7yr old daughter with complex motor tics :(

[usernamecat]

Hi there,

I'm new here. My daughter is 7 (almost 8) she started developing some weird arm flapping movements along with jumps, this is happening all day and it worries me so much. I realized it could be a tic since the year previous when she was 6, she had an eye blinking tic. Her pediatrician is referring us to a neurologist who stated she may have complex motor tics during their consult. We are currently waiting for the neuro to schedule an appointment. It is so worrisome, I've had constant bouts of crying everyday. I am hoping that she will just grow out of of it or it decreases to only a few a day but will not affect her if she is at school. Currently she is doing virtual school from home due to covid (we are in California) but if these tics remain .... I'm afraid of her emotional and social development if kids tease her. During her zoom meetings she says she suppresses them but after the meetings are done she does a bunch. I tell her that it's ok if she needs to release them during her meeting or anytime she feels the need to and does not have to hold them in. 

Diet wise we have always been gluten free (her younger sister is allergic to wheat, egg, and cashew) and she's always had probiotics in addition to her multi-vitamins. I am going to add magnesium supplements for her. 

If anyone has experience please share! Does complex motor tics usually go away? Currently she does her arm flap and jump with the occasional eye blinking/roll tic. Is this a sign that she has TS? Its all so overwhelming. :(

Thanks for reading, any advice, feedback, or stories would be really appreciated. 

[Sheila]

Hi usernamecat, welcome to the forums. I read your account and really sympathize with what you are going through.

Many of us on this site also had the tears and emotional response you are having. The good news is that many of us also found answers. I can't make any promises but the fact that you have allergies in your family is actually encouraging. Both physicians and patients/families have reported that tics can often be more like an allergy of the nervous system than what we would think of as a neurological "disorder."

We have an article that will give you an overview of the new thinking for tic conditions (not necessarily shared by mainstream medicine- --  though it is good you are seeing a neurologist   )   https://latitudes.org/conditions/what-is-tourette-syndrome/    Don't be concerned that the title is Tourette syndrome, you have said your daughter may have a different diagnosis. The article addresses tic disorders in general. 

Please read it through and see if any of it "clicks"" for you, OK? Also, at the bottom of the article there are several links to reader-friendly articles that you might like. I thnk they would be helpful. 

Try not to despair, there is often help for these cases. The goal is to discover any underlying the imbalances, and to learn what may be triggering the symptoms that your young daughter is experiencing.  Hang in there--all the best, Sheila 

[usernamecat]

Thank you so much Sheila! Your words are very comforting.

I have asked her pediatrician for bloodwork to test for common food and environmental allergens. My question though is if it is indeed an environmental allergen and we cannot avoid it, what should we do? Will her immune system eventually grow out of that allergen and hence the tics will be gone?

I've read through the forums and we are trying epsom salt baths every other day, adding an extra probiotic to her milk, limiting her sugar + processed food intake, and adding some magnesium supplements. We try to limit screen time but it is hard to do that with school being virtual

I'm also taking her to see a pediatric chiropractor today as well. 

Thanks again.

[Sheila]

Hi usernamecat, I know it's so hard to limit screen time these days! Schooling often revolves around it.  

I'm sorry,  I hadn't noticed your question about the environmental allergens. So much depends on the situation. Some sensitivities can improve with time and avoidance. And some allergies may improve with age especially if the immune system is strengthened.  Of course, treatments can also reduce the response. But if someone has a mold allergy, for example, and they continue to live in a moldy home, their symptoms can be expected to be aggravated. The classic approach is "avoidance, avoidance, avoidance."   

By limiting exposures to some allergens and aggravating agents (like scented products), you can often lessen the reaction to those you can't avoid. 

I'm wondering -- what did the pediatric chiropractor find or suggest? Hope you can find time to reply.

 

 

[Mommymom]

@usernamecat I just read your message and I am in the same boat as you. My 8 year old daughter never had tics before.  3 weeks ago she started her first tic with a hhmmm sound which progressed into few vocal and motor tics. She is also doing online school in California. I feel lost and exhausted. How is your daughter doing? Can you share if anything worked in managing tics? I am at loss how little help we get from dr, all I got is wait and see. 

Edited November 27, 2020 by Mommymom
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[usernamecat]

Hi there. I apologize the the extended amount of time it took me to reply and post again. I was in a sort of denial and was trying to avoid dealing with the emotions that came with my daughter’s tics. Here is a run down of our story and what we’ve tried.

• Chiropractor: helped with her posture and overall wellness but did nothing for her tics
• Grapefruit seed extract: 1 drop in water once a day when I noticed her tics were extreme. It appeared to have helped but I’m not 100% sure if it’s the grapefruit or the foods we have eliminated.
• Neurologist: recommended she be put on a medication patch. We did not feel comfortable putting her on meds since the tics themselves do not hurt her physically, emotionally, or socially.
• Sheila’s book, which was very encouraging and full of helpful information.
• Got her a Fitbit sleep tracker to monitor her sleep and see if it correlated with increased tics when she got less sleep.
• Kept a Food Diary
• Food Elimination: this one I feel was the biggest one. We as a family already are gluten free, egg free, cashew free due to my little one’s food allergies. Other foods we eliminated are:
  • Dairy
  • Corn
  • Tomatoes (nightshade)
  • Garlic
  • Cinnamon: we saw a huge spike in tics after thanksgiving when she had pumpkin pie which had cinnamon in it. 

For a few weeks she was doing well, only a few mild arms tics throughout the day but post thanksgiving it spiked back up. 

I feel like her main triggers are Cinnamon, Corn, and possibly Garlic and Tomatoes! I’m unsure about dairy but we’re going to wait until she gets to baseline before reintroducing it.

Currently she’s still ticking moderately possibly because she had some pumpkin pie last week (cinnamon trigger).

 

Plan: 

1. Reintroduce grapefruit seed extract 1 drop once a day.
2. Continue sleep tracking and food diary
3. No dairy, no corn, no tomatoes, no cinnamon, no gluten in her foods. 

The bright side: These tics bother me as a mom more than they seem to bother her, the child. So over all I’m very grateful she’s still a happy and healthy kid. Also virtual school from home has helped with the social and emotional aspect. 

Our hope: We find her trigger and avoid it so she can be tic free or as close to tic free as possible OR she just grows out of it. 

It was really hard at the beginning and I can’t say that it gets better but it does get a bit easier with time.