Many people who experience a trauma learn to store it away to minimize the damage. For some, the trauma is stored in the sensory portion of the brain and can be retrieved unexpectantly by a similar sensory experience. For example, certain smells or sounds can make one revisit a memory.
Most people with Lyme disease, PANDAS or another chronic illness have stories about when they were effected or when their lives were turned upside down by the disease. For many, this time is anchored by a sensory memory. And unfortunately is retrieved similarly.
I saw a teenage girl a few years ago who required a January hospitalization for her suicidal thoughts. The hospital staff did not understand Lyme/PANDAS and this experience unfortunatly created its own set of traumas for her. Now, anytime the snow begins to fall, she panics. She panics not because of winter, but because her brain reminds her that this was the time of year she was hospitalized. This was when her world was turned upside down.
The amygdala is the part of the brain that is reserved for danger. It is responsible for our "fight or flight" responses. Unfortunately, this part of our brain is unorganized. It recognizes danger, but does not recognize time, people, places, etc. It picks up on signals, memories, similarities and then sets off an alarm so we become on high alert and do not get hurt again. But often times, we are no longer in danger. When this happens, when our brain sets off an unnecessary alarm, it needs to be taught how NOT to do this.
The therapists at FTC are trained to recognize and access sensory memories in children and adults. We are trained to help the amygdala settle and know how to dismantle the alarms. This can be helpful with sensory memories but also with any type of trauma that the brain stores.
Recognizing triggers and mentioning them to your therapist can be very helpful in treatment. Talk with your therapist to see if trauma based response interventions may be right for you.
As parents of chronically ill children, we watch our kiddos cycle. They struggle intensely, and then months later, succeed. Different aspects of treatment target troublesome areas of infection with often devastating results and behaviors. When a family is living during a calm non-inflammatory time, parents often let their guard down and begin to exhale. However, whenever signs of the troublesome out of control symptoms begin to flair, it is easy to get into the "I can't do it" fight/flight or even freeze mode. Post Traumatic Stress Disorder (PTSD) is very relevant in parents with chronically ill children. Going back into the darkness when you have already been in the light, can be painful...truly devastating. Alert you support system. Let them in to what it is like in your world. Getting triggered at this level is neither fun nor easy.
Whether it is your child experiencing trauma responses to chronic illness, or you yourself, understand it for what it is and help those around you understand this important piece as well. Please! Feel feel to comment. Your ideas and responses are welcomed freely.
Having a chronic infection can lead to many complications, especially if one's body is sensitive to toxins, medications chemicals, etc and becomes overloaded easily. Many people do not know this about their own system unless something impacts their body in such a way that they can not recover easily. In many benign ways, this can be seen as a low tolerance to alcohol or high propensity for hangovers, or it could be a history of being sensitive to medications or even having an adverse reaction to drugs. Scientists have found the gene mutations MTHFR 677 and 1298 and say these speak to why this may happen in adults and children alike.
Why is this important with people who have chronic infection? Many Lyme and PANDAS literate doctors are now looking for the MTHFR gene mutations in their patients. When one has Lyme disease or PANDAS the body is working hard to kill off infection and then help it and the toxins produced, exit the body. If a patient has one or two of these mutations, the body has to work that much harder to clean out the infection and often can not do it without specific targeted help that aid the methylation pathways to work more efficiently.
I read a study that Dr Jones posted on his website about children on the autistic spectrum. This study noted that 98% of the children they studied, who were on the spectrum, had both of these gene mutations. This is interesting to me, especially because many mothers will say their child was fine until immunizations. It is curious how important efficient methylation pathways can be.
Recently I saw a teenage boy who in addition to physical symptoms (joint pain, fatigue, insomnia), was cutting, socially isolated and depressed. He began dabbling in pot and started skipping school. After a Lyme assessment, the doctor found this and other co-infections. The treatment helped his physical symptoms, but did not seem to touch any of the depression. In fact, the depression seemed to be worsening AND he developed paranoia and suicidal thoughts. This teen seemed to be on the path for self destruction. One day, as if spontaneously, the darkness lifted and he seemed like a happy adjusted adolescent. Curious, I asked mom what treatment protocol changed. The only change was the discovery of the MTHFR gene mutation. After a month of liposomal methyl B 12, liposomal methyl folate and B6, he was worlds different. In fact, shortly after this, he was able to cut back on therapy sessions and graduate!
