My 5 year Old daughter has Tics

[fgter]

Hi,

• Back in Dec 2023, during the christmas break my daughter experienced her first tics, where she used to hit her chest with her hand gently and throat clearing. We did'nt know what was happening and when approached the pediatrician, he suggested us to go to the ER. The ER ruled out that it was not life threatening and discharged. The tics were intense and then mild for the next week and we finally got an appointment with neurologist. She confirmed it was tics and didnt provide us anymore guidance rather than saying that they're mild and come back to her if the tics become intense.
• The pre-k opened after the vacation and surprisingly the mild tics completely disappeared until MAY 2024, end of pre k and beginning of summer vacation. 1 Week into the summer vacation and the tics are back again, this time a bit more intense and a different tic with head. In both episodes the common thing have noticed is this happening during HOLIDAYS.
• We joined her in a summer camp and this time the tics didnt go away but have fluctuated. She developed new tics, blinking/shoulder shrugging/neck shaking/abdominal tensing
• Myself and my wife, we're lost and dont know where to start or whom to contact. Would really appreciate if someone could shed some light on what the next steps I should start looking into?

[evemac]

Hi There!
This is very common with TS - the symptoms will wax and wane and the tics will change.  

It cannot be so overwhelming at the beginning and how to know where to start, but this is a great place with many parents and guardians who have done many, many things to help their children, so welcome.

My wonderful and amazing son Harrison started having symptoms at about the same age as your daughter.  Our pediatrician said not to worry about these "flicking" movements he was doing with his hands, but I am a Special Education Teacher, and I knew something was off.  Sure enough, the pediatric neurologist said that it was probably Tourettes.

Now, Harrison at the age of 20 and a half,  is virtually symptom free now with some tics now and then that only I recognize as tics.  But he went through a very difficult time with his tics through childhood and adolescence.  Here are many of the things we did:

1.  Made an appointment with a neurologist to get a Dx. We did do medications through 7th/8th grade.

2.  We had a private OT evaluation completed and he received support once a week to help with sensory processing, etc. I thought this was really invaluable, and it taught me things to do for him at home;

3.  Neurofeedback;

4. Chiropractor; 

5.  Went to a specialized MD/Homepathic Dr who conducted very intensive blood work to see what food Harrison was sensitive to, what vitamins he needed, etc.  This was very valuable. Magnesium still works to regulate his body, especially Epsom salt baths;

6. No gluten - huge trigger. Not so much anymore.

7.  Knew that they would be worse when he was exposed to chemicals (chlorine), when he was getting sick, if he was anxious or excited, traveling, etc.

8.  I'd also look into ECE (Early Childhood Education) in your state to see if your daughter will need some support at school.  We had a 504 for Harrison in high school (he is not using it right now in college), to make sure teachers understood what TS and what it can look like in the classroom.

9. Continue to find support with other parents and don't give up; keep researching and educating yourself.

Above all, surround your daughter with people who will love and support her, and find her areas of strength where she can excel. Harrison is a great student in math and science, and he was a strong athlete growing up. He still loves team sports!

Hope this is helpful! Know you are not alone.

Eve McFarland

Boulder, Colorado

[fgter]

Hi Eve,

Cant thank you enough for the valuable information you have provided here. Really sorry to know that your son had to go through that phase.

Below are some more questions in red from my side and am sorry the list is long.

1.  Made an appointment with a neurologist to get a Dx. We did do medications through 7th/8th grade.

Her tics are looking mild now and the neurologist said we can think about medication if it gets intense. Do you think adding mild medication now would help her as a starting point?

2.  We had a private OT evaluation completed and he received support once a week to help with sensory processing, etc. I thought this was really invaluable, and it taught me things to do for him at home;

Neurologist suggested us to start the below. 

1) CBT - Cognitive behaviour therapy

She suggested CBT as my kid has some anxiety issues (ex : she's scared & sensitive to sounds ). Neurologist wants her to be evaluated for ADHD/OCD

Is OT the same as CBT?

