Nightmare PANDAS/tics newbie - need help/advice

[nitshel]

Hi
I have a 7 year old. Last year in November, he developed some vocal tics. These eventually evolved into coprolalia. He was put on guanfacine, zolofot and risperdal. That improved things and the only thing that remained were some grimaces. In an attempt to eliminate his tics and move away from these powerful drugs, we've tried a whole bunch of alternative treatements and dietary changes.

- put him on a gluten free, dairy free, reduced sugar diet.

- We have him on a bunch of supplements - Ca, Magnesium, Methionine,etc.

- for a while, he was on a very strict, candida free diet and diflucan and probiotics

Given that all of the above did not get rid of his grimaces, our suspicion turned to PANDAS. We spoke to a Pandas specialist and now have him on a dose of antibiotics with a steriod (prednisone). Three days into this treatment, we noticed a significant change in his behavior - a lot of rage and frustration. After about 5 days, we also noticed that his vocal tic had started to come back. Today is the 6th day, we've stopped prednison (after reading online that it is a significant tic triger). His grimaces are much reduced but his vocal tic is back and we are besides ourselves. The nightmare has returned.How long till Prednisone is flushed out of my son's system? And will his tics subside (or are they now at a "new normal")?

 

Has anyone experienced the above before? Are his vocal tics really prednisone or just a herx reaction - is this just a strep die-off?Could his tics be the antibiotics?I've read that TS is usually inherited and there is no neurological conditions that exist in our family - or even the extended family...so if this is TS then it is extremely strange...any thoughts on this?

 

I forgot to add that we did Lyme testing through IGeneX. Here is what we got...

IGenex TES : NEGATIVE

CDC / NYS TEST: NEGATIVE

 

18 KdA --

**23-25 kDa --

28 kDa --

30 kDa --

**31 kDa IND

** 34 kDa --

** 39 kDa IND

**41 kDa ++

45 kDa --

58 kDa +

66 kDa --

** 83-93 kDa --

 

Does this indicate Lyme? Is it possible that his tics are also worse because of die-off (herx) reaction?

 

Your help and advice is much appreciated.

[rowingmom]

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 Western blot. The IND (or indeterminate) notation means that the band is not showing up strongly, but is there. Our LLMD (Lyme Literate Medical Doctor) considers an IND band to be a positive indication of infection.

 

Did you test for the co-infections (bartonella, babesia, ehrlichia, mycoplasma) as well? Igenex runs these too. Just asking because bartonella is a known cause of raging in infected people.

 

The increase in symptoms you see with abx treatment is most likely a die-off reaction. Ticcing and emotional lability are two of my daughter's symptoms which ramp up whenever we change or increase abx protocols. These usually return to a lower baseline after a week or so as her body is able to detox. Just a head's up - steroid use is usually contraindicated with bacterial infection as it supresses the immune system.

 

Please read through the archives, it is a wealth of information.

Edited May 3, 2013 by rowingmom

[Missmom]

What other labs did your pandas specialist run? Did you have any other results show up positive? Strep titers? CBC? Any indications of recent infections? We have never tried steroids but I have also heard that they can increase ticcing. Do you have a doctor willing to prescribe long term abx. It took about two months on abx before things remained stable for my son. I was actually able to stop abx for a couple of months until another infection hit. But with each flair I feel my son needs more than the standard 10 day abx. Treatment. You will figure it out, don't worry, you just need a good doctor on board who is willing to try figure this all out with you.

[airial95]

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. However, steroids can also have a negative reaction in many kids - PANDAS or not - that include hyperactivity, rage, and even psychosis. This is why we never chose to try steroids to treat our kids' PANDAS. I didn't like the risk of the side effects. (Although - with our son's most recent IVIG - we did have to give in and give prednisone to counteract some of the side effects of the treatment...fortunately, there were no ill effects).

