticeable), but since mid March, our son's tics were consistent and some new vocal ones cropped up - humming, chomping. We're seeing a neurologist who approaches PANDAS with skepticism and measure reserve, yet he is willing to do a course of abx and see what happens. So now we're going to see when we will be able to start that. Anything we should know or ask about before we start?

 

Ok. Now my question is which abx? How is it decided? Do you take a stab in the dark? All blood tests are normal, mri normal etc. And should it just be abx or should it be steroids at same time? I need to ask him questions on how he sees the protocol going - but I want advice from those who have been here before. Tell me again the basics of what is to be done, what to ask about, what to watch for, to supplement with probiotics or not etc. - or please link me to where this information has already been written many times over.

 

I'm also curious if our son has LD and will be getting him tested. I've only now recalled he had a funky bite (bullseye) after a camping weekend almost a year ago. A month later he began losing weight, having fatigue, and I noticed some of his joint/body movements were getting a little odd. I'm curious. It was that month he had the flu, cold (& possible ear infection) - which I was afraid was turning into a chest cold after 3 weeks and the doc put him on abx - Amoxi. It was about 2 weeks after that our son started severe head nods - looked more like bowing or rocking out and other tics ensued from there.

 

I know this is really basic stuff I'm trying to figure out, but can anyone tell me if I've got this right between PANDAS and LD?

 

-they are both bacteria based - PANDAS intitially

-LD bacteria itself attacks the body on many levels - joints, muscles, nervous system, neurologically etc.

-PANDAS - after the antibodies attack the bacteria, they also begin to attack an area of the brain (BG / anti-

neurons)causing tics and OCD behaviours

-LD - you are treating the bacteria & PANDAS you are trying to control/decrease anti-neural activity?

-life cycle/reproduction of LD bacteria is said to be 4 weeks, as far as I have observed - PANDAS waxes and wanes

in bursts depending on triggers - diet, allergies,environment, stress/anxiety etc.

 

Am I on the right road? So it's not all that exciting of an update. Our son is still has tics, they haven't gone away, he's doing well in school and still seems to be a well adjusted kid, and we might be trying abx soon.

 

That's all from here for now, comments and suggestions and re-directions welcome!

 

Jen

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I don't know enough to address your LD concerns, but on the PANDAS front, I'd get a throat swab (even w/o typical strep symptoms) before doing abx. As far as what abx, it seems most of our PANDAS kiddos do best on either azithromycin or augmentin (extended release especially).

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Hi Jen-

 

I skimmed this thread, and wanted to give you some input. First, I am sorry you are dealing with this. I have two daughters with pandas/ questionable lyme.

 

For both of my daughters, ALL blood testing comes back normal. The ONLY test that showed anything for them was Cunningham's test- high anti neurals. (unfortunately, her study is closed to enrollment). In the last six months we tested for EVERYTHING, and all we got was questionable lyme.

 

My girls have not tics, they have ocd.

 

We were VERY lucky to make the strep connection. Both girls had normal, unremarkable cases of strep prior- with no pandas. Then, the younger had an overnight and snowballing onset of ocd (didn't really understand it was ocd at the time, but knew something bad was happening). She had NO strep symptoms. Her friend was diagnosed with strep, so in desperation I googled strep and found pandas- it was her story exactly. Her older sister had the same experience, strep a few weeks later and the ONLY symptom was fatigue. Neither girl has ever had raised strep titers.

 

So- it IS possible that your child had strep, and you did not know it.

 

However, from your story- it does sound like lyme could be a concern. Lyme's hallmark is starting with a bullseye and flu like symptoms (although not everyone has that experience). Lyme is very difficult to test for, as many doctors will read your results differently. My kids appear to have had some exposure to lyme, yet I am still not convinced they have chronic lyme, or that it is the source of their problems. We have been able to have great, yet temporary, remissions with pandas treatment.

 

As a first line of treatment, for either, starting antibiotics is great. With pandas, by the end of the month you may see improvement (although at some points for my girls we needed more than abx). You will want to note how he responds to the abx. If he responds very well, it may help to push you towards pandas. If you see a worsening (herxing) then I would lean more toward lyme.

 

It is a very confusing road, to say the least. But there is much hope. Certainly, lyme or pandas, one is less complicated than both- so lets hope that is what you are dealing with.

 

good luck!

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Hi,

 

Someone had written on another post that they wished that people would update their posts so they could hear about how things have progressed. So, I will write a little and ask some more questions as I forever dig and research for more answers.

 

We had a great few months in Feb/March (still had tics each day, but weren't intense and were barely noticeable), but since mid March, our son's tics were consistent and some new vocal ones cropped up - humming, chomping. We're seeing a neurologist who approaches PANDAS with skepticism and measure reserve, yet he is willing to do a course of abx and see what happens. So now we're going to see when we will be able to start that. Anything we should know or ask about before we start?

 

Ok. Now my question is which abx? How is it decided? Do you take a stab in the dark? All blood tests are normal, mri normal etc. And should it just be abx or should it be steroids at same time? I need to ask him questions on how he sees the protocol going - but I want advice from those who have been here before. Tell me again the basics of what is to be done, what to ask about, what to watch for, to supplement with probiotics or not etc. - or please link me to where this information has already been written many times over.

 

I'm also curious if our son has LD and will be getting him tested. I've only now recalled he had a funky bite (bullseye) after a camping weekend almost a year ago. A month later he began losing weight, having fatigue, and I noticed some of his joint/body movements were getting a little odd. I'm curious. It was that month he had the flu, cold (& possible ear infection) - which I was afraid was turning into a chest cold after 3 weeks and the doc put him on abx - Amoxi. It was about 2 weeks after that our son started severe head nods - looked more like bowing or rocking out and other tics ensued from there.

 

I know this is really basic stuff I'm trying to figure out, but can anyone tell me if I've got this right between PANDAS and LD?

 

-they are both bacteria based - PANDAS intitially

-LD bacteria itself attacks the body on many levels - joints, muscles, nervous system, neurologically etc.

-PANDAS - after the antibodies attack the bacteria, they also begin to attack an area of the brain (BG / anti-

neurons)causing tics and OCD behaviours

-LD - you are treating the bacteria & PANDAS you are trying to control/decrease anti-neural activity?

-life cycle/reproduction of LD bacteria is said to be 4 weeks, as far as I have observed - PANDAS waxes and wanes

in bursts depending on triggers - diet, allergies,environment, stress/anxiety etc.

 

Am I on the right road? So it's not all that exciting of an update. Our son is still has tics, they haven't gone away, he's doing well in school and still seems to be a well adjusted kid, and we might be trying abx soon.

 

That's all from here for now, comments and suggestions and re-directions welcome!

 

Jen

 

It is good that you are posting. You have much going on right now.

 

If you've not done so already, you may want to copy this post onto the lyme board. They will have good advice for you. I would find a lyme doctor if I were you. If you start on antibiotics right now, it could have an effect on your lyme tests, as some antibiotics put lyme into "hiding" and make it harder to deterct.... so I would proceed with caution until you get to a lyme doctor or do an igenex test.

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