Remember Miles who got an accessible van last year? His mom Michelle tells us their story in this next installment of Faces of Epilepsy. Listen closely to how this story is driven by Epilepsy but has so many other things going on. I appreciate her raw honesty.
My seven-year-old son Miles has epilepsy. Unfortunately he has a lot of health conditions and challenges which have resulted in his being profoundly disabled and medically fragile. But epilepsy was the one that stole him away from us, and brought us to our knees as his parents.
Baby Miles was our firstborn child, and the first grandchild on both sides. I had already had two miscarriages, so we knew about loss. I was 36 and my pregnancy with Miles was a good one. Only the off-the-charts excessive amniotic fluid in the last trimester was mysterious, although the “high-risk” OB-GYN had visually ruled out chromosomal issues because Miles was a big baby. I birthed him naturally at full term, and our new prince–the “beautiful soldier,” as his birth name Miles Julian meant–was received with the usual fanfare. His Apgar scores were good and he nursed well. It wasn’t until Miles was about five weeks old that he was diagnosed with Down syndrome.
I’ll never forget the doctor’s phone call at 1 p.m. on a Friday, me home alone with my baby. I had just been reading a randomly chosen excerpt from Max Erhrmann’s “Desiderata” on my fridge (“Nurture strength of spirit to shield you in sudden misfortune”) when the phone rang. The pediatrician told me the unfathomable news; I told him that he must have called the wrong family. Our baby was over a month old and healthy. He insisted on the diagnosis of Down syndrome, and I faded into a haze that I do not recall. Those weeks were a brick wall of lost dreams followed by a daze of bottomless grief. Stephen and I vowed that Miles would be one of the exceptions, and grow to be high-functioning; in fact, that idea became our only comfort.
Less than four months later, I noticed strange deviations in little Miles’ eyes early one Thursday morning while nursing him. I knew there was some sort of neurological threat going on. Days later, crying, we brought Miles to Children’s Hospital Boston, desperate for (but also terrified of) the answers. What we found out was that Miles had infantile spasms, a devastating seizure disorder considered to be the most difficult pediatric neurological condition that exists. It is also very frequently missed or misdiagnosed because of their relatively subtle presentation. Miles’ spasms were found to be symptomatic of his Down syndrome. Although we had no understanding of it–I still remember asking whether my son’s having seizures meant he had epilepsy–he was started post-haste on high doses of the steroid ACTH, which caused a terrifying GI bleed. And which he ultimately failed anyway.
We fought for Miles’ cognitive life for the next four years, while he had 100 seizures a day, bringing him down to Boston to get him the best specialized care. He was not a candidate for surgery because his spasms were diffuse, or scattered throughout his brain. So we had to focus on drug treatments, and our approach to choosing each next anti-epileptic for him was frighteningly uninformed, with scant clinical information to go by. Stephen and I each saw Miles and his terrible infantile spasms differently, and getting on the same page about his care was often nearly impossible. We slowly titrated doses of a new med up, often hated the side effects, and then had to decide together whether to continue on to a therapeutic dose to know if it might actually control his seizures. Rarely were we in agreement, as is so often the case with parents in this terrible trap. Generally speaking, I wanted to see a drug trial through, and Stephen wanted his boy “off that med.” The irony is that we were both trying in our own way to protect our son, above all else. We started couple’s therapy for so many reasons, but mostly to learn the tools for our day-to-day survival and compromises for the awful decisions–and, yes, oftentimes guesses–we had to make for Miles’ future. Statistically speaking, the majority of parents in these situations soon divorce.
