Sudden Onset of Severe Complex Motor/Vocal Tics

[Emmars26]

Our 16 year old developed sudden onset motor and then phonic/vocal on 1/18/21.  She said she had 2-3 pre cursors the week before, that felt like a 'ghost shiver' in her words.    

 

I was surprised by the medical communities response to these symptoms (2 separate ER's, neurology).  I had to push for any testing at all (WBC, Strep antibodies, etc).  I also had to find the research in medical journals to validate the tests.  Ruling causes in and out seems important to us.  We have switched our daughter's primary to the doctor her brothers where already seeing.  He is an MD, who integrates Walsh, yeast, mold, etc.  He initially did not think mold, until she asked him a couple of questions related to memory.  Anyways, she is getting tested for mold, the house is getting tested for mold, we are beginning work with a chiro trained in functional neurology.  

 

Possible catalyst of Wellbutrin, systemic issue of mold (home improvement project in basement family area discovered mold, her room is in the basement.  Her tics initially were quite intense, she could hardly communicate.  They improved drastically the first week.  Remained stable for two weeks, my husband then finished another basement project, revealing more mold.  Her tics increased, but not to the initial few days level.  They stayed more intense for about a week, and our starting to improve again.  After we completed gathering the dust and urine to test, we did put high quality hepa filters in her room and family room.  

 

I found Sheila's book on natural treatments about 2 weeks ago.  It matched up with my philosophy on integration and the research I had already worked on.

 

We are waiting for results or her and house mold tests, for our next steps.   

 

Dr also recommended Annie Hopper's DNRS.  Anyone use that?  

[Sheila]

Hi Emmars26, welcome to the forums. I'm glad you seem to have zeroed in on likely some key underlying causes of your daughter's difficult symptoms. I hope you can let us know what testing shows. 

I was not familiar with DNRS for neural retraining https://retrainingthebrain.com/    The testimonials are impressive and it would be good to learn more. I did a search on our forums and didn't see specific reference to it.  It would be interesting to know what your doctor's experience has been with patients referred for DNRS.

We are glad you wrote, and wish you and your family all the best in healing your daughter. 

 

 

[Emmars26]

Thank you Shelia.  

 

Our Dr.  talked about the limbic brains training to respond to trauma (physical, emotional, etc.) being stuck in an unhelpful pattern.   He said that often patients who can't tolerate Walsh protocol or similar TX's need to do limbic retraining first.  I also, since then have seen it mentioned multiple times in Toxic Mold, Dr. Neil Nathan's book.  It seems that for highly sensitive patients the neural connections to mold/lyme/ other physical or emotional traumas are overly intense and slow down TX.  

 

I will keep everyone updated.  It is not specifically for tics, but we are hopeful.  

[Emmars26]

One week into some mold TX and very beginning of DNRS utilization.  Daughter with tics is improving.  So soon to really tell, but we are treating 5 of us for mold symptoms (e.g.  I had extremely itchy eyes and headaches, fatigue).  All are seeing improvements in moods and fatigue levels, except for husband-but he got his 2nd covid vaccine so not feeling great was expected.  

[WorriedMum]

Hi Nurse Mom,

I just saw your message now. My daughter has gotten stuck in tics 3 times. The last was awful she didn’t know who were (she thought we were all spiders). She kicked us all away including her sister in the head. I called the her doctor who wasn’t concerned. How is your daughter now? It is terrifying to watch. 

[Chemar]

10 hours ago, WorriedMum said:

. My daughter has gotten stuck in tics 3 times. The last was awful she didn’t know who were (she thought we were all spiders). She kicked us all away including her sister in the head. I called the her doctor who wasn’t concerned. How is your daughter now? It is terrifying to watch. 

Hi WorriedMum

I am not sure if you have already posted this on another thread, but has your daughter been evaluated for PANS/PANDAS?

From what you wrote above, this is something that PANS/PANDAS kids may experience.

Where Tics/TS can certainly manifest with some very obsessive or even phobic behaviours - still in general tics don't usually have an almost hallucinatory manifestation like you describe, and most people with TS/tics don't generally exhibit violence or aggression when tics are in flare - although yes, sometimes the tics can be self injurious.

[Mommymom]

Hi @NurseMom21

How are you?
I was looking into CBIT therapy and recalled that you are waiting for the same therapy for your daughter. Did your daughter start CBIT? Can you please share your experience?