What to Expect When Your Child is Diagnosed with PANS or Lyme Disease

Relief

Your child has a known medical illness. Yes! Part of you feels like celebrating. Part of you feels like sobbing. You're not alone in dealing with these illnesses, but that doesn't make you feel any better. You're just glad that there is a word for the torment your child has endured.

You will hear success stories. You will be swamped with dismal stories. You don’t pay attention to the sad tales right now. You knew there was something wrong and you were right. Now your child can get treatment and that's the most important part of this.

Fear

Will your child be ill like this forever? If you have begun treating after the first onset, you’re in good shape. You might be able to reverse symptoms. When it comes to Lyme and co-infections, many experts recommend treating until symptoms dissipate and then adding on a few more months of treatment. You cannot eradicate chronic Lyme and the person can have relapses. With PANS, each additional flare exacerbates the illness. Many of our children have seen at least a dozen doctors before being properly diagnosed and treated and these children may retain some symptoms throughout their lives. You will get used to a new “normal.” So what if your child has tics as long as your child is healthy and happy?

Sadness

Your child is ill and no one understands. People don’t believe the diagnoses. People question your parenting. Perhaps even your spouse questions everything. Friends don't call. Your child is symptomatic and you cannot leave the house. You feel alone.

Frustration

It’s taken long to diagnose and your child has suffered much. Doctors have blamed you for your kid’s symptoms. Doctors have told you that chronic Lyme doesn’t exist or that PANDAS is controversial. You have been battling for treatment and it feels like the world is against you. It is. That’s real. You’re a pioneer. Someday, there will be better treatments, but for today, your child is stuck in one large experiment. However, you’re not alone and together, we can make change.

Navigating Medical Treatments

Do you have a PANS specialist? Many pediatricians don’t yet know how to diagnose PANS/PANDAS much less treat it. Have you tested for Lyme and other tickborne infections? Have you tested with specialty labs? You’ll have to learn all about the controversy regarding chronic Lyme and why some laboratories are better than others at picking up the infections.

There are different types of medical treatments, ranging from antibiotics to antivirals, IVIGs  to plasmapherisis, homeopathy and naturopathy. Some doctors are integrative, making use of vitamins and supplements. Some doctors stick mainly with antibiotics. As a parent, you will find yourself up late at night researching all of your options and asking others for referrals to doctors.

Counseling

Cognitive Behavior Therapy (CBT) is often suggested for children who have OCD, but this is only effective when the child is not flaring. Either way, your child might need a therapist in whom they can confide. And you need someone to talk to. Your marriage needs support, especially if both parents differ in their approach and beliefs about the disease. Healthy siblings need support. Heck, the family pet might need some comforting. Or maybe you get a therapy animal.

Self-Doubt

Are you on the right track? Your child just began taking antibiotics and is...worse! This could be a Herxheimer's reaction, where the die-off of bacteria in the blood result in an increase of symptoms. Or everyone, from your mother to your pediatrician, questions the diagnosis and claims they do not believe it. Should your child be on this level of antibiotics or steroids or IVIG? You will question your doctors. You will be frustrated at the lack of answers and research.

Safety

If your child is raging, which can happen with PANS and with Bartonella, you must determine how to best contain your child. Psychiatric hospitals are not your best option but if your child is suicidal, you must take all precautions. It is a fact that children and teens with PANS and Lyme have killed themselves. And many more threaten to. Some psych meds will make your child worse. PANDAS Physicians Network recommends going low and slow with medication. Only you know what is right for your child; there are parents in support groups who will condemn all psych drugs but they might be necessary. Then again, IVIG or even a dose of oral glutathione can sometimes make a huge difference. There are genetic tests that can help determine which drugs will work best for your child but even these are not perfect.

Diet and Sleep

Your child might need to keep gluten or dairy free. You might test for food sensitivities. Your child might rebel, eat that ice cream or pizza. Flare. Extended family might bring food not on the diet plan or question your sanity in keeping the diet. Your child might not be able to sleep alone at night; this is a common PANS symptom. You will quietly let your child sleep in your room, your bed, even if your child is not small anymore and society would not approve.

Sanity

This is overwhelming. You will come back to this feeling time and time again. What works for one child won’t work for another. What works for your child at one time won’t work again. The research is too new and there are too many possible triggers. Support groups are great but people will throw out all types of advice and you need to weed through it. And again, support groups are peopled with parents, not doctors. Even the experts do not have all the answers. There is no known cure for every child. Yet.

Resistance

Many spouses are stuck here. Many extended family members will remain in this place. They will see your child’s symptoms as behaviors and blame you for bad parenting. Medical providers might question the diagnosis and treatments. Educators often do not understand the disease and how it affects everything from processing to comprehension to handwriting to math facts.

