I know several parents, including myself, who are walking the journey of recovering from brain injuries such as PANDAS/PANS and autism, right along side of their child, working to recover their own health. Using homeopathy, functional medicine and many other therapies, in order to regain their health as they heal and care for their children. I had a jump start on my daughter only because I’ve been around longer, and due to a series of accidents around 2009-2010 and my increasing feeling that our Western medicine doctors were using myself and my children as guinea pigs in an experiment, I began to search for answers and seek out real help around that time. Before that, although I wanted to do things naturally, I really lacked the resources, or the courage, to do so. Sometimes, it takes some extreme events to wake a person up!
As I have spoken about before, I have autoimmune issues that I have mostly recovered from, some things I am in remission from, and a few more that are a work in progress, but overall, I am by far the healthiest I have ever been in my whole life- because i finally started to truly care for myself and become my own advocate. By leaving fear behind, and taking a leap to make necessary changes, we are eventually able to get to a point where we can truly have freedom in our health, both physical and mental. Is it easy? NO. Will you always find the right person to help you right away? NO. It is normal to get frustrated and take two steps forward and one step back along the process, but I have to caution you to NEVER GIVE UP.
We know that a lot of docs don’t fully understand autoimmune issues, or how to stop them from being a problem, and parents who have children with these conditions know all too well that so few doctors truly understand PANDAS or PANS. Along the way, you may even find yourself educating a doctor or two. I sure did, when I was able to inform my doctor about the link between Hashimoto’s and Epstein-Barr virus. She looked it up in a medical journal right in front of me, and told me that this was going to drastically alter the way that she would treat her patients in the future. How important it is that we speak up, don’t let ourselves be intimidated by our practitioners, and speak our truth!!!!
Functional medicine has been a cornerstone in helping along our journey of recovery. And many of you parents know that getting to the bottom of these conditions requires a lot of testing, from blood and urine, to stool and saliva. We have had tremendous success in treating me right alongside my children. What you are likely to find once you go down this road, is that your child’s health will provide many clues are your own, and vice versa. This is so important because it really speeds up the process of healing for both of you. In order to heal your kiddos, it is much easier if you are feeling your best, and in this modern age of poor diets, stress, environmental chemicals and computer screens, many of us don’t remember what it was like to feel good. How are we going to take care of our kids and guide their recovery and advocate for them, if our health fails? We did not have to find a functional medicine practitioner who understood PANDAS/PANS as a specialty- because we would approach her treatment from an autoimmune standpoint with supportive therapies along the way. This opened up a larger number of options for us.
If I think about the first thirty years of my life, I didn’t take very good care of myself. I never stopped to think that I had the eggs of my future babies inside of me from the day I was born. Think about that for a minute, and then think back over your life. It is NO WONDER that if my babies developed issues, that I would likely have the same or very similar, and often times, because of the progression of time and the gifts that come along with aging, our issues are much more intense and difficult to recover from. One of the things that has to be looked at, if you are trying to get to the bottom of your child’s triggers when it comes to PANDAS/PANS, is the viral/bacterial load of the mother, and potentially, the father. Epstein-Barr, Lyme disease, countless co-infections, bartonella, cytomegalovirus, parvovirus, mycoplasma, candida antibodies, chlamoydophila pneumoniae, herpesvirus, and so many others. Immunoglobulins need to be looked at. A qualified functional medicine practitioner can guide you in this.
We want our children back. For many families dealing with PANS/PANDAS, the kids just do not FEEL well. The tremendous gut dysfunction, fungal overgrowth from careless antibiotic use, distended bellies, the anxiety, rages, panic attacks, sleep issues, the OCD, the rashes- all of the things that cause our children so much suffering-why would we not try everything possible to help them to FEEL their best? And for many of us who had one child- and then after vaccine injury or other type of traumatic brain injury- all of a sudden had a new, different child with a whole new set of issues-it is unspeakably difficult, traumatic, sad, startling, shocking, and in many cases, very isolating for the family- the child, and the parents. After my daughter’s diagnosis, I became filled with an overwhelming drive and desire to do everything possible to recover her. Along your journey, if you find a practitioner who doesn’t seem to want to listen to you (YOU know your child best) or they want to charge you a great deal of money for a “standard” one size fits all protocol, or they dismiss a great deal of what you say, I strongly recommend that you politely excuse yourself, and never return. There are many other folks out there that can help to bring healing to your family. And I will save more explanation of this next thought for a future post, but often times, some therapy from a licensed professional is invaluable at times like this. It can help you to understand your own power, get rid of any old negative thought patterns that are holding you back from creating the best life possible for your self and your family, and be so tremendously healing in its own right. It can foster confidence where there is none, bring hope to situations where hope has been dashed upon the rocks. I myself had a wonderful Christian counselor, and she was, and is, a true, priceless gem.
Shortly after we started actively healing our girl, a kind mother got in touch with me, and detailed the tremendous success they had in healing their child by creating a space of convalescence within their home, just like you would for one who had suffered a more traditional traumatic brain injury, such as from a car accident or fall. She detailed how they had removed her from all “active” extra curricular activities/sports, kept her away from birthday parties where she would eat inflammatory foods and potentially be around too much rough activity, and even kept her out of PE classes at school for a period of several months. At home, there was zero screen time, an emphasis on creativity and reading, all healthy food, zero food dyes, zero packaged food, more than adequate hydration (water is SO important to the brain), instrumental music playing in the background most of the day, a regular bedtime routine, and a great deal of snuggling and resting. Now, for many very active families in today’s world, you can imagine what a difficult transition this can be.
I quickly inventoried what our current situation was, and we had most of the food piece underway, we still had some screen time, we had a lot of creativity and reading, we had a peaceful home with soothing music on all of the time, but we still had her in tae kwon do. Tae kwon do, where during the sparring portion of the class, she would routinely get hit in the head, even though they wore protective gear. This was very alarming to me, and I could not believe that I had not thought of this earlier on my own! She took a break from TKD, and then for a little while, had some one-on-one lessons with her awesome instructor, who knew about her health situation, and he had hoped that some of the cross body movements and balancing would be useful in her healing. We persisted with that for about a month, and then ended it because we didn’t feel like it was helping, and we really needed to give this low-to-no activity hypothesis a shot. Even though PANDAS/PANS is not a traditional brain injury, it is still a brain injury. We also kept her out of all pools that year, as chlorine can kill the good gut bacteria that we were so desperately trying to balance,(we absorb SO MUCH through our skin!) – and pools, no matter how well they are maintained, can be a harbor for resistant bugs and viruses and bacteria. It was plain to see how this would be best avoided. In my countless conversations with those who have walked this path, those families who have also created a similar space of convalescence have had great success.
Looking back, we are so glad we had this time of quite respite in our household. My husband and I believe that it played a big role in her recovery. Since one of our daughter’s most severe symptoms was nighttime fears/sleep issues, sleep was at a premium in our home, so the more calm we could foster for ALL of us during the day, the better our moods would be throughout. We continued with regular chiropractic care for her at this time, and he suggested that walking and even jogging should be okay for her to resume, and hopefully would help recover some of the cross-body brain healing that we do desperately wanted to foster. She was excited at the prospect of being able to run more. And now, to this day, she is involved in a local children’s cross-country running group, which is so positive and fun and important for her physical and mental well-being. It is a very good fit for her, and for her brother, too.
Next time, I’ll talk more about brain health supplementation and the isolation/lack of support that we, and many families living with PANDAS/PANS, have dealt with, and some ideas for coping.
Part four- reminiscing
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