This gene mutation is not only important in chronic infection, but also in those without disease. Countless clients of mine have found relief from depression, isolation, sensitivity to alcohol or medication, miscarriages and more. If a loved one's symptoms do not make sense, research and see if asking your doctor to test for the MTHFR gene mutations may be a good idea. A simple lab test can help you determine whether or not MTHFR is effecting you or someone you love.
Please feel free to comment or post questions to this blog. We welcome your ideas and perspectives.
Lyme disease in teens can look a bit differently than it does in young children. Many teens have more emotional regulation than a younger child and can recognize anxiety and sensory overload in themselves quicker, which makes protecting them easier. Add in hormones though, and it can complicate things very quickly.
A big piece in the puzzle to finding infection in a teen is first knowing what is normal and an average expectation for an adolescent. The first thing to do is look for assets. Practicing in Loudoun county is much different for me than when I worked in rural Georgia. Here, most kids have asset after asset...high IQ, basics needs met and far exceeded, good safe schools. Clean safe neighborhoods. Loving safe families. Looking for assets, means looking for what makes a teen feel stable and able to participate in life.
No teen has everything and many have emotional pain and dysfunction. But for the most part, I often see teens who are cutting, suicidal, very anxious or darkly depressed when in my mind, it doesn't make sense why they would be. Teens are by nature social. Even teens with a quiet temperament enjoy their close friends' company. When I see an adolescent who cocoons socially, I begin to explore reasons why. When I see an otherwise active kid taking frequent naps after school, I question what might be going on inside his body.
Knowing what is a reasonable expectation for a teen helps a clinician or even a parent find medical reasons for behaviors or moods that do not make sense. Kids who have an eating disorder or who cut on themselves generally have a trauma history or an emotional reason to do so. When you see significant symptoms in a teen without any known reason, begin to dig, explore and look for a cause.
Lyme, Bartonella Henselae, Babesia, Mycoplasma, the MTHFR Gene Mutation are examples of medical explanations for why a teen may be acting out or suffering emotionally in a particular way. Countless teens have found relief from dark depression via antibiotics or methylated versions of B12 and Folate. Some teens talk about seeing shadowy figures or feeling like their bedrooms are bugged. Others are too anxious to go to school or too edgy to be socially desirable. When a teen's presentation does not make sense, dig. Finding reasons for a teen's darkness can be exhilarating. Learning that there are reasons he soothes with pot or she cuts herself in the shower can be rewarding. What a gift to realize that there is an infection to fight, not a child. That the infection is to blame and not the parents.
If you suspect something more may be going on with your child, ask a Lyme Literate Doctor to do a thorough assessment. Referrals to such practitioners can be given upon request.
Before I knew about Lyme disease, I had a lovely teenager with a wonderfully supportive family in my office asking for help. It seemed their bright teen was cutting and suicidal and I did not understand why. I didn't think my therapy was helping much, but a few months later, she was remarkably better. I scratched my head, bewildered...not understanding how I helped this child when I didn't even know what I was helping with. A couple of years later she returned. Worse. Now on top of her old symptoms were new ones. Hallucinations, OCD thoughts, poor judgement. This time I knew about Lyme disease. This time she was diagnosed properly and treated appropriately. But why did she improve before? Much to my surprise, during my initial counseling treatment with her, she had begun extensive antibiotic treatment with her Dermatologist for acne (which some teens with chronic infection have). The year of antibiotic treatment was just enough to make her neurological symptoms retreat. A year or so after she stopped the treatment, her Lyme disease came back with a vengeance. By this point, I was able to send her for an assessment and she received Lyme related treatment right away. Unbelievable! Imagine if she continued to worsen. What would be her fate? I shudder to think of the teens who are institutionalized or in juvenile detention because of infection. But it happens. Every day.
Don't wait. If you suspect infection, get help right away from a physician who sees Lyme disease every day. We can help our adolescents...even if it is one teen at a time.
Many young children with neuro lyme or PANDAS experience brain inflammation and/or an impact onto the brain. Antibodies created to kill infection, become misguided and sometimes end up impacting the brain instead. Saying this out loud sounds really scary, but when you are living with diseases like these, managing the inflammation and outside exposure becomes a normal thing. I am not a physician, but as a therapist and a mom, I could tell when my son's brain was been influenced and when it wasn't. During these times, it was as if his brain was on fire. Keeping him safe during these periods was challenging. Inviting other children to play when he was in this state was risky. I hear stories from parents all the time about the things their children would do on impulse as a result of inflammation or attack and it can be quite sobering.
