Child AND parent displaying similar symptoms?

[Eatmoregreens]

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.

[MomWithOCDSon]

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!

[Eatmoregreens]

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?

[MomWithOCDSon]

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.

[Eatmoregreens]

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.

[Sirena]

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...

[Eatmoregreens]

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?  

Edited March 6, 2018 by eatmoregreens

[Eatmoregreens]

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?

Edited March 6, 2018 by eatmoregreens