Tics in siblings...need help, advice, thoughts

[Lovemykids]

Hello,

I am new to this forum and apologize if I am posting something that has already received a lot of coverage and/or if I am posting in the wrong section (and for the long post!).

I am looking for help, ideas, insight and reassurance....

My 26 month old son started exhibiting very obvious tics back on New Year's day (about 6 weeks ago).  His tics began with very pronounced eye blinking (which lasted approximately 3 weeks).  About five days after the eye blinking began, he started doing a pronounced head tilt/shoulder shrug which he still displays to varying degrees up to today (5 weeks later).  A few days after the head tilting began, he also began doing a lot of face rubbing and touching and putting his hands in his hair (also still present up to today to varying degrees).  If I am honest with myself, I think he was doing some of these things to a much milder degree back in December, possibly before then but I didn't realize it was potentially tics.  I also wonder if he has a mild vocal tic as he seems to make a bit of a "c" or "kuh" sound at times (and does a little lip smacking (within the last week)).

He is doing well overall otherwise - had a burst of language and other mental development back in December, started at a new daycare in January which seems to be going well....He is affectionate, loving, fun, funny, intelligent, and developing in line with his age.  Not sure if it is relevant, but he has always been pretty intense in displaying his emotions and was 'colicky' from about the second day (yes, day) he was brought home from the hospital. Our pediatrician thinks this is developmental related and nothing serious.  She did say that he is having complex motor tics that may come and go over the years ahead.  She has referred us to a pediatric neurologist and we are waiting to hear back on an appointment.  She also did a throat swab for strep and should have results back in the next couple of days. 

As grateful as I am to hear that our doctor thinks this is nothing serious, I feel that this is stemming from *something* and really want to work towards resolving this from the root and have an appointment booked with a homeopathic/naturopathic doctor (doesn't take place for a couple more weeks).  My son had a variety of illnesses his first year and I wonder how much of that is playing into today's issues (e.g. has it built up toxicity in his system, has some it created some sort of methylation issue, etc.).  I also told our doctor that in December my son seemed like he was not noticing simple things right in front of him or even in his hand and would ask for said object like he had no idea where it was (long term memory seems to be fine).

I have felt pretty worried the last month but have been trying to put those aside and not put much energy into the worries, and to remain optimistic.  To make things more stressful though, today, I noticed my 4.5 year old daughter doing a few random shoulder shrugs which is out of character for her and they were not done around my son so I do not think this is a case of her copying her little brother.  We think she has done a head tilt and also a stiffening of her arm in the last day or two.  

So......what does this all mean?  Anyone have any thoughts?  When it was just my son ticcing I could think of a variety of potential causes but with my daughter also displaying some tics (we think), I feel like I have narrowed down the list to: genetic (TS - though neither side has a history of TS; or MTHFTHR(?) gene defect?); environmental of some kind (we don't use harsh chemical cleaners, could it be dust, mold....if mold or cleaners at school would they still tic at home on weekends and evenings?), less balanced diet (we strive for fruits and veggies with each meal but admittedly eat more processed stuff than we should); food sensitivities (my son is not diagnosed as lactose intolerant but is on lactose free milk, my daughter seems to be allergy free)and vaccines.  (I am not an anti-vaxxer - both of my kids have had all of their shots per the schedule).....but what I keep coming back to is what led up to the tics presenting - one of those things was vaccines.....both of my kids had a flu shot in October and because it was the first time getting the flu shot, they had to get a booster.  They each got the flu booster shot at the start of December and at that appointment they *also* got their scheduled vaccinations (2 yr shots for my son and 4 yr shots for my daughter).  Is it possible that tics would not start until a month (for my son) and two months (for my daughter) *after* getting the shots?  Could toxicity build up but not present for a month or two?

*Could* this be PANDAs in both?  My son had a cold through January and my daughter started coughing last week - neither seem sick enough to have strep but maybe they have the strain?  I can't help but feel like my daughter has been more energetic (hyper?) over the last week or so (hoping I'm not just reading in to things).

Does anyone have any advice or insights on possible causes especially considering both children now seem to be affected?  I was finally feeling calmer about my son but now am feeling sort of in shock seeing my daughter also seemingly displaying some tics.  Does TS typically present amongst *both* siblings and at around the same time (not same age)?

Sorry for such a long post....just trying to give some background in hopes of getting some direction.  I know I have asked a whole lot of questions....if anyone can relate and comment even on pieces of this that relate to their story, I would be grateful.  Thank you in advance for reading!

Edited February 12, 2018 by lovemykids

[Lovemykids]

Anybody?  I was hoping at least for a supportive virtual hug.  

[Chemar]

Hi

So sorry you have not had responses and hope someone with more knowledge may be able to offer advice.

