Teen:incapacitating tics and issues

[GloryMom]

Hi All,

I'm new here and I'm wondering if anyone else has come across these types of tics, and could it be related to PANDAS/PANS?

 

I guess I'll give the rundown of our situation for background.

My daughter started having tics at age 12. They started after she was really sick (sore throat, headache etc)for a week, but she was negative for strep. Our other daughter was sick in hospital(hindsight possible pandas/pain processing disorder) and I didn't do a good job of paying attention to other daughter. She spent a lot of time in her room and we noticed her doing things but we thought it was for attention(with sister sick we knew she needed more but didn't have the energy to give it).

 

Within 7 months she had every single tic possible (complex vocal, gross motor, copropraxia, coprolalia, and a few more and they happened all day and much of the night), she had severe anxiety, sensory sensitivities, depression, ocd, panic attacks where she blindly runs away, and she had self-injurious tics. She has auditory and visual hallucinations and she also developed purging behaviour, and self-harm. Her schoolwork has stagnated and has worsened in math/science but I don't know if that's because of the interruptions to her thinking from ticcing so much or another cause. The daughter who I thought was totally normal, with acknowledged very mild tendencies to ocd, was now struggling so much.

 

She is now 15 and is still struggling. Her psychiatrist is excellent and he believes that there's more going on than TS(he's a top person in his field). The only pediatrician in our area who possibly deals with Pandas spent 15 minutes with her, insulted her, and refused to treat her. She's been on fluoxetine, respiridal, and citalopram with no changes seen.

 

The tic that is most problematic is what we call a seizure tic. It's not a seizure (the neurologist actually saw one) but it looks similar. Out of the blue she falls down and her muscles all tense up, she arches her back or flexes into gymnastic positions(she dances and is very flexible and strong). All of her muscles are tense and then she often bangs the back of her head, twists around slowly, and then the muscles contract inward rapidly like she's a ball, and then flex outwards again. This goes on from anywhere between 10 min and 90 min. She has absolutely no control but she can hear. She can't see or control breathing(like holding her breath).

 

As a result of this tic she has had 3 concussions, has almost drowned, has crashed her bike, and been generally bruised and embarrassed. Her psychiatrist who is treating her agrees with me when we say can't find a trigger. It happens when she's asleep, when she's quietly reading on the couch, when she's baking, out for a family bike ride, or when she's at the mall.

 

This has made things really hard for my daughter over and above the other things that she deals with. We're still trying to see if we can get her diagnosed with Pans/pandas, as her symptoms seem to veer away from TS. Her psychiatrist says there's no sign of psychosis from schizophrenia (which I think is why she was on respiridal). On the other hand I don't want to chase down a diagnosis that is inaccurate. I just want my daughter to get some relief and some hope that there is something we can do to help her feel better.

 

Sorry for such a long post but it's complicated...If anyone has experienced tics like my daughter, I'd love to hear about it and thanks for reading.

[MomWithOCDSon]

Wow! So sorry to hear what you're going through!

 

Please forgive my ignorance, but this dramatic "seizure tic" that you describe . . . have you pursued a second opinion as to whether it's actually a seizure versus a tic? This seems to be a very complex tic, if that is "all" it is, and if it is so uncontrollable that it occurs when she's asleep, swimming, etc. and endangers her physically (concussions, etc.), to an untrained layperson like myself, it sounds more like an actual seizure than a tic. I know kids that have seizure disorder diagnoses, and their seizures have a lot of similarity with this one of your daughters. On the flip side, though I don't have a whole lot of experience with TS itself, I've been here on the PANDAS/PANs forum for several years now, and I've never seen a "tic" described in a similar manner as what you're describing.

 

Has your daughter ever been prescribed an anti-seizure medication such as trileptal or lamictal, even if only on a trial basis? Some of us with PANDAS kids have been given prescriptions for lamictal "off-label" because our kids weren't technically diagnosed with a seizure disorder but because it is beneficial on other fronts (modulates brain glutamate, an excess of which can contribute to behavioral disturbances, including OCD).

