Luca (3.5) & her battle with neuroimmune disorders

Before I start writing, I just wanted to say thank you for reading this. When I think of the last 3.5 years, I think of words like relentlessly challenging, dark, and isolating. If you find yourself wondering why we haven’t shared more about our journey with our daughter Luca, I would have to say that we have not understood clearly what we’ve been up against. As we have found ourselves in a situation few people have understanding of, we have felt isolated, and we turned to endless research and survival mode. The most important thing to us the last nearly four years has been to keep our heads above water and to keep our daughter’s life as peaceful as we could on the day to day basis.

Needless to say, we are out of our depths and as she is getting older, it is more and more evident that we need help. That Luca needs help.

Our journey with Luca started very young. She was always a very sensitive baby and when I look back, I could describe her as tense, colicky, uncomfortable, and easily set off. I would hold her close to me and step slowly into loud rooms because I could feel her recoiling in my arms. She never liked to be touched but clung to you in need—more than what I know is normal. At six months old, she started withholding her stool and continues to do so until this day. We have learned that she does this due to a sensory avoidance. She is afraid and can’t bear the feeling.

As she got a little older, she started doing things like lining up her toys, collecting small items and hoarding them. She wasn’t interested in food until nearly 2 years old and when she began, ate so precisely so that she would not get dirty. The slightest drip was a devastation.

These things progressed and all became more severe. She would be devastated by the sensation of wet hands, could not get dirty, screamed at tags on clothing. Certain sensations derailed her but not just temporarily. For hours. Very young, she developed night terrors and would wake up eight times a night screaming bloody murder, and nothing we could do would console her. Our presence was not a comfort. Holding her didn’t make a difference. Talking to her made her more angry. She would thrash and entered “fight” mode in defense. Of what? We had no idea. She experienced hallucinations on a few occasions, terrified about something we could not see. We were exhausted and confused. Our sweet girl seemed so… unhappy, but we couldn’t figure out why. She was so incredibly loved by so many people. She lived a beautiful, safe life.

Her struggles going to the bathroom became so challenging that we wouldn’t leave the house some days. Her aversions around washing her hands became an hour long task. And more than anything else, when she was upset, her rage was something I’ve never heard of before. We had asked every parent we could if what she does seemed normal… and it did not seem to make sense. Her rage at such a young age was frightening. She would rip the carpet or blankets with her teeth.

Around the age of 2-2.5, we knew for a fact that something wasn’t right and we really began to dive deep into finding answers. Since then, we have explored so much. Ordered stool analysis tests, gotten consultations, talked to holistic health practitioners and homeopaths. I personally have spent countless hours in research trying to understand what our daughter was going through.

Now that Luca is nearly four, I can see her struggling to adapt to daily life. She thrives when her life is predictable, and struggles to adapt to change in any way. Her eating has become ritualistic and she finds herself “stuck” for hours on basic tasks. Most days, we cannot leave the house before 11:30-12pm. She’s developed verbal tics, compulsions and obsessions about items, and is often found gritting and grinding her teeth.

As parents, we have found that Luca’s rage is blind and that beyond it, she is truly afraid. As if she is at the center of a storm whirling around her and she cannot get out. She screams for help but anything you do makes it worse. There has only been a couple instances where we are able to get through to her—by talking THROUGH the rage and into the little girl we know is there… By reminding her that she is loved and that we see her somewhere in there… And only then, does she collapse at our feet, whimpering. Not always are we successful. Sometimes, the rage is too blind, and we feel like we are losing our little girl to herself.

In our research and pursuit of her healing, we have found a few things.

1. Luca obviously deals with sensory processing issues that need the attention of an occupational therapist. She needs the care/advisement of someone who can help her integrate her senses properly and hopefully allow her to live day to day life without being so stuck and afraid of the world around her. The cost of OT is around $120/visit, and we are looking to consult with someone at least 2 times a month for about a year, to start. To do this for a year would cost about $3,000.

2. With what we know about Luca’s health history, we suspect that she has PANS, a neuroimmune disorder. The easiest way to describe this would be that her body is attacking itself in attempts to deal with the bacteria, mold exposure, and toxins in her body. My maternal health has not been good, as I have struggled with heavy metals, years of antibiotics, vaccines, MRSA, candida, etc. and as we know, maternal health and gut health is greatly passed on to baby.

3. We have confirmed SIBO (small intestinal bacteria overgrowth) and we have lived in mold during her pregnancy and in her first two years of life.

4. We were also able to confirm that she is not absorbing nutrients properly which suggests MTHFR, and concludes she may not be detoxing properly either.

5. Another lead that we have found which we have not had the means to explore is Lyme disease for myself (her mother) and her. This could be another contributing factor to PANS and needs to be treated before she can heal. We have found a specialist in PANS/PANDAS, neuroimmune disorders, and Lyme. But the cost is enough to make me nauseous in disbelief. A new pediatric intake is $1,200 and it would cost up to $900/month for a commitment of 6 months. Sadly, this kind of cost is not unheard of for a specialist, as I was quoted similarly for other specialists as well. The cost of this kind of service would be around $6,000, not including labs and supplements.

6. None of these things cover the monthly cost of supplements/treatments we believe would contribute to her healing.

Most of these things are not covered by insurance and OT cannot be covered at this point because she is not apart of a public school system or charter program in her school district. And yet, the pressure of getting help as soon as possible is immense; the younger she is, the more likely it is that we can make true change in her brain due to brain elasticity as a child.

We are a single income family and truthfully, we live very frugally and carefully as we sometimes struggle to meet basic needs. We do anything we can to make extra money and take up odd jobs to help support the cost of our family’s needs. But we really do need help. I cannot foresee us being able to do this alone. We can slowly try to chip away at this over the next 5 or so years but there are some chances for healing we believe might be gone if we do not act soon enough. We know that the younger she is and the earlier we get her the help she needs, the better chances she has for a healthy, happy life.

We have considered a fundraiser for Luca several times in the last couple of years and finally, we just have to put our story and family out there and ask for help. Without these struggles, Luca is a delightful, intelligent, witty, loving girl. She is incredibly sweet, empathetic and cares deeply for other people. She loves her family more than anything, loves her baby sister, riding horses, gardening, and reading.

If you’ve read all of this, I have to thank you again. What I’ve written feels as if I’ve barely scratched the surface and yet, I am overwhelmed with the vulnerability of our situation. Even if you cannot personally help, please help us by sharing. To know Luca is to love her. We want nothing more than for her to love a happy, healthy life, and have a carefree childhood.

For informational purposes:

Aspire Care / information about PANS/PANDAS and neuroimmune disorders