 

If it is PANDAS - it may take trial and error to get the right antibiotic. We used Azith first, and while it didn't do much for my son's tics (grimaces as well), within 2 weeks was saw significant improvement on all other symptoms. The only thing that eliminated my son's tics entirely was getting his tonsils/adenoids removed - and then they returned with a subsequent infection. When we tried an Augmentin/Azith/Rifampin antibiotic combo - it eliminated the tics entirely (which by that time had evolved into a full upper body shruggy-thing) and they haven't returned post IVIG.

[nitshel]

Thanks all. We did run titers last Dec but they came back "negative" (no numbers provided) - maybe we should run them again? Also it looks like we might be dealing with "stealth" Lyme (based on some advice posted here). Plus it loks like we need to test for co-infections (bartonella, babesia, ehrlichia, mycoplasma).

 

Doctor did not run any tests - she looked at the past ones we did and then gave us the Abx + Prednisone regimen - am pretty mad at her - she gave us no potential side effects or any warnings....was laid back and disinterested all through the appointment.

We have an emergency follow-up with the Doctor (she came highly recommended - in fact she is mentioned on several threads in these forums) - will post what she says.

 

Over past 24 hours the facial tics are down but vocal tics are back (loud "yelps")- these are so much more disruptive....I hate to do this but we may have to up the Risperdal so he can go to school and play with friends.

 

How does one determine if/when what your kid has is caused by an underlying infection (in which case Abx will help) - or is simply a bad genetic card in the deck (TS) - in which case Abx will simply not work? Is this determination made after trying a number of drugs over an extended period, ruling out all other possibilities? Or is there an easier, more conclusive way of doing this?

 

Thanks once again for all your suggestions! God Bless!

[rowingmom]

If you decide to increase risperdal please do so slowly. Many PANS/PANDAS kids have severe reactions to even normal doses of these types of drugs.

 

In DD11's case we did find a positive bartonella titer and blood work that suggested infection. We never used the ritalin and clonapin that was prescribed when she first started exhibiting increased ADD and ticcing syptoms, so I am not sure how she would have reacted to them.

 

After charting the last two years of DD's treatment (daily on a scale of 1-10 with changes in protocol and other illnesses noted - Excel) I have found increased ticcing, emotional lability and shin pain (a bartonella symptom) to be directly correlated with the initial period after increase/changes in abx/herbal protocols. These then slowly resolve.

 

During the first year or so she would also flare with any newly acquired infection (cold, stomach virus etc.), but no longer reacts in this way. Funny though, if she ever exhibited a fever response (very unusual for her) her symptoms would decrease during the time the fever was active and return shortly after.

 

It has taken a while, but the resolution of DD11's pain/psychiatric symptoms with abx treatment is very obvious to us. I have no doubt that they can be attributed to her infections and her decreased ability to methylate properly.

 

Just as an aside, DD's psychiatric symptoms (ticcing and other PANDAS/PANS symptoms) preceeded her bartonella pain symptoms by about 2 years.

Edited May 3, 2013 by rowingmom

[LNN]

You only posted one set of Igenex results - there should be two - one set for IgM antibodies and one set for IgG antibodies (each set will list the same bands). Can you tell post the results for both sets?

Also, what antibiotic are you using and for how long is the prescription?

 

It's possible you are seeing a herx response but if there's an active infection of any kind, I'd consider tapering off the prednisone (if you've been using for more than a few days, you need to taper off, not stop cold turkey). Tics could be non-infectiion triggered TS but they can also be caused by too many toxins not being able to leave the body quickly enough - a detox problem. Make sure your son is having daily bowl movements, use an anti-inflammatory like motrin (not tylenol, which can deplete glutathione - the master detox agent) and push fluids. Resveratrol, vitamin C, milk thistle - can also be helpful for detox and some use activated charcoal or bentonite clay to bind to the toxins in the bowels to improve excretion.

 

You may also want to reconsider the methionine - not everyone can tolerate this, depending on genetics. It can increase SAMe which is good for the body but it can also add too many methyl donors - again - good for some people, bad for others. Too many methyl donors can make certain people very angry and aggressive.

 

I gather you're seeing Dr L - she's a great Pandas doctor and I respect her a lot. But she does not know how to treat lyme (nor does she generally try). If you decide you want to pursue lyme, post the region of the country you're in and someone may be able to recommend an LLMD.