 

In short, given as your daughter's troubles began on the heels of a discernible medical illness, I think it is highly possible PANDAS/PANs is at issue here. Did the pediatrician that your daughter saw -- though dismissive -- order any blood work at all? Have you had immune panels done, or the Cunningham panel? If your regular pediatrician is of no help in this regard, will your psychiatrist order the blood work on your behalf? When you say she was "negative for strep," do you mean by throat swab? My son was ALWAYS negative for strep by throat swab; it wasn't until we had his strep titers tested that we realized he DID have strep -- he was just classically asymptomatic to it. That being said, it doesn't have to be strep that sets off this condition, either; it could be myco p, lyme, Epstein barr, any number of other microbes that set off an immune response/antibodies that get past the blood brain barrier (BBB) and wreak havoc in the brain.

 

I would follow your instincts and continue to pursue some real answers that might, in the end, provide your daughter some relief. If you haven't already, you might drop a similar post regarding this tic over on the TS board here, too, and see if anyone who participates there can share some similar experiences and/or successful interventions with you.

 

All the best.

[GloryMom]

Thanks for your reply. When I mentioned that she was negative for strep, it was just that illness, and yes it was a throat swab. Her father took her in as I was at the hospital with her sister for a week. They had both had strep a few times the year before.

My 15yo has had various bloodwork panels done, but I don't believe they do the Cunningham panel in our province(Alberta). The pediatrician said that he would treat her younger sister (although she's generally healthy now) as in his opinion her history seemed to indicate pans/pandas, but refused to treat my 15yo. The psychiatrist has argued with him(in his words) but the pediatrician refuses to treat her. Shrug...It might be because of her self-harming as that is what he insulted her about ("why do they do that(cutting)to themselves. They should just talk to someone!--my opinion-yes it's a maladaptive coping strategy but you don't get to judge her when you know nothing about the she's living)

 

So right now the psychiatrist is trying to decrease inflammation-has put her on probiotics. If there's any test that gives him the indication that he can put her on antibiotics or do IVIG he will, he just needs some proof and someone else to actually treat it because it's not his area and he doesn't want to do something wrong. (To complicate things my daughters are both allergic to amoxicillin, so prophylactic antibiotics is not something to try on a guess) All of my 15 yo's symptoms were well defined before she was put on any psych meds, so he's not a med pusher at all.

 

I will keep pursuing this. I just would like some indication that we're on the right track. I do feel ok that it's the psychiatrist that is saying that there is a strong chance there's something else going on. He is the TS expert in Canada, so he knows TS. We just want to help our daughter and give her some hope. She really needs it as life is super hard and her mood has been really bad the last few months(meds are still locked up and she's addicted to cutting-and yes she's been seeing a psychologist)

 

I'm not trying to spew out all of the problems, it's just that it is a really complex situation and background is needed in order for people to help. Btw, no one at our local TS support group has anything similar at all.

 

ETA: she has had EEG and a sleep deprived EEG and they're both normal.

Edited July 12, 2016 by GloryMom

[LNN]

My daughter had uncontrollable muscle spasms that would last 90 min - 10 hrs per day. They were not the stiff/writhing motions you describe but involved rapid jerking and twitching of limbs - much like Parkinsons. She also had panic attacks, severe sensory issues, depression, OCD and ADHD. Her early medical symptoms were also "neglected" because we were dealing with a very ill sibling (who had undiagnosed Lyme).

 

Antibiotics and antifungals for many months led to resolution. In her case, it was neurological complications from mold (in her school but once the mold toxins get in you, the problem goes with you wherever you go) and a related chronic sinus infection (which caused the Pans symptoms). Her EEG was also normal. She is also allergic to penicillins, cephalosporins and fluoroquinolone family of antibiotics. So we started using herbal antibiotics with great success.

 

My son had severe motor and vocal tics along with OCD and anxiety and rage. His issues stemmed from Pandas and Lyme.