Young Children experiencng this , often do things they wouldn't normally do, and it is sometimes difficult to anticipate what they will do next. Many children experience OCD type thoughts and behaviors. Couple this with poor judgement and impulse control and maybe even psychosis and you may have a dangerous situation.
Sometimes children will act as if they "have to" do certain things or believe certain things...even if it is not rational or lacks judgement. This can manifest in many ways from heart breaking protest to keep you from leaving them, to running far far away from you...not to anything or any place in particular...just running. Some may try to jump out of a moving car or wear the same things over and over again. It almost feels like someone or something else is in control of your child and it can be very scary.
Inflammation is not something to diagnose and fix on your own. But if you suspect it, there are things you can talk with your doctor about. First things first. Stop the inflammation. I have seen more than one child respond positively to an NSAID like Advil. Some respond to a mixture of an antihistamine and an NSAID. Others need steroids. Even high doses of vitamin C can be effective. Your doctor can help you decide what combination is best in your child's situation. With the right cocktail, I have witnessed hallucinations stop that very day. OCD thoughts become manageable, aggression and impulsivity reduces. Amazing stuff.
Looking at your diet can help too. Gluten and Dairy have become known to produce system wide inflammation. Many who have Lyme disease find a great deal of relief when they eliminate these foods all together.
Picking apart symptoms is crucial if you are going to be able to manage infection in the best possible way. Knowing what you are seeing and detecting patterns can be vital in helping you and your doctor work together to decrease the symptoms. If you suspect inflammation may be occurring with your child, talk to your doctor about testing and management options.
Please feel free to comment or post questions. This blog is for you!
Maybe one of the easiest symptoms to talk about, but quite possibly the most difficult one to navigate is blood sugar. Kids with Lyme disease often struggle more than other children to keep their blood sugar level. Remember the years of the preschooler or toddler when your child needed to eat a healthy high protein snack every 2-3 hours? This is the same with many kids battling Lyme.
Here Comes the Protein Police
Having my own children with Lyme disease makes me sometimes feel like I am the "food police". It can be difficult for kids to watch everyone else eat whatever they want and whenever they want and not be able to do the same. If the ice cream truck comes to the pool and I give my kids ice cream the first thing I am thinking isn't..."Wow what a summer memory, this is very sweet" it's more like... "I want the kids to have this normal summer memory of getting ice cream from the ice cream truck, but what will it cost us today? Did they have a high enough protein snack before we left? Will it be enough to counter the sugar? Will we get an hour or two of good times and good feelings while the kids burn up their calories AND eat sugar without protein?" I often find myself saying no when I really wish I could just say yes. "Yes, you can have a normal childhood and eat normal childhood foods. You can develop sweet summer memories and not worry." Because they ARE too young to worry. In my mind I am thinking, A snack size bag of potato chips needs to be balanced with some cheese. Maybe if he drinks milk with those cookies....peanut butter goes with everything...beans, lunch meat, cocoa covered nuts, protein bars, low glycemic shakes.There are so many things to have in the food tool box. So many angles to consider and so much balancing to think about.
Why Monitor SO Much? What Does it Matter?
If you have ever had a child rage from unbalanced blood sugar, then you know exactly why. A blood sugar rage is like none other. Tears, hatred, rage, biting, kicking screaming are all popular symptoms of a blood sugar fit. The child who you know in your heart loves you suddenly hates you and wants you dead. Before I knew of the power of blood sugar, these fits happened in our house all the time.
I didn't know that when my child morphed into a fire breathing dragon there was a specific fixable medical reason for it. When we learned this, my husband and I approached the rages differently. I entered the room of my screaming, biting thrashing child with a spoonful of peanut butter or a tasty protein bar. We stashed unperishable protein treats in the car, in the pool bag, in my purse. We were the ones buying protein bars in bulk. But we also learned not to be so reactive. We learned how to be the "protein police" and keep their blood sugar level so it didn't have as many opportunities to careen out of control.
When you learn this, it is a gift. When you realize that burning up calories on the soccer field can make them crash on the way home you can help avoid it. You avoid sugary electrolyte drinks and substitute the electrolyte water instead. You eat cheese sticks or drink low glycemic protein drinks on the way to the pool. You make sure ALL meals are high in protein or you balance it an hour later with protein. Pancake syrup is replaced with peanut butter or agave syrup. The list goes on.
