The story I am about to share with you is a very personal one, since it is about my eldest son’s long journey towards well-being. As a mother who spent years trying to figure out how to help her child, my intention is to help, guide and maybe even inspire other parents who are currently going through a difficult time regarding their child’s health.
Whether it was because the sun was shining too brightly in his eyes, the central vacuum’s noise or the food he ate, my sensitive little soul was frequently reacting to his environment. As a first-time mother, I was often told not to worry so much and accept that he was just a sensitive child.
We went through many difficult days and nights laced with stomach aches, gassiness, acid reflux and sleep deprivation. He was not growing out of any of his symptoms like the doctors had assured me.
When he turned 3, I noticed more and more nervousness and a difficulty concentrating. He had a hard time adjusting to new situations and presented a lot of separation anxiety. His nose twitched and he sometimes complained of a constant urge to urinate. His digestion became more complex with extreme gassiness and bloating. He still complained of tummy aches and had several ear and throat infections.
Realizing that I had to take back control of my son’s health, I began on a quest to find answers; I wanted to get to the root cause. My child deserved to be healthy and happy and I was going to do everything in my power to make that happen.
I began to read everything pertaining to his symptoms and behaviours. I quickly discovered that there was a lot of contradicting information out there. What was true, what was not?
By the age of 8, my son had seen different natural health practitioners who did help with certain issues, but did not succeed in finding the root cause. We did find out he had several food sensitivities, was hypoglycemic, was iron and magnesium deficient and that his liver was having a hard time detoxing.
With all of that information, we changed his diet and gave him supplements, vitamins, homeopathic medicine and herbal remedies. He did get better…for a while. Then over the holidays in 2014, some of his symptoms came back and new ones came up to surface. He became excessively anxious and developed a motor tic. He did not want to be separated from us and developed irrational fears and OCD. He suffered from frequent urination (sometimes every 5 minutes until 1am!) and had become quite aggressive. As a mother, I was discouraged, extremely worried and frustrated. Why was he getting worse and not better?
I still continued on my quest for answers and fell upon PANDAS during one of my late-night researches, which basically had an 8×10 picture of my son beside its description.
PANDAS is a temporary problem caused by inflammation in the basal ganglia of the brain. This inflammation is triggered by an infection, such as Group A beta-hemolytic Strep. The immune system reacts to the Strep infection, and creates antibodies that cross-react with protein components (“antigens”) in the basal ganglia of the brain. This sudden and acute-onset of brain inflammation causes a distinct subset of symptoms that rapidly afflict the child.
PANDAS is a condition that is characterized by sudden and dramatic onset of one or more of the following symptoms:
- Obsessive Compulsive Disorder (OCD)
- Anxiety, separation anxiety and irrational fears
- Tics – motor and/or verbal, choreiform movements of the limbs, “Tourettes”
- Food restriction, nausea/vomiting or eating disorder
- Depression, irritability, aggression
- Intrusive thoughts
- Behavioural regression or deterioration in performance at school
- Urinary frequency or bedwetting
Finally, I had found the answer! My mommy instincts were right all along! I knew in my heart that my son was not ADHD, autistic, OCD nor did he have Tourette’s Syndrome. He had been battling an autoimmune disorder for years!
We made our way to our doctor to get blood work done in order to confirm that he truly had PANDAS. To determine if a child has PANDAS, there are different tests that can be done.
STREP SWAB RAPID TEST AND CULTURE
A throat swab is the easiest and least invasive way to test for strep throat. Even though people can receive false negative strep tests, one should not bypass this simple, in-office test. If the child tests positive, treatment can begin quickly and the correlation between strep and the onset of symptoms can begin to be investigated through blood work.
If your child or a family member tests positive for strep, schedule a follow up strep test two weeks after finishing all antibiotics.
Please be aware that your child’s throat swab might come back negative; like in my son’s case. It is important to get the blood work done regardless of the test results.
Blood work that can test for strep, includes:
- Strep ASO (we did this test)
- Anti-DNase B Titer (we did this test)
Ask the doctor/laboratory to give you a numeric result – not just positive or negative. Anything above the labs normal range should be quantified with a specific numerical value. An active strep infection can give you numbers in the 1,000’s or not. My son was hitting the 500 hundred mark with a negative throat swab test; which is considered to be high.
OTHER BACTERIA & VIRUSES
Even though Strep is the most common trigger for PANDAS, other bacteria and viruses can create the confused immune response.