 

Our most informative tests were tests for Lyme, a nasal swab that was cultured for strep, staph and mold, and blood work that looked for inflammation markers that often accompany mold illnesses. If you want additional information on any of these, let me know and I'll post links.

 

I think you're right to pursue infection based causes. You may want to send a message to RowingMom, a member who isn't on the forum very much anymore but is in Canada and successfully treated her daughter for Lyme. She may be very helpful in navigating your health system and testing.

[GloryMom]

Thanks so much for the offer of help. I hadn't thought of mold and our old house had mold in their rooms (we moved 2 months ago). If you could send me the links to that information I would so appreciate it.

 

My younger daughter had been test d for Lyme but it was negative. She had a condition that included low fevers, stomach pain, headaches, light sensitivity, and pain in her legs, so much so that she couldn't walk for over 14 months. Every 6 weeks or so something else would go wrong and it was truly awful. Especially because no one could/would help her. They just said it's not_____, and then I'd get a referral to the next doctor. Hence me totally ingoring my older daughter's beginning problems.

 

The mold question gives me another avenue to pursue. Thanks

[tj21]

I'm sorry to hear all this, it's so tough!!

DS16 had severe tics starting way back, sometimes every 10 seconds, including copropraxia and coprolalia. Once we started PANS treatment things subsided and now when he has a flare (esp. after sleep-away camp), we can usually stabilize again w/extra Augmentin. I see that's not an option for you but the Trileptal or Lamictal is a good option; Trileptal has really stabilized my son's mood swings.

 

Also DS16 does not tic at night unless he wakes up. The "seizure" tic sounds like dystonia, which I had after a reaction to a med., years ago. Does your daughter remember them after and/or can describe them ?

 

Our most recent flare (2 months long, including loud yelping tics 10/minute all day long) correlated with an extremely elevated c4a level, and when retested a month later after the addition of a THIRD antibiotic, levels had normalized along with near-absence of all tics.

 

Best, Tracy

[LNN]

On your daughter's negative Lyme test - you may still want to pursue testing through a lab in California - Igenex http://www.igenex.com/Website/

What makes their test unique is 1) they test for two markers that are not screened for with other Lyme tests (markers that are highly specific for Lyme) and 2) they report results that are "indeterminate" meaning there was some reactivity but not strong enough to be called a positive. Other labs only report strongly positive. But sometimes a weakened immune system or a body that's battled a chronic infection isn't strong enough to produce a strongly positive. It only generates a "weak positive" or an "indeterminate" reaction. Igenex reports those "indeterminate" bands when other labs don't. So if you had 5 "IND" results (using 5 only as an example), any other lab would tell you you were negative for Lyme. But Igenex will tell you you had 5 INDs - and that, when put in context with symptoms that suggest Lyme, will make many Lyme-literate doctors (LLMDs) give a Lyme diagnosis. So something to consider if you can get the test.

 

On mold...the doctor who's done the most research on mold is Ritchie Shoemaker, who says his research suggests that 25% of the population is genetically unable to rid the body of mold toxins. When mold toxins get into the body, the body is supposed to produce antibodies against those toxins and place little stickers on them. Then macrophages (white blood cells) are supposed to see the stickers and surround the toxin (much like PacMan eating dots) and then be eliminated in the body's waste. 25% of us can't produce antibodies or stickers. Our bodies see the toxins, and react by producing inflammation. But without those stickers, the macrophages can't eat the enemy, so those toxins just keep re-circulating in our bodies, month after month, even after you've left the moldy environment.

