PART 3 - DEAD ENDS WITH TRADITIONAL TREATMENT
“The relief that washed over me in that moment was incredible. Finally, after months of speaking with so many providers, after countless hours of research, and endless sleepless nights we had found someone willing to listen and help. It was Friday May 15th … “
Four months. That’s how long it took us to find a PANDAS literate physician - who after reviewing all our video footage of his behaviors, reading his medical records, and then seeing Miles virtually - gave us the official diagnosis of PANDAS. Four months is a very short amount of time to get a PANDAS diagnosis. For many parents it can be years of a tireless search and waiting game for a provider who will be of help. Children are often misdiagnosed along the way because many providers are not educated about PANS and PANDAS and simply default to a cornucopia of diagnoses such as OCD, depression, anxiety, autism, Tourette’s, and ADHD.
When Miles came home from the hospital on May 15th he immediately began treatment under the direction of our new pediatrician with antibiotics and anti-inflammatories. The goal of going on antibiotics is to eradicate the infection - and in the case of PANDAS - we’re talking about strep. Miles had a documented history of both strep throat and strep impetigo which is a skin infection. Miles also had evidence of another past infection known as mycoplasma pneumoniae.
It’s important to know that there is no cookie cutter treatment plan for PANS or PANDAS. It’s not like treating an acute traumatic wound that requires the operating room for lifesaving intervention. It is standard practice in traditional Western medicine to start treating PANDAS with antibiotics and anti-inflammatories like Aleve or Advil. Miles went on Aleve in May in addition to antibiotics. The goal of the anti inflammatories is to bring the inflammation in the brain down. As the body makes antibodies - proteins made by the immune system in response to foreign invaders like strep - there’s an inflammatory response that happens and in the case of PANDAS this inflammation (swelling) occurs deep within brain structures known as the basal ganglia. And that’s why these kiddos develop neuropsychiatric signs and symptoms.
So there we were - hopeful that antibiotics and Aleve would help to lessen the symptoms and start to bring our boy back. We knew we had to give the meds time to work - at least two months we were told. He was also on two different psych meds as well. A SSRI known as Lexapro and an antipsychotic known as Abilify. (I am happy to report that at the time of this post he has successfully weaned off both of those!) While psych meds can be lifesaving - they also come with the cost of some serious side effects.
As we waited for the antibiotics and Aleve to do their job we were also beginning our journey with a variety of support services. We began working with the Department of Mental Health (DMH) and the Justice Resource Institute (JRI). Both of these organizations have offered us tremendous support through a variety of different services such as a case manager, therapeutic mentoring, in home therapy, and an in-home behavioral team. I cannot say enough good things about these people. They have helped to keep us going!
July approached and we were not seeing any improvement. At this point we had already made a difficult decision to send our younger son to North Carolina to spend the summer with his grandparents. Ty and I were completely overwhelmed and exhausted by the daily traumatic stress of caring for Miles. It became time to consider the next level of treatment known as IVIG. I had a lot of experience with IVIG when I was a lung transplant coordinator. We frequently gave it to our lung transplant patients when they had antibody mediated rejection. And it is given to PANDAS patients under the same concept - to try to “reset” the immune system. IVIG stands for intravenous immunoglobulin. It is a long IV infusion that is a pool of antibodies from the plasma of blood donors. So all y’all reading this … if you’ve ever donated blood - THANK YOU. Typically we always think of how our donated red blood cells will help people bleeding out during or after surgery and it’s not well publicized how much of an impact your blood donation makes!
We made the decision that it was time to try IVIG. In late July Miles spent the day at Tufts Floating Hospital for Children and received his infusion. It was rough. He suffered through it like a champ with nausea, vomiting, and a severe headache. These side effects lasted two days and we laid low at home administering Benadryl and Zofran to try to offset the ickiness. It would be six weeks before we could truly know if the IVIG had helped.
Labor Day arrived. Our six weeks had passed and Miles showed no signs of improvement. School would be starting soon and we brought our younger son back home. The first two weeks of school were ok but then everything went downhill and spiraled out of control. Ty and I decided it would be best if our younger son went back to North Carolina. We simply could not meet the needs of both children and our basic self care anymore and felt that it was more traumatic for our other son to be in our home versus separated from us. Miles began to refuse going to school and verbalized that “it was getting too hard to hold it together” while he was there. We were in the process of waiting for him to be evaluated for an IEP and we were working hard with our JRI team and the town’s Community Resource Officer to try to get him to school.
At this point I knew. I knew it was time to consider something I initially thought we did not have the bandwidth to explore. And that was homeopathy. If we had come this far and tried this much I knew we could keep going. I picked up the phone and made a call to California. It was time to explore other options.
In mid October we had a follow-up appointment with our rheumatologist from Tufts who was the specialist we sought out for the IVIG treatment. She agreed that the IVIG had not worked. She was honest - which I appreciated - and said she would not recommend a second dose. I told her we were going to explore homeopathy. I told her about all the success stories and how we felt it would not hurt to try this avenue. She agreed. At this point, we had nothing to lose.
Homeopathy is a medical practice and philosophy that the body has the ability to heal itself. It is a natural form of medicine and there are absolutely no adverse effects. Homeopathy considers all physical, mental, and emotional symptoms of an individual and remedies are prescribed based upon each person’s unique presentation. We were fortunate to have found a successful group that only treats PANS/PANDAS kids. Miles began homeopathic treatment in mid November and a month after I could not believe what was happening before our very eyes. It was incredible and for a short time - frightening - but we started to see glimpses of our child coming back.
Homeopathic treatment has been so powerful that it deserves it’s own post. We now know we have found the path to getting our son back. It’s not a linear process - and it’s very much 3 steps forward and 1 step back - but homeopathy has been the only thing proven to help Miles. We remain hopeful for the future and have been told due to the severity of his case that it will take approximately 24 months of treatment. We are 1 year in from the onset of his signs and symptoms and we know we can hang in for 2 years of treatment.
As I post this Miles is currently in a backslide. Remember I said 3 steps forward and 1 step back? It’s been a difficult and exhausting 48 hours. But we know it is temporary. Many people ask how we are doing now … some people have even asked, “Emily what do you do with your day?” I’ll be happy to answer those questions and share.
So stay tuned for Part 4 - Where Are We Now?
Today I took a walk with a friend in the woods. I needed to vent and share with someone who has had similar struggles. I told her, “I’m willing to be the PANDAS mom for a while. I’m happy to carry the stick for a few miles. I know others have carried it before me and at some point I won’t want to anymore.” Writing this series has brought me much comfort in sharing our story and I know it’s brought comfort and education to others.
No matter what you are walking through … please know you are not alone. Keep exploring what’s around the bend.
XO - Emily