 

Hang in there - my son has struggled periodically with some very bad tics but he's always found relief and has gone years between episodes. He does not have TS. For him, the tics mean he's having a problem with detox and/or with too much dopamine.

[Hopeny]

Steroids can exacerbate Lyme unfortunately. Based on your results and symptoms, as rowingmom wrote for Band 31 and Band 39, it would make sense to consider consulting an LLMD. Band 31 takes one or two years to appear which would indicate you may be dealing with a late stage of chronic Lyme. Most non LLMD's seeing your results would go by the "CDC negative" diagnosis and move on, while LLMD's would evaluate the symptoms and the Bb specific bands that are indicated. Good luck and sorry this is happening. Regression is really hard to deal with.

[nitshel]

Posting our latest update. Doc L has prescribed the co-infections tests (Bartonella et al). She admistted that giving the steriods was probably "a bad idea" - yeah, no kidding. Tics are very bad now - loud yelps like he had in the begiining of this nightmare, with periods of coprolalia. he has been off the Prednisone since 4 days - yes we did quit Prednisone cold turkey but its a bit late to do anything about that now- right?

We tried giving a slightly higher dose of Risperdal as Doc advised - no effect. We do NOT want to increase dose more of we can help it

 

Doc has now switched son to Augentin 500 mg twice a day (discontinued the Clonidycin and Rifamcin) - she says this should help in the eventuality that it might be LYME. For Lyme she has suggested a doctor in Connecticut. We live in Wash DC area - does anyone know of any LLMDs here? Doc L said she trusts the doctor in Connecticut more thn any others in our area....

 

> If this really is a die-off, how long cn we expect it to last? Its already been a week - should we not expect to see at least some improvement by now?

> Doc also suggested we look at trying Keppra or Topamax to counter the increased tics - and she said these are "safer" than Risperdal. Has anyone tried these drugs?

> Could it be that the Abx are impacting the immune system somehow which in turn is exacerbating the tics (i.e. there is no underlying infectious agent - just body "out of whack" somehow)?

> Doc had advised we try Dr. Cunningham's panel to test whether or not son has TS (testing for antibodies) - have folks found success with Moleculara?

 

Here are the results from Page 1 of the IGenex tests- igm (page 2 - igg is posted in earlier posts)

 

18 KdA --

**23-25 kDa --

28 kDa --

30 kDa --

**31 kDa --

** 34 kDa --

** 39 kDa --

**41 kDa IND

45 kDa --

58 kDa ++

66 kDa --

** 83-93 kDa --

 

Onlt band 41 showed up as IND and band 58 as ++

 

Our NIGHTMARE is back ...and its getting worse by the day.....thoughts and advice appreciated......

[LNN]

So you have IgM 41 IND, 58 ++ and IgG 31IND, 39IND, 41++, 58+ - most LLMDs would look at his symptoms plus these labs and be willing to treat for suspected lyme.

Augmentin is one of the abx used for lyme (so is rifampin - esp for bartonella). But alone, it won't be effective. Lyme bacteria can take three forms - the shape of a spirochete - which is susceptible to extra-cellular abx like augmentin, an L-form which is susceptible to an intracellular abx like azithromycin, and a cyst form, which is impervious to most abx, tho tindamax and flagyl can make a dent in it. In addition, lyme likes to colonize in something called a biofilm - a city of various bacteria and viruses hidden from the immune system in a mucus film - plaque on your teeth is a biofilm. So using one abx will not get the job done. You need to use a combo of abx and rotate them in a game of whack-a-mole.

 

Herxes can last a few days or many weeks. You can either stop the abx for a few days to see if tics lessen or you can search this forum for "detox" and read up on various supplements that can help the body rid itself of the toxins being released by dying bacteria. Or slug through it. I doubt that the abx is making the immune system out of whack. Based on your labs and response to abx, it sounds much more likely that this is a herx of some sort or that the augmentin alone isn't enough and the tics are a response to untreated lyme.

