Whether PANDAS flares strike overnight or take a few days to make their presence known, it’s easy to panic when we don’t know how long the recurring symptoms will last, whether new symptoms will surface, or even what triggered this relapse. Often times dwelling on the unknowns escalates an already stressful situation, while focusing on what we do know allows us to cope just a little bit better.
Unfortunately, we do not have a silver bullet that reverses PANDAS flares. I wish we did. Until that time comes, here are 10 ideas that may help you keep your wits about you. And who knows? Maybe you’ll find that your child’s next flare isn’t quite as bad as the last.
1. Listen to your gut. Let’s face it, our gut – or sixth sense – is always right, and when we don’t listen to what it says the outcome usually isn’t pretty. Your gut knows when your child is flaring, even when you don’t want to admit it, or atypical behaviors don’t seem to be indicative of a flare. Also, your child’s flare symptoms may not be the same every time, forcing you to once again become a medical sleuth. I state what might seem obvious because I missed all the signs at the beginning of Aidan’s last flare for the first two weeks. That said, from my own experience, I can honestly say that if your child’s behaviors take a change for the worse that cannot be explained by hunger, lack of sleep or apparent illness, then my money would be on a PANS flare.
2. Ask other family members. Spouses and siblings can often help you figure out if your child is flaring when you are not completely sure. As I write this post, I’m wondering if Aidan’s shift in behaviors just this week are because of a flare. So, I asked my daughter what she thought. Granted, her response was, ‘I don’t know what’s a flare and what’s behavior. I just know he’s getting on my nerves.’ I followed with, ‘Has he been like this all summer, or more so just this week.’ Mystery solved: ‘Just this week,’ she replied.
Note to self: begin the below flare combat regime in the morning. I too will remind myself that this is only a flare, not an acute onset followed by months or years of searching for answers. This is only a flare.
That said, here are some ideas to help us all lessen the duration and intensity of our children’s flares.
3. Remind yourself that this flare is temporary. First and foremost, please remember that flares do not last forever. They are temporary – maybe not as temporary as we wish, but limited in time nonetheless. The more we remind ourselves of this, the more we come to believe that this too shall pass.
4. Reduce activity and demands to allow for rest and healing. The body heals from every illness and injury during times of rest. PANS flares are no different. Explain to your child why ‘down days’, as I call them, are in order. ‘Down days’ for my son equate to laying on the couch watching videos on the TV, phone or iPad. I don’t discriminate during flares – electronics are my ally until Aidan is feeling better.
5. Clean up your child’s diet. Many parents of a PANS or PANDAS child pay keen attention to what foods constitute a healthy diet and eliminate those that cause inflammation and trigger illness. I am one of those food patrols, but even I have a tendency to loosen the reins when Aidan is flare-free for an extended period of time. However, when a flare strikes it’s time to indulge the diet with foods that encourage healing and eliminate inflammation. I immediately turn to dark fruit (with a dash of spinach and avacado) smoothies and give ‘Ninja Warrior’ a PANS momma meaning.
6. Keep your anti-flare arsenal stocked. Antibiotics, ibuprofen, antihistamines, anti-inflammatory supplements, steroid bursts, epsom salt baths, essential oils, lymphatic massages, spinal adjustments, core synchronism, cranialsacral therapy, homeopathy, naturopathy and osteopathy are all healing modalities that are worth considering when your child is flaring. Honestly, I approach a flare with the attitude that anything and everything is a viable option. After all, the combination of treatments used before may not be the right combination that works the next time or the time after that. I encourage parents to seek out information about possible flare treatments in between the flares – when you have the time to think, research, and make phone calls.
7. Explain to your child what is happening. A few minutes before I asked my daughter about Aidan’s behavior this week, I asked Aidan, ‘Are you flaring, or is this behavior?’ Although his ‘I have no idea,’ response was not helpful, it did prompt me to interrogate his sister, whose response helped me crack the code. After you solve the puzzle, don’t be afraid to talk to your child about what may have caused the flare. Maybe your child was exposed to an infection but is not showing signs of illness. Maybe the chlorine from the pool won out this week. The sky is the limit when it comes to discerning flare ammunition, and even though a throat culture or blood test may not reveal the trigger, I believe we owe our kids an honest conversation about why they are feeling so crappy for no apparent reason.
8. Swab the throat and, well, other orifices too. If your child’s trigger for flares is strep, then by all means rush to the doctor. Throat swab. Anal swap. Skin check. Eye check. The whole kit and caboodle. Strep manifests in places you wouldn’t imaging. Hopefully, you have a PANS / PANDAS friendly pediatrician who will understand your heightened sensitivity to strep and work with you. Pediatricians who are in the know about PANS and PANDAS agree with the need for prolonged antibiotic prescriptions and understand that what works for one child does not work for another. So much of our children’s treatment is trial and error, and connecting with doctors who appreciate these nuances is key.
9. Talk to your OTHER children about what is happening. Flares are hard on the entire family. Nobody knows how long they will last, and everyone remembers the long road already traveled. Sometimes siblings fall into a depressed state just thinking about the possibility that this flare will take the family back to square one. I know that Aidan’s PANS journey has especially affected my daughter. Yet, let us not forget that she was the one who helped me correctly interpret Aidan’s behavioral shift this past week. Sometimes the most affected are also the most helpful.
10. BREATHE, COUNT, do what works for YOU. Discover what calming strategies help you. Some take deep breaths to calm themselves; others count to the hundreds to cope with an anxiety or panic attack. I personally enjoy a glass of Cabernet to calm my PANS nerves. Nonetheless, know that you are NOT alone. As I write, my daughter is telling me more about how Aidan’s flare behaviors affect her physically. Sometimes she counts, other times she breathes, cries or FaceTimes a friend. She does what helps in the moment, and so should we as parents of PANS and PANDAS kids. If taking deep breaths or counting does not work for you, my daughter also recommends watching “The Office.” At least, that’s what has worked for her – until she reached the last season finale.
Don’t fret, my dear. I’m starting Aidan on Azythromiacin in the morning.
MJ Keatts is a mom of three – one of whom inspired her to start this blog. A journalist by trade, minimalist at heart, and a stunt girl in her dreams, MJ proudly admits that she’s learned more from her kids and husband than she could ever teach them herself. She loves to laugh – especially at herself – and one day hopes to amaze her husband and be ready on time.