[Tics are back....probiotics?]

Hi edsonr,

Thanks for checking in...my son had pronounced blinking fot a few days and then it reduced greatly.  I sometimes see the odd pronounced blink but nothing too over the top.  

Around the time his blinking was flaring up, I thought back to fooda he had been eating and/or any changes going on.  There haven't been any major changes (aside from the neurologist's appointment) but I did discover that a common brand of boxed soup he had eaten has corn syrup solids in it (had no idea previously that was an ingredient).  I know high fructose corn syrup is a big no no for leaky gut.....thinking maybe regular corn syrup might be something to avoid too (though I am just guessing).  The only other thing I can think of that he was eating more of that he hadn't had in awhile was clementines.  Not sure if that could have been a trigger for him?

I bought omega 3's but haven't introduced them yet...wanted to wait until things waned and wanted to make sure things have actually settled down.  I am still looking into a probiotic for him.

[Tics are back....probiotics?]

Hi everyone,

I posted on here back in January when my son (2 years old at the time) first began displaying tics - started with pronounced eye blinking, then shortly after included head tilting and face rubbing.  He experienced the tics in a pronounced way for about a month and a half.  (In that time we had a neurologist referral put in by our pediatrician and only got to see the neurologist last week!)

For a few months my son, who is now 2.5, was tic free.  However, in the last week or so we have noticed the odd tic here and there - the odd blink, a random head tilt but nothing major.  Yesterday was more pronounced and obvious - he was doing pronounced and rapid blinking in succession, a head tilt here and there and some face rubbing (I think).  

I have been doing a lot of reading on leaky gut and diet (mainly for my own health issues) and wonder about my son in this regard - he has had multiple rounds of antibiotics in his short life, is on a puffer regularly, etc.  I would like to get him on probiotics and was wondering if anyone has advice on which strains to ensure are included (and/or to avoid)?  Which ones have worked for you?  I am hoping it will help his overall health and that it will diminish / eliminate the tics. My son is on lactose free milk (which he drinks a lot of) though he is ok with cheese and yogurt.  (I know dairy is bad for a potential leaky gut but that is another issue to tackle for a different day.)  I have been reducing his puffer usage as well - not sure if that is a factor at all (thinking it is more diet related or otherwise instead but you never know).

I also want to introduce omega 3's...any advice on high quality varieties?  I asked the neurologist about giving magnesium and he said there is a risk of my son getting too much so advised against it...same with zinc.  

Cognitively he seems fine otherwise (if I weren't looking at him I wouldn't think anything was amiss) and he is meeting all his milestones, is happy, loving, talkative, connected, etc.

Thanks in advance!

[Probiotics]

Hi Caryn,

I know this thread is quite old and I'm not sure if you still visit this site or get notifications but wanted to reach out as i just saw this post and how probiotics helped your son. What really struck me was your description of your son.... everything from multiple rounds of antibiotics to "buddha belly" to creamy coloured poop - it sounds so similar to my son.  How is your son doing now?  Are you still giving probiotics and how are his tics?  I was also hoping for some advice from someone (either yourself.or anyone else reading this!) who has "been there".  I tried to view the other two threads you noted earlier in the thread but those links are broken so was unable to get your whole story.

I was looking up probiotic use as a means to reduce or eliminate tics and found your thread.  My 2.5 year old son began displaying tics about 5 months ago and lasted about 1.5 months.  He was tic free for a few months but in the last week he was showing the odd tic here and there for the first time (in a few months); yesterday he started doing some pronounced, rapid eye blinking again....and now my worries are coming back and I am determined to try and figure this out.  I want to start him on probiotics but am not sure where to start and which strains to look for.  Any advice? I found a few old threads that say probiotics can actually make things worse so that has given me a bit of pause.  I give him lactose free milk as I think he is sensitive to cow's milk though he seems ok with cheese and yogurt.  I would love to scale back his diet but am trying to figure out how to do that with a 2 year old when I can't reaaon with him that it will help him feel better (hopefully).  

The day before his tics came back we happened to have a neurologist appointment and I asked about supplementing with magnesium and zinc and he said that there is a risk of my son getting too high a magnesium level so advised against it (same with zinc). 

I will likely cross-post in case tgis thread is too old....hoping for some advice!