Below is a list of some examples of the other infectious triggers that have been documented by families and/or providers that one can test for. Please note that this is not fully inclusive and does not dismiss other bacteria and viruses from inciting the autoimmune reaction.
EXAMPLES OF NON-STREP INFECTIOUS TRIGGERS
MYCOPLASMA PNEUMONAIE Mycoplasma Pneumonaie is also known as Walking Pneumonia. Some providers will clinically diagnose Mycoplasma Pneumonia, others may choose to run lab tests.
STAPH INFECTIONS Staph can occur in multiple places in the body. It can occur on the skin, in the nose, and it has even been found in the biopsy results on tonsils post tonsillectomy.
LYME DISEASE The Traditional Western Blot should be done when Lyme is suspected. The Igenex Test is gaining popularity in some circles. The Igenex Lyme test that shows antibodies that MAY be present. Approach Igenex testing with a doctor who looks at this from a comprehensive understanding of the immune system, PANDAS, and not focused only Lyme as the sole cause of illness.
H1N1 During the H1N1 outbreak, many children experienced a subsequent PANDAS exacerbation.
EPSTEIN BARR VIRUS
HERPES SIMPLEX VIRUS
OTHER POSSIBLE TRIGGERS
Once the autoimmune process is in place, other things may worsen or trigger symptoms in PANDAS children. Not every child will react to non-strep triggers. If your child is experiencing a flair of symptoms and no infection is present, the following are some possible suspects.
EXPOSURE TO ILLNESS In PANDAS children, sometimes exposure to an illness can trigger symptoms. Some will compare it to someone with a severe peanut allergy.
ALLERGIES This includes seasonal allergies.
DIET Some families find changing the child’s diet helps. This may include “clean eating”, reduction of fast foods, and eliminating certain foods such as gluten, dairy, etc. Certain testing may help a parent determine if a child has a particular sensitivity to a food.
YEAST OVERGROWTH People taking antibiotics run the chance of also killing off the “good bacteria” in their body. This could result in an overgrowth of yeast or candida. This can occur in multiple places in the body, including the gut. If you suspect yeast overgrowth, discuss this your provider. If they find an overgrowth is present, an anti-fungal may be needed.
I am sharing this personal story with you in hopes to inspire you to take back the power life gave you as a parent for your child’s health, instead of handing it over to someone else.
If I had listened to certain professionals, my son would have been misdiagnosed either with ADHD, Autism or even Tourette. This is why I encourage you to do your own research regarding your child’s symptoms and behaviour. It might not be what it seems.
Living through this experience has inspired me to further immerse myself into holistic health by continuing my studies specializing in digestion and immunity health, so that I can educate and help other families who have children dealing with digestive and behavioural challenges.
There is an explanation for your child’s health challenges and it is usually related to his digestion. I have empowered myself, my family and others with knowledge pertaining to gut health and have seen firsthand how it can help a person regain optimal well-being.
You can create a more balanced lifestyle for your family, as well as learn about natural ways to deal with health issues, real (whole) food nutrition, alternative medicine, decreasing toxins in your home offering a nurturing and safe environment for everyone.
My son’s story didn’t end there. There was a reason why he ended up with PANDAS in the first place, and anyone who knows me well, knows that I had to continue on my quest until I discovered the root cause.
In my next article, I will share with you what I have discovered regarding my son’s health by using a “functional” approach.
We all deserve to live a life full of vitality…including our children!
Julie @JulieCloutier6 Live Your Best Life
Hope your son continues to improve.
Thank you for the kind words. He is getting better 😉
Thank you for sharing this story of love and hope. You are an awesome mom! I feel more informed now as a parent – and as a person. I believe it truly helps when people share their experiences with others – you just never know when it could help someone! <3 xo
I agree…personal stories need to be shared! Thank you for the kind words 🙂
Thank you for sharing you story,it could help another child.Postive thoughts for you son.I shared on FB i think everyone needs to read your story.
Thank you for sharing and for the positive thoughts 😉
Hi, reading this is like reading about my son. For the past year my Mom has been telling me she thinks he has PANDAS or PANS. The more I read about it, the more it’s like a story written about him, I don’t know if I am in denial (probably am) or what but I just keep putting her off and say “ya it sounds just like him, I will look into it”, but I don’t. I honestly don’t even know where to begin with getting him/ us the help he needs. Any information would be great. We are in the Ottawa area.
Hello Kayla, Here is the link: http://pandascanada.wixsite.com/pandascanada/specialists . Best of luck!