2) CBIT - Cognitive behaviour intervention therapy

(therapists said she's too young to start this and may we can look into this when she's 8-9)

3.  Neurofeedback;

4. Chiropractor; 

5.  Went to a specialized MD/Homepathic Dr who conducted very intensive blood work to see what food Harrison was sensitive to, what vitamins he needed, etc.  This was very valuable. Magnesium still works to regulate his body, especially Epsom salt baths;

Can you guide us on whom to contact for testing her deficiencies or sensitivities? Should it be a homeopathic dr or any specialized md?  Will the person from functional medicine be right for this? https://www.ifm.org/functional-medicine/

Havent tried using mg yet? Can we try mg + epsom salt baths in the same day as they're both related to mg?

6. No gluten - huge trigger. Not so much anymore.

I keep hearing this a lot from others. Did you find this through celiac and gluten sensitivity?

7.  Knew that they would be worse when he was exposed to chemicals (chlorine), when he was getting sick, if he was anxious or excited, traveling, etc.

From what I can see, her tics would get worse when she meets her friends or plays at park. She get too excited, not sure if this is because of ADHD

8.  I'd also look into ECE (Early Childhood Education) in your state to see if your daughter will need some support at school.  We had a 504 for Harrison in high school (he is not using it right now in college), to make sure teachers understood what TS and what it can look like in the classroom.

She will be starting her kindergarten from tomorrow and will see how she adjusts to the new environment

9. Continue to find support with other parents and don't give up; keep researching and educating yourself.

Thanks again for all your help.

[Atex]

fgtr, Your pediatrician and neurologist sounds about as helpful as ours when our daughter around 5yr old.  We had the same waxing and waning as well, and sensitivity to sound.

Sometimes the anguish a parent feels for a tic is worse than the tic itself, but in general, I think that working with a knowledgeable Naturopath, Allergist, and Indoor Air Quality specialist can provide some of the most useful information to identify what is putting the child over the threshold.  

Note, a bad allergist can be very misleading so you do need to do homework.

Start thinking about things that might be triggering allergy (immune) response: pet dander, mold, pollen.  Start thinking about chemical/VOC triggers: paints, febreeze, garage chemicals, lawn chemicals, etc.

Also note, the diet that seems completely normal for the vast majority of kids is incredibly inflammatory and is not tolerable for TS kids.  High sugar drinks and candies with food dyes, processed everything; given not only by the school lunches but directly from the teachers, is begging for tics for a child with TS.

BTW, our daughter is now completely tic free at age 11 (1 year and counting) so we must have done something right.

 

Edited August 12 by Atex

[fgter]

25 minutes ago, Atex said:

fgtr, Your pediatrician and neurologist sounds about as helpful as ours when our daughter around 5yr old.  We had the same waxing and waning as well, and sensitivity to sound.

Sometimes the anguish a parent feels for a tic is worse than the tic itself, but in general, I think that working with a knowledgeable Naturopath, Allergist, and Indoor Air Quality specialist can provide some of the most useful information to identify what is putting the child over the threshold.  

Note, a bad allergist can be very misleading so you do need to do homework.

Start thinking about things that might be triggering allergy (immune) response: pet dander, mold, pollen.  Start thinking about chemical/VOC triggers: paints, febreeze, garage chemicals, lawn chemicals, etc.

Also note, the diet that seems completely normal for the vast majority of kids is incredibly inflammatory and is not tolerable for TS kids.  High sugar drinks and candies with food dyes, processed everything; given not only by the school lunches but directly from the teachers, is begging for tics for a child with TS.

BTW, our daughter is now completely tic free at age 11 (1 year and counting) so we must have done something right.

 

Hi Atex,

Thanks for your valuable information and guidance.

I'm surprised as to why pediatricians and neurologists are so HOPELESS when it comes to tics and TS. All they could say was, "ignore the tics"

We just started our journey and guidance from people like you and eve is giving me more strength to move forward.

Nice to know that your daughter is finally free from this

Edited August 12 by fgter

[Atex]

I have thought about this as well, and best I can deduce, its because TS is complicated with the body's system being affected by multiple triggers, which differ from one person to another; which make it harder to study, and when mainstream docs don't have mainstream studies, they stay away.

It kinda reminds me of how the medical profession wouldn't believe that lyme disease existed for decades

[fgter]

26 minutes ago, Atex said:

I have thought about this as well, and best I can deduce, its because TS is complicated with the body's system being affected by multiple triggers, which differ from one person to another; which make it harder to study, and when mainstream docs don't have mainstream studies, they stay away.