[For the adults with PANDAS /PANS....]

Thanks!  I didn't know you could do your own swabbing!! Do you know where I could look into that?  My doctor only did a throat swab even though I have heard it is better to swab pretty much everywhere.  How long after an illness would results potentially still come back positive?

[For the adults with PANDAS /PANS....]

Hi bobh,

My swab came back negative.  I did not ask for blood tests, but if I end up going to a Functional MD (which I am considering), I will ask them to run the bloodwork.

Thanks for asking!

[For the adults with PANDAS /PANS....]

How did you get diagnosed?....how did you get your doctor to listen and take you seriously (especially since it is labelled "pediatric")?

What made you think you had PANDAS / PANS vs. something else - e.g. did your child have it?

When I asked my doctor to swab me for strep and I briefly told her why, she said in all the years she has practiced medicine she has never heard of strep presenting this way.  I'll give her credit in that she actually did end up doing the swab but if it comes back negative I am pretty sure she won't run the blood tests.

 

[Child AND parent displaying similar symptoms?]

I also asked this in another thread I started on Lyme tests....has anyone done muscle testing to see if Lyme and/or coinfection (or PANDAS / PANS) are present?  If so, how accurate was the muscle testing...was it worth it to try?  Do antibodies have to be present for muscle testing results to be accurate?

[Child AND parent displaying similar symptoms?]

9 hours ago, Sirena said:

Also get Horowitz lyme book..and yes lyme & co can run through families—right now my Dh, ds and dd are all dealing with it and DS has pans. The sooner you get on it the better.  Look for another land or convey seriousness and pans symptoms to land and ask to be put on the cancellation list to get in sooner. Stomach and swallowing issues sometimes occur with anaplasmosis...

Thanks Sirena.  Will do.

Intereting that it can run through families....I totally thought it had to be each person had to be bit by a tick.

It sounds like anaplasmosis is most obvious shortly after a tick bite....my daughter's bullseye rash first appeared last August....not sure it's that but something to consider.  

My daughter has also been clearing her throat a lot like she is trying to clear phlegm.  I know this could just be regular cough/cold related but thought it was also a sign of Lyme?  

[Lyme tests?]

Has anyone tried muscle testing as a preliminary way of trying to see if you have Lyme or coinfection (or PANDAS /PANS)  If so, were the muscle test results accurate?  Does it matter what the antibody levels are like in a blood test or would you still test weak if you have it regardless of fhe antibodies?

[Lyme tests?]

So I spoke with Igenex yesterday afternoon and they recommended the Lyme Immuno Blot Panel 3 - they said it is replacing the Western Blot test and is 90% accurate.  For co-infections they suggested Co-infection Panel #3 and said it is rare for the results to be innacurate.  Does anyone have any thoughts and/or experience with these tests and your results?  After speaking with them I went back to their website and it looked like a different test altogether should be run first (ELISA?)..does anyone know anything about that?

Sirena: Any tips on tests to take through Medical Diagnostics Laboratory and their relative accuracy?

In terms of timing and if now is a 'good' time to test....my daughter had the bullseye rash first appear last August; lasted less than a day, and again in....I think....January?  Also only appeared a short time.  Her cough/could came on about a month ago and mine about 3 weeks ago (odd symptoms asdociated with it came on about 2.5 weeks ago).  

If she (and we) have mycoplasma pneumoniae (which we seem.to have a lot of the symptoms for) does it make any sense to pursue Lyme testing?

[Lyme tests?]

Thanks msimon.  I was hoping to go the LLMD route first but the one I spoke to this morning said that they are booked until end of June and that I should try and get bloodwork ahead of time and gave me Igenex's website.  (The other referrals are for practitioners out of town or require a confirmed diagnosis of Lyme in order to get an appointment.  I don't mind going out of town if necessary but without more 'evidence' I was hoping to try local first, if possible.)

To be honest, I don't recall having a tick bite.....my daughter had the bullseye rash (aopeared twice) and she and I are both experiencing some similar symptoms (I posted a separate thread on this).  I checked the Lyme Disease symptoms list and can identify with at least a third of them (not sure if that is relatively high or low), so figured it would be good to get tested and try and rule in or out LD or other tick-borne illnesses.