When Miles was just ten months of age, we decided we had to initiate him on the Ketogenic Diet (www.charliefoundation.org), a still-misunderstood but largely effective dietary treatment for pediatric epilepsy. Desperate to rid him of his infantile spasms, I was forced to choose between continued breastfeeding and this dietary seizure treatment. This was particularly hard because my time nursing Miles was my only feeling of normalcy: when we could just be Mommy and Baby in any given day. (Miles was, in fact, the youngest patient ever started on the Keto Diet at MGH, and he paved the way for other infants to do the same.) Thankfully, the Diet reduced Miles’ spasms by at least fifty percent. We were buoyed by this news. But, unfortunately, we had still not achieved the necessary goal of completely ridding him of those seizures to protect him from severe regression and profound intellectual disability. So the battle continued on and on, because even the few-and-far-between positive results we achieved for Miles were never quite good enough.
We continued trialing drug after drug for Miles’ seizures, with still more failures and sometimes-scary side effects. Each new med attempt took months and months from start to finish, and caused tremendous strife between his dad and me. Meanwhile Miles’ skills as an infant were disappearing. We were losing our son in front of our eyes, despite our fighting with everything we had and doing everything right.
These devastating seizures stole all of Miles’ skills from him, and all of our hope with it. He became medically fragile, spending much of his time in Boston hospitals with us at his side. What many people do not realize is that losing neurological function is the start of a very slippery slope. At just 11 months of age, Miles’ raging seizures created a swallow dysfunction, and he was suddenly required to become exclusively tube-fed, which continues to this day. What more could be taken from our son?? He lost even the ability to smile, sealing our heartbreak. For a while, Miles’ father and I did not want to be here.
When Miles was two, he was overwhelmed with yet another pneumonia, and transferred to the PICU while at MassGeneral Hospital. Fighting to get enough oxygen on a BiPaP machine, he was put on a ventilator and large doses of benzodiazepines to force a coma. For seven long weeks Miles was intubated and completely reliant on the vent to do his breathing for him as he lay unconscious. We lived at the hospital with him and went home for weekend respite when he was stable. Several times the medical staff would crowd around him as his oxygen saturation plummeted, and we would watch, terrified and helpless. Slowly, finally, as winter melted away, Miles got healthier, and the heavy meds were slowly and expertly removed, one by one. He was finally able to be extubated, a frightening but amazing experience that was somehow like watching someone being born, or reborn. Emotionally we needed to bring our boy home, but instead agreed to spend the next five weeks at acute rehabilitation with him. The rehab facility was, ironically, back in Brighton, where Stephen and I had first met and lived together, but the carefree memories it stirred felt like someone else’s life. Coming home to our beloved Maine finally as a threesome, I wanted to kiss our living room floor. We had called the ambulance the last day of February and brought Miles home in mid-June.
The intense and endless struggles for us as new parents to a profoundly disabled child continued. Miles developed a second seizure type, called “atypical absence” seizures, which presented as staring and could be even more subtle to catch and to treat than the infantile spasms. He broke three long bones within two years, including the right femur twice, as a result of a “perfect storm” of epilepsy med side effects and a lack of weight-bearing. Miles simply did not have the physical strength to bear weight, which is critical to bone health. The Topamax combined with the Ketogenic Diet, two of the few seizure treatments that ever worked for our son, had also likely caused substantial insult to his small bones, but it was just another example of the terrible tradeoffs we had been forced to make. We felt ashamed that we hadn’t known about the humerus break until a chest x-ray for possible pneumonia a month later. Everything for Miles’ health was becoming a Catch-22; everything pointed to a worst-case scenario for him.
Stephen and I persisted through the daze of sadness and treatments and total care requirements for Miles. There were therapies of all types for him every week, even though he was often too blotto from seizures to function or respond. Surrounded by a minefield of limitations, we still tried to push the envelope to try to get Miles stronger. Whatever we could do to strengthen him physically, and ourselves emotionally, we did. Many days, it wasn’t much.
The only thing we knew during those dark days was that we loved our angelic son, and that we would always get him the best care as the ultimate show of our love and devotion. And sometimes, for me, it was all I could do to lessen all the guilt at what we had given our son for a life.