My uneducated suggestion would be to look into PANS if both children are showing similar symptoms.

Here's that (((HUG))) of support, as I know only too well how scary all this can be. I do hope you get answers and effective treatments for both your children.

[NurseMomof4]

Hi,

I read your blog and I am a mom of 4 kids, my 14 you was dx'd with PANDAS a year ago ( I can remember the date).  I am sending you that virtual hug and telling you not to give up hope.  You are a mom, and you will find that inner strength when it comes to fighting for your kids (maybe not so much strength when it comes to fighting for ourselves, but it's a different ball game when it comes to our children).  I am a nurse and I have never been to a naturopath, until this rocked my world.  I kept telling my pediatrician that something was wrong and I believed it to be from the strep and Influenza he was just diagnosed with.  My son was old enough to tell me something was wrong "in my brain" and the sudden changes were WAY out of character for him.  I tried getting into a therapist but the wait was forever.  Against my better judgement the pediatrician wanted to try Zoloft and then increased the dose a few days later.  It was like pouring gasoline on a fire!  My son ended up with Seratonin Syndrome (which I told my peds what it was and we had to get sent into Boston).  I wanted all of the SSRI's out of his system and I wanted answers.  A friend suggested a Naturopath.  I e-mailed him my story, he got us right in and looked at my son and said I am going to help you, and then looked at me and said you need to call MGH tomorrow, I think your son has PANDAS.  He was the first person to figure it out.  He was amazing.......he put him on supplements to detox his liver, neuro calm, tested his food sensitivities, tested his gut (very high yeast), even did acupuncture which I never thought my son would agree to.  He was willing to try anything to feel better.   The naturopath really saved us time and got  him on the right track.   I have been told that siblings are likely to also get PANDAS,  and when the child is exposed to a virus or bacteria, they start "flaring" (showing signs of when they first developed it).  The one thing I have noticed (and my son verbalized on his own) was that Aleve 2 x /d made a big difference in his behavior and how he felt. 

 

I would ask your pediatrician to test both kids for strep (in the blood as well as the throat, nose, rectum).  Strep hides in various places...sinuses/ears, etc.  That has always been my gripe with pediatricians.........these kids test positive, they give them an antibiotic, but no-one ever tests them after the completion to see if it if fully resolved?!  They don't even tell people to change out their childs toothbrush 48 hours after they start the antibiotic so they don't re-infect themselves.  Anyway, Strep may not be the only cause, but I would start there and then get in to see an infectious disease doctor for further more in-depth testing for other causes.  

There is so much more I could say to you, however I really wanted to just tell you that you are on the right path and don't give up!

 

Wishing you better days ahead

[MLee]

This is so helpful!  For the strep test, blood would be a draw and the others a swab? Or how is that done? At the pediatrician's office or at a children's hospital?  Thank you!

 

I would ask your pediatrician to test both kids for strep (in the blood as well as the throat, nose, rectum).  Strep hides in various places...sinuses/ears, etc.  That has always been my gripe with pediatricians.........these kids test positive, they give them an antibiotic, but no-one ever tests them after the completion to see if it if fully resolved?!  They don't even tell people to change out their childs toothbrush 48 hours after they start the antibiotic so they don't re-infect themselves.  Anyway, Strep may not be the only cause, but I would start there and then get in to see an infectious disease doctor for further more in-depth testing for other causes.  

[Lovemykids]

Thanks everyone for your replies....I am very grateful and thank you for the virtual hugs too.

My daughter's symptoms resolved in about a day (knock on wood) but I put a call out to our ped for advice and whether to test for PANDAS/PANS  Our ped thinks it could be related to her being sick but doesn't necessarily think PANDAS.  She is referring my daughter to the neurologist as well to be safe.  My son's swab came back negative and we have to wait for the neurologist to try and move forward with bloodwork (still waiting to find out.when his appointment is).

I am hopeful our appointment with the naturopath can reveal more information that will help us....like really really hoping.  I am tempted to book an appointment for my daughter but will probably wait for my son's first appointment and see how that goes.

Nursemomof4: did your Naturopath do in depth bloodwork and swabs?  How hard and long was the detox?  (I am okay with the idea of a detox if necessary but my son is only 2 and I want to make sure he doesn't miss out on much needed vitamins and minerals to grow strong and healthy while detoxing.....although if a detox is needed he probably is having trouble getting what he needs now as is.) Has your son officially healed / is he in remission?  An infectiois disease doctor sounds like a very intereting route....I wonder what the chances are of even getting a referral like that, though?  I imagine most peds/familydocrors would think pediatric neurologist is the coreect path to follow, not infectious disease.....thoughts? Thank you for sharing your story and words of encouragement!

Edited February 19, 2018 by lovemykids