[Lyme tests?]

Hi all,

I've posted a couple of threads recently related to PANDAS/PANS and Lyme.  I called a Lyme Literate doctor this morning and they are booked up for a few months and suggested I get Lyme screening through the US (Igenex) while I wait for an appointment.  I checked Igenex's website and there are a variety of tests so not sure where to start.  My daughter had a bullseye rash last summer that went away the same day; I saw it reappear briefly a few months ago and it disappeared as quickly - not sure if we should test for "tick-borne illness" vs Lyme specifically (especially if we both have some symptoms)?

Does anyone have suggestions for which test(s) to have done?  I have reached out to Igenex Customer Service and am waiting to hear back....trying to get some info quickly as I have a doctor's appointment tomorrow and would like to be able to review and request tests with my doctor.  (I don't think my GP is Lyme literate.)

Thanks!

[Child AND parent displaying similar symptoms?]

6 hours ago, MomWithOCDSon said:

You might get more specific answers to the "myco p" testing question if you drop it into the search box on the forum; I'm quite certain it's been discussed before.  I think a standard immune panel (IgG and IgA) has some indicators, but as strep was our culprit, I'm not wholly familiar with the other culprits.  As for the strep swab coming back negative, I would warn you that, in asymptomatic cases at least, they nearly always do.  But going back to the immune panel (blood testing), you'll want to request testing for strep titers (antibodies) also via an ASO and anti-d-nase-b tests; one tests more recent strep exposure, and the other tests for exposure further back in time.

As for finding a PANDAS/PANS-savvy doctor in your area, I saw your other post to that effect; hopefully, you'll get some responses.  You might also check the Pinned Threads at the top of this forum for the topic "Doctors Who've Helped Us."  Members have posted doctors' names from all over there during their journeys.  There are also a couple of PANDAS/PANs doctors here in the States who will do telephone and/or Skype consults, though I don't believe these are covered under any insurance plans:  Dr. Triffiletti and Dr. Kovacevich.

OTC inflammatories such as ibuprofen (Advil) have been helpful to a lot of families.  Others use anti-inflammatory supplements such as Omega 3's, curcumin and turmeric, and/or try anti-inflammatory diets (usually light on wheat, gluten, dairy and sugar).  All that said, though, at this stage of your process, while these might assist in tamping down some of the emotional/mental imbalances you're experiencing, they'll be most effective in conjunction with some medical intervention, whether that turns out to be antibiotics or steroids or IVIG or whatever, ultimately, your care provider and you determine is the best way forward.

I believe you're in Canada, correct?  I'm not sure how your medical systems and ERs respond to PANDAS/PANs, but here in the states, I would be very wary of taking my kid to an ER seeking testing or treatment for this condition as it is not yet listed in the diagnostic manuals and many doctors and hospitals therefore decide that it is a fabrication of hysterical parents who don't want to accept that their kid has some mental illness.  There's frequently a quick leap to psychiatric medications and sometimes even questioning as to the fitness of a parent who's seeking medical, rather than psychiatric, interventions.  It's horrid.

Unfortunately, some neurologists respond similarly, so I would do what I could to network with other families in your area in order to find the caregivers that are more likely, rather than less, to hear you out without pre-judgment on this topic.

Another suggestion I have is that you might purchase a copy (or two) of "Saving Sammy" by Beth Maloney; it has a wealth of information in it for parents, and I was successful in convincing our skeptical pediatrician to give my DS an antibiotic trial on the basis of her history with my DS combined with Sammy's story.  If you have a good relationship with your ped, it's worth a try, I believe.

Thank you so very much for all of the information you provided.  I am very grateful for all of your time and efforts.  I will look into everything you suggested.  

I have a doctor's appointment booked for myself tomorrow.....I am really hoping she will run some tests and do more in depth screening.

[Child AND parent displaying similar symptoms?]

14 minutes ago, MomWithOCDSon said:

My thought is that it's entirely possible that you and your DD are experiencing similar symptoms via an auto-immune dysfunction; you're related, you have similar immune systems, and you have likely been exposed to similar microbes that may have inspired the reactions.