Empowering Your Child, Empowering Your Family
Children can be brought into the circle of understanding and can be taught what it feels like when their blood sugar is unbalanced. Learning how their bodies tick can be rewarding, but bigger than this, is the new knowledge that there really isn't something inherently wrong with them, but there is a reason for the rages. You aren't the only ones who hate the fits. They do too and often begin to hate themselves for being out of control and so angry and mean. When you all understand what the signs and symptoms are and you all communicate as a family about it, it minimizes the collateral damage and helps you all become a team with yet another really difficult symptom of Lyme disease. The more you know, the more power you have. The more information your whole family has, the more powerful you can all be together.
I remember the day my 10 year old finally got it. We were getting ready to walk the dog when she became a little whiny and a bit weepy. She turned to me and said, "Mom, I think I should go back home. My blood sugar is crashing and I need a protein bar". Wow. The power of knowledge for her to not only know how to listen to her body but also to know what to do with the information.
Experiment and Get a Plan Together
So gear up. Try out different protein avenues. See what the kids will eat in a crisis and what you can have on hand to keep them level. Fill your bags, purses and glove boxes and feel empowered because now you have yet another tool to help you child navigate a difficult yet very doable disease.
If you feel you can identify with the information in this article, please consult your Lyme literate doctor to be sure this is in fact what is going on with your child. This article is not meant to be diagnostic in nature but rather informative tools to help you and your doctor assist your child. Please feel free to comment or post questions. This blog is for you!
Gabrielle Anderson is the Director and a Therapist at the Family Therapy Center of Northern Virginia, llc in Ashburn, Virginia, a family friendly community in Loudoun County. She and the rest of the clinicians at the center can be contacted directly from the Meet the Team section on the company website.
Introduction to Parenting Children with Chronic Infection
In the past several years in practice, I am finding that young children with Lyme disease, PANDAS, etc are very much misunderstood as are their parents. In this section, I will be introducing the different aspects of parenting a child with chronic infection. Lyme disease and other infections can create neurological, behavioral and mental health related symptoms. This blog will provide discussions about many of these issues.
I know it is difficult for one to imagine what it is like to parent a child who is experiencing chronic pain and fatigue which limits their activities, from having to be carried often to being unable to play outside. Maybe they stop riding their bikes, dismiss playing at the park, want to watch a ton of tv or spend their time playing video games...a parent with a chronically ill child often parents differently than they ever thought they would. It can be a difficult balance.
School and social situations often become a significant challenge. A child with Lyme disease can struggle with executive functioning deficits. Some find it hard to do simple chores, complete homework on their own and keep a clean room. This is more pronounced than one might expect developmentally. Sometimes relatives or friends don't really understand and verbalize an expectation of chores and tasks that you know are not really doable. They fail to recognize the significance of specific behaviors which you realize indicate pending trouble. Getting them to understand these behaviors, stop judging your neurotic vigilance and avoid applying pressure on your child to meet their own expectations can be a challenge.
Emotional outbursts and lability are common in young children with infection. Their senses are often overloaded, making eating out or visiting other noisy environments difficult to manage. Social situations may become troublesome when your child might do something dreadful to another child. Your child, when in an infection spiral, may actually scare you. If children would react to over stimulus gently and easily that would make it easier, but they often don't. Overstimulation, unbalanced blood sugar, over fatigue can all cause meltdowns. Brain inflammation can create heightened anxiety, poor impulsive control, lack of judgement and OCD type symptoms. Emotional regulation becomes an impossible task. Many parents feel at a loss as to what they can do.
For several years I worked closely with a physician who treated Lyme disease, PANDAS and other infections impacting the brain. She taught me a great deal on the medical side of these infections and I studied tirelessly to understand the clinical implications for my clients as well as my family . This strengthened my abilities as a clinician, as well as guiding me through something very painful. Parenting my own children and watching their little brains being invaded by Lyme, Bartonella, Strep and Babesia. I know how hard life with infection can be because I not only see it often in my practice, but have also lived it as a parent at home.
I hope this section of the blog and the way each of these topics are explored helps you feel that you are not alone. Providing a place to feel understood and validated is the goal..maybe it allows you to understand someone you love a little better or helps you feel compassion where you didn't before. Lyme, PANDAS and others are complicated diseases and impact every area of our lives. Although you will not be able to identify with all symptoms, you will probably feel that many are familiar. Each entry will be packed with informative ideas and tools to help you and your PANDAS/Lyme literate team navigate a difficult disease with more confidence and a sense of hopefulness. Please browse the available topics now and bookmark and come back later for more!
Unless specified, Gabrielle Anderson, lmft is the author of these posts. Gabrielle is a Therapist and the Director at FTC. She is a married mother of 2 and has experienced chronic infection in the practice, herself and in her family.
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