Updated: Jun 21, 2019
If you have a child with a tic disorder you will know it is very hard to get a diagnosis and continuity of medical care. The medical profession is far behind the science. Your child may be diagnosed as having 'benign childhood tics' and receive no further investigation or may be diagnosed with Tourette's Syndrome and offered drugs. Even in 2019, doctors in the UK aren't even aware of PANDAS, which means your child runs the risk of not being diagnosed properly at all. Even with a diagnosis, specialists and practitioners are failing to look at the contributing root cause factors that exacerbate tics or create a holistic lifestyle treatment plan.
This article gives an overview of what to consider if your child has a tic disorder.
1. Be your (or your child's) own health guru
The first time you notice tics and head off the the GP you are likely to be ignored. As a parent this is the time to start your own investigations and research so you are ready to be an advocate for your child and push for what you believe your child needs - whether it's a referral to a specialist or further testing. It's your responsibility to question and critically analyse what even a neurologist tells you, because many of them are not up to date with the latest research. Your best resource is PubMed which will give you access to journal articles you can always take with you to the doctors but other resources on the internet are invaluable, as is connecting with other families through Facebook forums.
2. What's causing your child's tics?
Your child ticing is evidence that they have neurological excitation and there is (at best) something happening in their body that is not optimal at at worst the neurons in their brain are dying from over being over excited. I encourage my clients not to accept the label of 'benign childhood tics' as I don't believe that neurological issues are at all benign. The body doesn't lie and it's up to you as a parent to push and find out why your child is experiencing tics.
In terms of diagnosis the possibilities are:
PANDAS - Paediatric Autoimmune Neuropsychiatric Disorders Associate with Strep (and also be associated with viruses)
Benign Childhood Tics
However, regardless of the diagnosis, you will need to go through significant trial and error, as well as testing to determine what your child's personal triggers are. The contributing factors that exacerbate your child's tics are likely to be things that are causing inflammation in the body. It will be the perfect storm of multiple factors, the result of an inflammatory bucket that has 'overflowed' - that is, it's not one particular trigger but multiple sources of inflammation that lead to tics.
If PANDAS is suspected, the key source of inflammation is likely to be from Streptococcus (Strep) and it's about working out where that strep is coming from - throat, from gut dysbiosis or another source. There then needs to be a protocol - including either antibiotics or antimicrobials to eliminate the Strep. However, Strep is unlikely to be the only contributing factor.
I encourage my clients to investigate how each of the following may play a role:
Gluten: From PANDAS to Tourette's gluten has been implicated in exacerbating tics. I recommend the Cyrex Gluten Panel. However it is also possible to simply put your child on a strict gluten free diet (even the smallest amount can cause inflammation) and track results. Search PubMed for articles.
Leaky Gut / Gut Dysbiosis: Again - this can be tested for. Leaky gut can cause large particles to enter the blood stream that shouldn't be there, causing an inflammatory response. If you don't want to test, I recommend the whole family do a gut healing protocol such as the GAPS diet to health the gut and slowly reintroduce foods and support with probiotics.
Heavy Metals - I recommend a hair mineral analysis test however using the Andy Cutler Method to interpret results.
Stress: From not enough sleep, to too much on, heat, emotional stress - stress exacerbates tics. I encourage parents to reduce stress and reshuffle lifestyle in the way that best manages tics.
Infection: A virus or bacterial infection (especially if strep) is likely to increase tic frequency.
Nutrient deficiencies: There are many nutrients that are critical for optimal neurological function including vitamin D. A multi may do the job but if your child has severe tics, I recommend a blood test to determine any standout deficiencies.
Other inflammatory triggers: Anything from mould to chemicals or certain foods may be triggering your child - this is where trial and error on a carefully formed protocol or testing are really beneficial.
Testing - do you really need it?
Testing is incredibly expensive and often must be done privately through companies that your GP and specialist are likely to ignore. However, sometimes finding inflammatory triggers is like finding a needle in a haystack. Also - imposing elimination diets or heavy metal chelating on a child has huge social impacts and personal and emotional impacts. For this reason I encourage testing to show up the red flags rather than go through a series of eliminations or treatments that may be futile. I find it far more efficient and effective to do testing.
Here are the tests that I feel are beneficial:
Organic Acids Test: Urine so non-invasive and will give you a snap shot as to whether it's worth doing further blood or stool tests. Will show if metabolites suggest gut dysbiosis, yeast infection, neurotransmitter issues or metabolic issues.
Cunningham Panel: Specifically to test for PANDAS
Cyrex Array 7: Test for autoimmune markers against basal cell ganglia proteins which can indicate PANDAS.
Strep Titers: Chronic and acute - again helps with a PANDAS treatment plan.
Cyrex Gluten Panel
Cyrex Leaky Gut
Cyrex Food sensitivities and environmental trigger panels.
Doctor's Data Hair Mineral Analysis
Nutreval: Nutrient profile (includes organic acid test)
Parents should be seeking information and advice from all resources - from GPs and specialists to nutritionists and naturopaths, together with their own research. It is likely you will need to see numerous people before you find someone who you trust and who can help you pull all the advice, and your own research together and develop a treatment plan.
The treatment plan may include medication - from antibiotics to IV immune suppressants (PANDAS) or may have herbal antimicrobials or use of CBD. However, an effective treatment plan will need to include lifestyle options that reduce multiple triggers and address the root cause of the tics. As a parent you should be considering:
Diet: Typically a variation (based on your own child) of the autoimmune paleo diet - excluding gluten, dairy and any other foods your child has issues with.
Anti-microbials / antibiotics: Depending on what testing shows up if Strep, virus' or yeast are issues these will need to be dealt with.
Gut Healing Protocol
Supplements: Depending on testing and condition but should include probiotics.
Lifestyle: Reducing stresses, getting enough sleep and getting enough exercise.
Drugs: May be required to regulate immune function, eliminate bacteria or control tics but should be carefully considered and used in the context of trying to treat root cause triggers before symptom management.
CBD Oil: Is showing huge potential in reducing tics with minimal side effects. Something parents of all children with tics should be researching - check PubMed.
I specialise in helping parents with kids with tics, navigate the minefield of helping their child. Book a consult if you require further information.