 

So the first thing Shoemaker suggests is to run a genetic test called HLA-DR that will tell you if you're in that 25%. If you are, and you know you've been in a moldy environment, then you run additional blood work that measure inflammation - a marker called C4a which measures the immune compliment system - only becomes elevated for 3 reasons - Lyme, Lupus and Mold. If C4a is elevated, you look at markers that show if your body is trying to quell inflammation - MSH, VEGF and others. If all these labs paint a picture showing a body struggling - unsuccessfully - to rid itself of an invader - then you can start to follow Shoemaker's protocol. If you're able to get a doctor to order some of these labs and it looks like something to pursue, you can always PM me for details on the protocol or you can search this forum for some mold discussions (many of them from the '2010-2012 time frame). Shoemaker's website is survivingmold.com and the lists of tests he recommends is http://www.survivingmold.com/diagnosis/lab-tests

 

As for mold causing PANS symptoms, when my daughter was repeatedly exposed to mold int he classroom, she developed respiratory problems that resulted in a chronic sinus infection. Shoemaker has named this type of infection MARCONS - multiple antibiotic resistant coagulase-negative stapholoccocus. MARCONS is resistant to many antibiotics and in Pandas kids, it can cause the body to make Th17 antibodies that migrate up the sinus tissues and cross the olfactory bulb and the blood brain barrier, provoking PANS symptoms. So you need to treat the MARCONS in addition to helping the body remove the mold toxins. For my daughter, who can't take most antibiotics, we ended up finding an herb called Alchornea and that worked wonders http://tipsdiscover.com/health/systemic-herbal-antibiotics-alchornea/

 

I get ours from woodlandsessence.com but RowingMom may have better sources for Canadians. I know she's also had lots of success with herbal antibiotics and herbal anti-inflammatories.

[PansLymeMom]

Hi!

I'm new here but I also live in Alberta and am trying to find help for my 18 year old daughter with PANS, Lyme, Mycoplasma, Bartonella and severe OCD.  I see this post is a year old, I hope that you have received treatment for your daughter already.

I was wondering if you could share the name of your doctors with us.  I have been fighting for over a year and a half to have my daughter treated with no luck.  I have been in contact with the Health advocate, the Health Minister and numerous specialists.  Nothing works.  Because her trigger is Lyme and Mycoplasma no one will touch this. I saw a paediatrician in Edmonton who was supposed to treat Pandas but he will only treat it if it is caused by strep, he thinks Lyme is "the disease of the day" and was totally dismissive.   Any help you could give me would be greatly appreciated.  I hope your daughter is recovering.

[MamaBeartoCharlie]

PanLymeMom,

We are in Ontario but receive care through Dr Ayla Wilson, an ND in BC. We have access to Dr Wendy Edwards in Ontario as well but Dr Wilson is very knowledgable and we have chosen to consult with her to address gut issues etc in addition to just receiving antibiotics. Dr Wilson will consult by phone. She is vey knowledgeable about both PANS and Lyme. You don't need a referral and can book through her website (she is away for the next two weeks but is generally really great about fitting patients in)

Dr Susan Bensler a rheumatologist at the Calgary Children's Universith who I beleive may also be treating PANS patients. Dr Paul Arnold is a psychiatrist who is now in Calgary as well, and I understand he has an open mind with respect to PANS/PANDAS. I'm not sure if he is prescribing antibiotics.  

There is an Ontario FB PANS/PANDAS Caregiver group as well that has grown to include parents in other provinces. I can't seem to include a link but you should be able to search it. Kerry Henrikson is an admin and can add you. 

Given you are dealing with Lyme and PANS I think Dr Wilson would be your best bet.

Edited July 28, 2017 by MamaBeartoCharlie

[Sirena]

I second the suggestions of getting the Igenix testing for Lyme and co-infections (be sure to include bartonella, babesia(s), mycoplasma and clamydia pneumonia. And febrile panel if not already done. IgGs with classes and Cunningham panel.

Reminds me of a neurolyme and and perhaps a reacitvated Moro reflex is part of the tic pattern. 

FYI, a PANDAS neuro told me in passing once that she noticed that patients that were cutters usually had Lyme, 

If Moro activation is part of the trigger, you/she may have a hard time figuring out but try to notice if unanticipated changes in stimuli might trigger such as a background sound (car passing by outside, door closing, someone coughing), or an unexpected touch, or change in lighting. 

Also--glutamate comment above was interesting to me because our doc recommended Zen, a GABA and Ltheanine combination, to help balance the glutamate. I'm still not quite believing how much it has helped our kids. You might want to try it while working on getting treatment.