Financial Strain

Many of these doctors do not take insurance; how could they when they spend hours with you? And when their methods contradict the preaching of the CDC. You might need to put everything on your credit cards. You will pay every doctor who doesn’t take insurance and pay every copay for doctors who do take insurance. You will look into deducting medical expenses from your taxes. You will cut back on movies, restaurants, vacations, new clothes.

Deprivation

Financially, you might not be able to handle movies, restaurants and vacations. But your child’s symptoms may prevent outings anyway. Sensory issues, anxiety, depression, rage can all affect how a child reacts to being out in society. That vacation you planned can turn into the most miserable week of your life if your child is flaring. 

Numbness

You just cannot read another article or speak with anyone who has experience. You do not want to know more. I remember feeling this way when we received our diagnosis of Lyme Disease. I skimmed over Cure Unknown (Pamela Weintraub) and watched the documentary Under My Skin. And froze. People had sent me the names of friends to contact yet I could not pick up the phone. I was saturated with information and frightened.

Perseverance

You can’t stay in the numbness phase. Your child needs your help. Slowly, you reach out to others and get advice. You learn how to better detox your child who is reacting to the treatment. You make yet another doctor appointment.

Terminology

PANDAS, PANS, Bartonella, CVID, CIRs, MTHFR, Herxheimers’ reaction. IDSA vs. ILADS. Antibiotic cocktails. Supplements. IVIG. Babesia. LLMDs. Autoimmune encephalitis. IEPs and 504s. Soon you're walking around talking the talk. See http://www.panslife.com/pans-pandas-lyme-terms/

Educating the Educators

Your child might miss school. Your child might lose the ability to quickly calculate math facts or to read and comprehend. You will need to push for a 504 plan or even an IEP. You might want to get an advocate to help you navigate the educational system. Even educators and attorneys would turn to our advocate for support. Worse comes to worst, you might need to hire an attorney. Or pull your child out of school and get tutors from the district or homeschool.

Support

You may bond with other parents who are also fighting with everything they’ve got for their children. There are support groups online and you will find these. You will got to conferences and meet other people. You will read every book out there on the topic. 

Self-Care

At first, you give your all to your family and lose yourself. You hold your child when you can, you visit doctors constantly, you forsake time with your spouse, you give up your bed to stay with a child who has night terrors or separation anxiety. Eventually, you realize that you must exercise. You must cut the chocolate intake or the alcohol. You must get out and socialize once in a while. You find that you have trouble conversing with the rest of the world when people have no idea what you are undergoing. Support groups mean new friends. You bond with others, hopefully meet others in your area. After all, PANS and Lyme are everywhere. Stop comparing yourselves to others. Social media can provide support groups but also show you every achievement known to kids who are healthy. Unfollow those people who post about vacations with their healthy kids if you need to. Understand that your life goals have changed.

Advocacy

You don’t want others to suffer the way you have. You start a support group. You start an awareness campaign. You get involved with healthcare law. You question why more is not being done to help our children? Why isn’t there legislation? Why are insurance companies not covering IVIGs and other medical treatments? You want to make change. You connect with others who are change-makers.

Fatigue

You turn off social media. You sleep. You stop reading. You take a break. But your child’s illness doesn’t quit so you lift yourself out of your sinkhole and start again.

Experience

You will eventually learn the signs of a flare or a relapse. You will begin to pass on your knowledge to others.

Strength

You have more inner strength than you could ever have imagined. You are evolving and growing. Together, with other parents, we can have power and make change. Our children are resilient and persevere.

Belief

You might turn to religion or question it. You might find spirituality in the unexpected extra kindnesses that people give to you and one another. Our world does have a lot of suffering in it yet many people are truly good. You need to find something to believe in, a way of keeping hope alive.

Gratitude

No, you’re not grateful that your child is ill. But you can still have gratitude for life. Make gratitude lists—on paper, in your head. Be grateful for each new gain in your child. Be grateful for doctors who care and go the extra mile. Be grateful for friends and family who support you. Be grateful for blue skies.

Mindfulness

Learn to live in the moment, to not worry about tomorrow or constantly regret the past. Breathe. Do yoga and/or meditation. Be happy for small moments of special times with your family and friends. Cherish every moment. Where the world once felt smaller,  when your child was first ill, it now feels bigger, with the knowledge and connections you have made. You have an integral place in it. You will become more aware that everyone has obstacles, hurdles, and that many of these are invisible. You have the opportunity to become kinder to others.

Acceptance

This is your new life. But you’re not alone.