 

We did the Cunningham test on both kids when it was a research study and "only" cost $400. It was helpful at the time and made me feel less crazy. But from a treatment perspective, my LLMD (lyme literate doctor) considered it interesting but didn't change his treatment approach. Now that it's $1000, if you're going to pursue lyme treatment, I'd save that money and put it toward your initial consult with an LLMD. Treating lyme is not cheap! But that's only my opinion. If the test were more affordable, i might feel differently. it's just a lot of money to cough up.

 

Can you post the initial of the doctor in CT? There are three I can think of. I'm guessing it was Dr B, as he's a Pandas doc who sometimes treats lyme. But while some here will disagree with me (maybe strongly), he is not an LLMD and he would not be my first choice for lyme. Dr J and Dr M in CT would be much better choices IMO.

 

There are a few LLMDs closer to you and a few members here will have better input on them. I've read good things about this nurse practioner http://www.gingersavely.com/About-Dr--Savely.html but I don't have any direct experience. BTW - most LLMDs don't take insurance, but like Dr L, they give you the form you need to submit your own claim to your insurance co. In most cases, you'll get at least a portion of your costs covered.

[Hopeny]

A couple of thoughts - I have not used it but some find charcoal can really help with a herx. I do not have doses or brands but maybe someone on this board can help. I have found that using Burbur and Parsley drops from Nutramedix (five drops every four hours, but two hours away from abx) is helpful. I also give baths using Ahava dead sea salts. . My DD recently had a severe herx from an herbal antimicrobial I tried to add and using the Burbur, Parsley and baths seemed to accelerate the recovery.

 

There are good Lyme practicioners in your area, you may want to start a new thread asking for recommendations

 

Good luck.

[nitshel]

Thanks LLM - Yes she mentioned Dr. J in CT as her choice. Many thanks also for the info on Lyme. We have begun using Glutathione cream to help with detox and will investigate the charcoal that Hopeny pointed out. Also ordered Bonnie's TS control to see if they can help based on positive reviews on this Board.

 

Tomorrow I plan to get Blood work done for co-infections and for the MOLECULARA - I'll post results as soon as I have them. Challenge will be going into the lab with son's very loud vocal tics / coprolalia....will get through it.

 

In the meantime the tics are so bad and son's behavior is difficult to deal with - fills us with so much anxiety.....seems like everything is falling apart....I just wish I knew what it was we were dealing with - that is the worst part - after so many months and tests, it still feels like a mystery.

 

Thanks to everyone for their thoughts...

[peglem]

Consider that risperdal can cause facial grimacing (tardive dyskinesia) and it can become permanent. So how will you know if the movements are tics or the side effects of risperdal?

[Broo100]

Hi there, my ds also started, last fall, to display tics, first jaw moving and then vocal tics which got louder and louder. He was diagnosed with strep and put on augmentin. Then his dr ran a full blood panel and discovered a Mycoplasma coinfection. He put him on biaxin. His tics which had decreased tremendously came back with a vengeance during the course of this new antibiotic. I now realize that he must be herxing. Fast forward to today and he is completely tic (and antibiotic) free. But i sure am keeping a close eye on him and love coming to this board to keep updated

[nitshel]

@Peglem - this was a question that we also asked ourselves but we have been told by our Doc that the current dose (1 mg) is too low and unlikely to cause tardive - as far for the fact that risperdal may be the cause of the tics, that's just a chance we're taking at the moment since it seems to help with the vocal tic.

 

All - based on feedback, we've decided that now that is been 9 days of antibiotics and exacerbated tics, we'd like to check if this is herx by stopping ABX and seeing what happens. If the tics decrease then there's a good chance that this was a herx reaction and if not, then we 'll resume the abx regime and figure something else.

 

Any advice on how long after we stop ABX should we see a decrease in the herx reaction?

 

Any thoughts or advice on this plan.

 

In the meantime,we are doing some blood work tomorrow that will hopefully tell us if our son had PANDA related (moleculara)/lime co- infection(labcorp).

 

Thanks to,everyone for their insights and good counsel.