 

 

[Lwei66]

Hi,

I am new here. My son just turned 8, he developed motor tics (shoulder, hand and head jerking) one month ago. We went to hospital and had blood test as well as throat swab. The throat swab came back negative for strep but his blood test came back with elevated strep antibodies. Doctor ordered 10 days of antibiotics.

My son's tics is very frequent (multiple jerking less than every 5 seconds).

Before this motor tics, we also noticed some exaggerated clearing of throat sounds couple of months before the motor tics onset. We got some coughing medicine for him at that time, and it went away, so we did not pay too much attention to it.

Anyway, I have been reading postings on this site, they are very helpful. But I am at lost what needs to be done for my son's tics.

Is it possible that the antibiotics prescribed by the doctor did not completely killed the strep? How can we be sure that he is now cleared of Strep? Should we do blood testing again? I also seen posting here stating that streps may hid behind tonsils which is hard to kill with antibiotics, is that true?

I am worried about my son's tics and his condition. Any advice is appreciated.

 

thanks,

[bobh]

Lwei66, so sorry to hear about the suffering (tics less than 5seconds apart - heartbreaking). There is so much that could be said in reply.  Briefly:

1) It is hard to be really sure the strep is gone if it is hidden, for example, in the tonsils or other biofilm (where antbiotics have a hard time getting to, as you have read).  Elevated antibodies can remain for months.

2) Doing another ASO titre now does have a significant benefit - it will say whether the antibodies are rising (indicating an active infection being fought right now) or falling (typically interpreted as a past infection that is resolving).  Doctors are typically trained not to give abx without a positive swab and just one ASOT measurement.  But I would still finish the abx - some kids react quickly (to the right abx), others take a month on abx to get better.

3) I am afraid to say that even if he appears to be cleared of strep now, just being exposed to it (now or in the future) can set some patients off.  Parents of those kids are hypervigilent about even brief exposures.  The flare can actually happen more quickly than it takes for the body to produce antibodies, via the innate immune system.

4) What can you do?  Find a PANS/PANDAS-aware doctor and see if that doctor can assess, and if he/she agrees its PANDAS/PANS, prescribe a longer abx trial, and be willing to try several abx's (which one works depends on the kid and the current infection).

[Lwei66]

Hi bobh,

Thanks for the reply.

After reading Shiela's book on Natural treatment for TS, I started to dig into the blood test that the hospital did for my son. I found out that the strep Titer level was only at 200, which means negative for strep infection for my son. So thinking back, it was possible that the abx (penicillin) might have aggregated the tics.

Anyway, since my last post, my DS' tics has improved great deal, from every second to not noticeable. In fact, my DS is telling us that he rarely has tics on a daily basis.

What we have done is to give Fish Oil, multi-vitamin supplement to my son in addition to Chinese Herbal medicine drinks. We also give some probiotics to my son.

Very fortunate to have found this site. People are very kind and always want to help and share information.

 

[Lwei66]

2 minutes ago, Lwei66 said:

Hi bobh,

Thanks for the reply.

After reading Shiela's book on Natural treatment for TS, I started to dig into the blood test that the hospital did for my son. I found out that the strep Titer level was only at 200, which means negative for strep infection for my son. So thinking back, it was possible that the abx (penicillin) might have aggregated the tics.

Anyway, since my last post, my DS' tics has improved great deal, from every second to not noticeable. In fact, my DS is telling us that he rarely has tics on a daily basis.

What we have done is to give Fish Oil, multi-vitamin supplement to my son in addition to Chinese Herbal medicine drinks. We also give some probiotics to my son.

Very fortunate to have found this site. People are very kind and always want to help and share information.

 

Just to add that we also put my DS on a organic food regime to reduce exposure to vegetables full of pesticide/herbicide.

[bobh]

Great that you found something that works!  If all the changes you made were at the same time, it might be hard to tell which one(s) helped, but if its relatively easy to continue them all, then you've got a winning combination!