Yes, strep can bring on mental/emotional effects, even in those cases in which the strep infection doesn't inspire a classic physical response (sore throat, fever, etc.).  Many people (my DS included, and myself, when I was a kid) are classically asymptomatic for strep, with behavioral symptoms frequently serving as the only clue as to strep exposure and a heavy immune response going on.

Your persistent/nagging coughs make me think of mycoplasma pneumonia (myco p or "walking pneumonia), a fairly common bug that is a known antagonist for PANDAS/PANS response.

You might try some OTC anti-inflammatories and see if those yield some positive results for either/both of you, and if you have access to a PANDAS/PANs-savvy doctor, I would move forward with getting a professional involved, as well.  Especially with kids, the sooner it is addressed, generally speaking, the more effective the interventions.

All the best to you!

Thank you!!!

I have heard of mycoplasma 'stuff' but not in relation to pneumomia.  How would I get us tested for that?  What OTC inflammatories would I try? 

Our ped is familiar with PANDAS but hasn't seen a case officially. My son was swabbed for strep but it came back negative and our ped thinks it is unlikely our daughter has PANDAS (prob for that same reason).  I like our ped a lot but would feel better if she tested my daughter too.  She has referred us to a pediatric neurologist and we are waiting on an appointment date....I believe it won't be for at least a couple of months and I am scared that we have to wait that long and whether that could affect things more.

Any tips for finding a PANDAS savvy doctor?  Any tips for waiting on the neurologist vs. Something like taking her to emerg and insisting on tests?

[Child AND parent displaying similar symptoms?]

Is it possible for both your child and yourself to have Lyme Disease or some sort of PANDAS/PANS?  (I know PANDAS/PANS is pediatric in nature, but I have explained more about our symptoms below.)

Three weeks ago my 4.5 year old daughter came down with a cough and cold, nothing over the top.  A couple days later I saw her display a couple of shoulder shrug tics, and at least one of those times she seemed to be sort of vacant or zoned out.  Within a day she was back to her normal self.  A week later I saw her do a couple more tics but she was “normal” otherwise.  In the last couple of weeks since then, my daughter has not displayed tics (until today), but she has said some odd things, been overly emotional and a bit hyper at times.   I have wondered if she possibly has PANDAS or PANS based on moodiness and just that she seems ‘different’ for a day or so following a tic episode.  All this time, my focus has been on my daughter and what has brought on the tic..however, in the last week, I too, have come down with some very strange symptoms, which I think may be similar to some that my daughter has had. 

I have come down with a regular cough/cold too, but it has brought on some other symptoms that I haven’t ever experienced before.  I have had a very sore stomach and feel nauseous a lot and appetite is diminished.  When I do try and eat, with some foods, I have had very strong anxiety and sort of feel like I am having a panic attack come on which I have *never* had happen – my breathing gets shallow, my head almost dizzy, and my arms have physical tension in them.  I also think I have experienced a few random muscle twitches (tics?), mainly when I am tired.  It has been a very unsettling feeling to say the least.  Normally I wouldn’t have connected our illnesses, but my daughter has mentioned a few times in the last week or two that her stomach is sore and I wonder if our stomach problems and subsequent mental effects are related and/or similar….something just feels a bit off in both of us.  As I said, one of her tic episodes she seemed sort of out of it.

Has anybody heard of both the child and parent having similar symptoms (including tics, mental effects from a cough/cold) and if so, what was it?  I have found a number of things this could be but I’m not sure what to think or what tests to ask for: 

Lyme Disease?  My daughter had a bullseye rash appear last summer; doctor said it was a spider bite.  Saw the bulls eye rash briefly a few months back but went away quickly.  But could I have it too somehow??  What tests would I even ask for??

Parasites?  Would parasites cause a mental or emotional effect?  What tests should I ask be run on us? 

PANDAS/PANS (is there an adult version of this)?  Will test results still yield anything if not done for another couple of months (when we are likely to see the neurologist)?

Can strep and/or staph infections bring on mental or emotional effects?

H. Pylori?  (I had it years ago and don’t remember having mental/emotional effects.)

Vitamin or mineral deficiency on both of our parts? 

Mold?  Candida?

 

Please help with any advice, thoughts, ideas!  Trying to figure out where to start and how to get my doctor to do testing and/or referrals to get to the bottom of this.