Today was already going to be overwhelming, as we were finally going to go over a plan of action for my son who has been suffering from PANS for the last 10 months…
If you are new to my blog then a good place to start is here and you can read about my son’s story and what are summer was like after 12 weeks in a psychiatric hospital and multiple dark days over the last 10 months as we searched for answers to his sudden spiral into Darkness.
24 doctors later we finally had a diagnosis of PANS from a great neurologist in Rhode Island but after running countless test they could not figure out what was causing the encephalitis type reaction in his brain. We left heartbroken with a diagnosis and really no plan, no answers, it seemed like a death sentence for my whole family, how were we going to go on living like this day after day?
I had spent months semi-healing him myself when specialist after specialist just wanted to put him on more anti-psychotic medication and diagnosis him with every form of mental illness in the book, I knew deep down in my gut they were wrong. After countless doctors saying I was crazy and that I needed to just accept it I never gave up. Every time I wanted to a few select friends I had left would set me straight and I owe my sanity to them. You realize who cares about you and your children when you go through this journey. The sad thing is you can’t even be mad at the friends and family who call you crazy behind your back or who have abandoned you because in a sense everything about PANDAS/PANS is crazy. The only people who truly get what you are going through are the people who have gone through it themselves, it’s a very different then having a child with a documented cancer or other illness because the world of PANDAS/PANS is so new. The few doctors who treat it and know about it are learning new things every day, the kids present with such a wide range of symptoms and issues that it is impossible to navigate many days. So if your child has just been diagnosed with PANDAS/PANS or LYME my first suggestion to you is find a good support system, a local group or organization, those families, while they might be strangers to you, will be your support system through the upcoming months. A friend once told me PANDAS/PANS is a very lonely and isolating place, and truly I never knew how true those words were until the last couple of months.
Looking back on getting to today April 12, 2016, my biggest regret was I didn’t see the integrative doctor we have been seeing for the last six weeks, I gave myself every excuse not to make an appointment. Money was the biggest excuse, many integrative doctors are not covered by insurance and with losing my job and my career to my son becoming ill you most of the time don’t have a choice there is not a lot of medical assistance for rare illnesses. The thing was deep down I wanted to believe the specialist and medical industry that my insurance covered would figure it out, they would see what I was seeing, and at the end of the day that was just not going to happen. The reality of the world we live in is that even the best doctor who wants to help your child just can’t, they financially have to see over 100 patients a day just to make payroll for their practice. You truly are paying for that doctors time, the doctor needs that time to look at the whole picture, and that is what an integrative doctor does. They look at every working component, your genetics, your past history, every symptom, every food you put into your mouth, they spend hours breaking down your labs and slowly building the puzzle that makes up you or your child. So don’t waste the money in copays to doctors who are going to waste your time and give you no answers, ask your local PANDAS/PANS moms who they went to, and save up the money or apply for grants and fundraise do what you have to, because in the end it will make a world of difference.
It had been the longest six weeks of my life, we received some labs back for both my son and myself when we went back last week for my daughters first appointment. They printed out our results and told me to read them and formulate questions, and bring those questions with me to today’s appointment. Our doctor knew I had some medical background and that I am a planner and researcher at heart. She knew I would not be able to start treatment for him until I weighed out every option, and researched every test result that had come back for myself, I just wouldn’t be able to physically pull the pin. When we arrived he was already off, he had been hyper and a mess really for the last two weeks, and I had no clue what or why he was in another flare , every possibility was leading to dead ends, I at this point was just counting down the days to finally have some answers and guidance on what to do next.
2.5 Hours later and a very ruff doctors appointment for garret they got to see my world with him and how he can be great one minute and really bad the next. She has seen him twice and each time he was well behaved but today, slamming his head on the floor of her office, stimming , jumping off furniture and there was nothing I could do to calm him, soI had to just keep him safe and go over his blood work and plan of action while I died a little inside as every minute passed. She at one point looked at me and said, how do you and your husband get anything done when he is like this?
I smiled and said, we don’t get much done, we don’t go anywhere with him, it has been a year of me thinking I was healing him and getting one good month and then we hit rock bottom again.I’m exhausted…and I began to cry…not any cry…..hysterical ugly crying…10 month’s I held my shit together and today of all days I lost it.
She pulled me in another room and had the counselor in the office sit with me while they looked over him and formulated a plan. They let me sit and cry for twenty minutes by myself, as I looked up at the counselor she said you need to do this or you will never get through the next part.
You see…I am a fake it until you make it kind of person, I always have been, I’m that person who is tuff for everyone, I am open and voice my frustrations but I don’t really get it out fully, I mask it with my tough Italian persona. I don’t break down and hit that deep dark place, I have once in my whole life and never wanted to revisit that feeling, but today I had to, I had to accept this SUCKED, that this part of being a mom was unfair, this wasn’t what I imagined for my family, but then again who really does? I composed myself as she walked back in and she said LYME and PANDAS/PANS has stages, like grief, his life is never going to be like it was, we can get him better but he will never truly be the same child…he will be stronger for this, and you will be a better mother for this….I promise! So I wiped away my tears and put on a brave face like every mother does and I continued to fight for my child.
As we went over blood work, I for the first time felt full relief and also an utter shock for what I was reading at that moment. As you go through this journey, you want answers and after not getting them you become so use to going to follow-ups appointments and hearing, everything looks great, and you know it isn’t but you accept it in a way. TWENTY FOUR DOCTORS and OVER 100 lab test/procedures/and countless other test missed what was wrong with him. The biggest reason why is the labs that the test was done through, they are not controlled by insurances companies or government funded institutions. They are not legally held to the same protocols as well, meaning there was a reason his results took six weeks to come back, every bit of his blood work was analyzed and cultured, you receive levels for everything not just positive or negatives, you get the whole picture. That was key, but for the first time I had answers and let me tell you as I saw how many infections they had missed I became overwhelmed by just how many answers we had received.
EBV(Ebstein Bar Virus) Mono
HHV-6 Virus levels high
Yeast Overgrowth in his stomach
Bacteria Overgrowth in his Small bowel
8 additional food allergens that we had still not removed
Immune deficiencies in CD57 and CD8/CD3 were completely not functioning.
MTHFR mutation- Making him not detox so he was poisoning his body basically.
The good news is we know what we are dealing with finally, and we can begin to treat it. The bad news is his immune system does not know how to kick in and fight the infections, so the plan is we start to give immune support, anti-virals and heal his gut and most importantly detox support. Hopefully, his body will begin to kick in and do what it is supposed to on its own and the inflammation that is causing swelling on his brain will go away. It will sadly be a rough initial couple months as the treatment tends to make you feel worse in the beginning and eventually feel better. The treatment plan will take two years from start to finish, each month he should feel better than the last and hopefully have no long term or permanent damage from the infections if they can remove them all completely. As we left and I picked up his twelve new medicines overwhelmed and burnt out I went to ask him why he was so out of control in the doctors and looked back and he was asleep. The hardest part of this disease is accepting that these kids don’t mean to act the way they do, they are acting out to tell you something is not right. When they run around a doctors room in circles like they are on fire….know THEY ARE, their insides feel like that and running around is the only way they can express it. When they can’t sit down because they feel like crawling out of the their skin, it is because that is the bacteria and infections crawling through every ounce of their body. Its exhausting to be a kid with PANDAS/PANS and Lyme…and even more exhausting for the family, but be patient and stay the course. Most of all listen to your maternal instincts, there is a reason you are connected to your children and why mothers can sense when something isn’t right…use that to guide you!