It kinda reminds me of how the medical profession wouldn't believe that lyme disease existed for decades

Wanted to ask, what was your approach to your kid sensitivity to sound? does that come under ADHD?

[Atex]

In our case, the sensitivity appeared to be amplified by an inflamed system.  So once we figured out her triggers, the sound sensitivity went way down along with the tics.

Note, excessive startle reflex (hyperekplexia) as well as misophonia can be tied to volume sensitivity.

 

[Chemar]

Welcome to the forum @fgter

You have already received some very good info above.

I would just add that it is important to remember that people who tic are as varied as the tics! so  what works for one doesn't always do so for another, as it is very much dependent on what is causing the tics, along with the unique system of the individual. Keeping a journal to help you record the waxing and waning of the tics, and then learning what may be the triggers, is one of the most important things!

I am going to link an older thread that has some general useful info that may be helpful to you

Also do be sure to consider one or more of the excellent books by our admin Sheila Rogers. They are such valuable resources to help you navigate this journey.

https://latitudes.org/store/

[fgter]

On 8/12/2024 at 11:08 AM, Atex said:

In our case, the sensitivity appeared to be amplified by an inflamed system.  So once we figured out her triggers, the sound sensitivity went way down along with the tics.

Note, excessive startle reflex (hyperekplexia) as well as misophonia can be tied to volume sensitivity.

 

Thanks for the information Atex.

[fgter]

20 hours ago, Chemar said:

Welcome to the forum @fgter

You have already received some very good info above.

I would just add that it is important to remember that people who tic are as varied as the tics! so  what works for one doesn't always do so for another, as it is very much dependent on what is causing the tics, along with the unique system of the individual. Keeping a journal to help you record the waxing and waning of the tics, and then learning what may be the triggers, is one of the most important things!

I am going to link an older thread that has some general useful info that may be helpful to you

Also do be sure to consider one or more of the excellent books by our admin Sheila Rogers. They are such valuable resources to help you navigate this journey.

https://latitudes.org/store/

Hi Chemar,

Understood. We have already started maintaining a journal.

Thanks for the info as well. Glad I found this forum, appreciate all the help am getting here.

[fgter]

Update : 11/19/2024

Hi Everyone,

• We started working with Dr.Piper Gibson on my daughter tics issue. She had her bloodwork/genetics tests done and looks like my kid has heavy amount of mycotoxins in her body, which probably came from mold in the house and mold from grains.
• My kid is also sensitive to many foods and she is intolerant to dairy/gluten/sugar
• Dr Piper suggested a 6 months protocol for us during which we have to go for a dairy free/grain free/gluten free diet
• She suggested supplements to flush out the toxins from her body and fix the leaky gut.
• The journey just started, will keep updating on how it is going, thanks for all your support

[tiaratoledo]

Hi Atex,

I’m facing a similar situation with my almost 5yo son. We are also at the beginning of the journey, trying to understand more about this condition, triggers and natural treatments. 

We had a neurologist appointment today and it was disappointing to say the least. He basically said there is nothing to do unless I want to put him on meds.

This forum has been very important for me as well.

I hope the 6 months protocol can help your daughter and that soon your new update will be that she is totally tic free 🙌🏻

Tiara 

[fgter]

On 11/19/2024 at 8:02 PM, tiaratoledo said:

Hi Atex,

I’m facing a similar situation with my almost 5yo son. We are also at the beginning of the journey, trying to understand more about this condition, triggers and natural treatments. 

We had a neurologist appointment today and it was disappointing to say the least. He basically said there is nothing to do unless I want to put him on meds.

This forum has been very important for me as well.

I hope the 6 months protocol can help your daughter and that soon your new update will be that she is totally tic free 🙌🏻

Tiara 

Hi Tiara,

Have just read your posts on your son's situation and I can clearly understand what you're going through. There is definitely something going under the hood for your son and once you find the root cause, this will all go away. Pediatricians/Neurologists are HOPELESS and I would suggest you read Sheila Demare's books on Tics/Tourettes as the starting point, that would give you all the strength you need to get started. Diet is the biggest trigger for my kid and there is a lot of improvement once we got rid of dairy/gluten/sugar.Food intolerance and allergies can cause triggers too. Functional Medicine/Environmental Medicine are the one's you can start talking to who can diagnose your son and let you know the root cause. Stay strong and you WILL see light at the end of the tunnel