Then, three years ago, a miracle happened. After four years of refractory, pummeling daily seizures, the careful med cocktail that his sage epileptologist had patiently constructed for him clicked into place. We watched him like hawks and counted the decreasing spasms each day, holding our breaths as we had so many times before for years, fully accustomed to seeing them come right back. Finally, weeks later, we got our “clinical” confirmation: his seizures were now controlled and gone. Still we waited for them to come back as they always did. Somehow, this time, they did not. There aren’t words to describe how badly Miles needed that, and how badly we needed it as his battle-weary parents. And, nine months after a positive pregnancy test in the bathroom of Miles’ inpatient hospital room, there was a baby brother now. We needed positive change, and for things to somehow get easier as we bravely continued with our original family plan of more than one child. It was an impossible dream, but yet somehow, very subtly at first, that is when things started to gradually shift for Miles and for us as a family.
The last three years with a seizure-free Miles have been nothing short of a supernatural phenomenon. Finally he outgrew his terrible infantile spasms at the age of five. Since then, we have successfully weaned several of his anti-epileptics over months and months; each time, Miles has an awakening and gets exponentially stronger. Now we are slowly weaning Miles off the Ketogenic Diet. His seizure threshold remains high and rock-steady, even during illness and fevers (the ultimate tests). It is remarkable to have all that daily pain and anguish removed from your family’s lives.
The biggest gifts since conquering our son’s epilepsy have been the return of those precious smiles, and his contagious belly laughs. Most of all, perhaps, Stephen and I (and those close to him) can now each forge a relationship with Miles, because without his seizures, he is present. One of my insurmountable challenges as Miles’ mother was that I simply did not know how to bond with my baby when he was constantly checked out. It is so painful to give your child love and care every day and to never, ever get one iota of anything back. You tell yourself you’ll just keep marching along as a loving and devoted parent, but inside you are dying. It is only in hindsight that I can see that I disassociated from my boy because of a pain so great I just could not cope. Now that his eyes can meet and lock with mine, and he can laugh when I tickle him, and he can purposefully smile back at Mommy’s loving smile, Miles makes me feel needed and loved, and my days are different because of it. These days, I cannot get enough special time and snuggles from my beautiful soldier. We are making up for lost time.
Please don’t get me wrong: Miles’ challenges remain completely overwhelming, his abilities minimal. Our boy operates at about a one-year-old’s developmental age, and cannot walk, talk, or eat by mouth. He is incontinent. But this hard-working child’s victories send us to the moon with pride and delight. I’m convinced that those with typically developing children do not really know the depth of victory the way parents like us do.
The idea that Miles has started to learn is foreign and hard to trust. He’s showing us that there is a little person with desires and opinions and interests inside that precious and challenged little body and mind. For the first time since he was one, Miles is now purposefully grasping, holding, and even lifting small toys for a short time. This includes taking the eyeglasses off his home nurse’s face every single shift! He is now sitting up unassisted on the floor for minutes at a time, to our utter shock. He gives quasi hugs around the neck now, which feel amazing, and he holds his mommy’s hand–a dream of mine once I found my hope again. Because he is now seizure-free, Miles is finally getting some breaks, and joy (albeit forever bittersweet) and some normalcy have returned to our lives. Whatever the reason, Stephen and I have been given the sweetest and most innocent little soul possible to raise, and we always try to live up to that.
Through the epilepsy nightmare, we have learned that there are no guarantees in life. Although Miles’ seizures were eventually extinguished, with a neurological history like his, he could redevelop a new seizure type at any time. What our experience taught me in a very raw and real way is to genuinely cherish our health, our happy moments, and each other. It has also changed me and my priorities. We must continue as an evolved society to give of ourselves and to truly support those less fortunate than us. That means we must better fund epilepsy research, so that someday there will be a treatment for all seizure types–especially catastrophic epilepsies of childhood. Once epilepsy steals your loved one away, especially if that person is the little angel of your now-dashed dreams, you understand.
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