Wednesday, August 13, 2014

An Update

About two and a half months ago I wrote about my son's anxiety (read HERE).  It was hugely cathartic for me, and I hope someday it will be cathartic and reassuring for him. In some ways it feels like his diagnosis was a lifetime ago. And like most things in life, it also feels like it happened yesterday. To be blunt, we have come a long way. To be honest, we have a long way to go.

When we finally arrived, after seeing a therapist for a few weeks, at the point where we knew we needed to loop in our pediatrician and talk about medication, I felt both a deep sense of relief and an intensified fear of the unknown. I could not wait to start his medication, and I was terrified of starting his medication. Researching side effects, and overall effectiveness of a medication, particularly in children, is a scary thing.

My son was ultimately put on a common selective serotonin reuptake inhibitor (SSRI), and forever more I will stand by the effectiveness of this drug, for him...for now. He started on a very low dose, and his pediatrician and I hoped and were optimistic that we would be able to keep him at that dose. While we were warned that the drug could take weeks to have any significant effect, I maintain that we saw a difference in him immediately. Perhaps a placebo effect, but my gut tells me it was more than that. I think the biggest and most immediate change was that he began sleeping. My eight year old child was finally starting to sleep through most nights. Bless. It. My heart broke for him and all of the sleepless nights we had struggled through, when he woke up after taking his very first pill and was so excited that he had slept. He was excited to have simply slept. He was proud of himself for having simply slept. He was relieved to have slept, but was skeptical too, as he should have been, since we had tried (and failed with) so many sleep remedies before.

Also, his "tantrums" ceased almost immediately. He smiled and became a hugger reborn. We witnessed tiny but more frequent glimpses of the little boy we had once been so familiar with. We continued with weekly therapy and talked some good talks. And while life was immeasurably improved I still can't shake the guilt.

I remember sitting in front of the doctor in tears quietly whispering that I wished we had done something sooner for my child. Even now there are times when I can not shake the images of his anger, his tantrums, the terror and sadness and frustration in his eyes. Sometimes I can not get out of my head the sound of my shrill voice screaming at him. Sometimes I can feel his sister's frightened tears as I wipe them from her tiny cheeks. And I think to myself...three, nearly four years. We struggled. He struggled. But it took years to finally get him the help he truly needed.

And yet, as things go when cruising through life, before we knew it he hit a wall, plateaued if you will. It was amazing, disheartening and eye opening to watch the medicine decrease in effectiveness. The pediatrician had anticipated that this might happen, and we were scheduled for frequent (and I mean frequent) med checks. In the beginning I was unsure how long he would take the medication, but once I saw the glimmer of hope that this SSRI brought, I became desperate to continue with it. At every med check my heart beat faster, wondering if we had arrived at the point where the doctor would recommend not continuing with medication. Thankfully just before our eleven day road trip vacation extravaganza his dose was doubled and prescription refills granted for the next few months. I was so hopeful that we had found "the answer". I was so naïve to think it was so.

I have to say I signed a tremendous sigh of relief when I knew that we would have a higher dose of medicine for our great family getaway. Because my pre-medicated son would have hated everything about our vacation. He would have hated the uncertainty of the drive. He would have hated the lack of schedule (in fact, he would have hated summer in general for the lack of schedule alone). He would have hated going to restaurants. He would have been paralyzed by the thought of which rides to ride at amusement parks. Tears would have been shed. Hearts would have been wounded. He would have tried to control each of our decisions. He would have missed home and the cat and he would have been miserable. My husband and I counted our blessings, and then watched as we saw anxiety try to push through the medicine and pull my son under again.

We arrived in South Carolina the day after Hurricane Arthur vacated. We were lucky. But Rip Tides remained, and they terrified my son. The girls...not so much. But him...he spent every second that he was in the ocean, not jumping waves or body surfing, but instead pulling his little sister "to safety." He demanded we spend our days at the pool. And honestly, it was easier there anyway because holy we did. Once the threat of being sucked out to sea diminished, we ventured back to the ocean. After all...we drove umpteen miles and so many hours to play ocean-side...not pool-side. We had one good morning, and then during an evening stroll met a man who had hooked a baby Black Tip Shark. Or Black Finned Shark. Or Some Kind of Shark (perhaps the evening stroll along the beach had been preceded by many Coral Reef Splash drinks??) Either way the next morning was met with more demands for the pool. Because, and we should have seen this coming, the kind fisherman who let my kids pet the Something-Something Shark also casually mentioned that "if there are babies out there, there are also mamas out there." Plans finalized. Pool vacation it was.

Since we have been back we have had another med check and it took all I had in me not to bring up how I felt my son was once again spiraling downwards. I really do not want to entertain the thought of an increased dose yet. But there are times where I feel him slipping. Succumbing. And I'm scared and sad.

While his medication initially allowed my husband, oldest daughter and I to spend two days and one night away from home hiking Mt. Katahdin, even the higher dose is no longer able to usher him through sleepovers at his grandparents.

Where his medication has provided him with a more sound sleep and I can now kiss him goodnight and not wake him up, (before the slightest touch would cause him to wake), he still wakes in the middle of the night roughly four times a week. Thankfully the medication has him in a place where he is able to fall back to sleep with relative ease (provided his father or I are next to him).

While his medication has allowed us to breathe again as parents, and as a family, we are learning that any sort of discussion regarding change...or me taking a vacation, or him going to college, or his sister going to college, or his cousin going to college is enough to allow anxiety to regain control of my child.

While his medication has not protected him from hurt feelings or feeling intensely inadequate in comparison to his friends, or those he looks up to, I am so thankful that medication has allowed the relationship between my son and his older sister to re-blossom. They used to be so close. So. Close. For years I chalked their increasing distance up to a boy/girl dichotomy. They could not find common ground because they were so inherently different is what I told myself. But since being on medication, I am in awe of the change between those two. They do have common ground. They can have a conversation.  They do like spending time with each other, and value each other's friendship and trust. Years of hurt feelings have been repaired in just a couple of months. And while I am so thankful, when I catch them playing together, or chatting over Harry Potter, or asking the other's opinion, I can't help but kick my own ass for not pressing therapists and advocating for bigger interventions years ago.  Yes, bickering and yelling and tattling still happens. And there are times when I want to throttle them both, but I can clearly see their love again. And for a while it was so one-sided. My son has always idolized his big sister, but for far too long she had a hard time...I don't even know what the word is. But she had a hard time with him too.

Ultimately we have learned that we can never let our guard down. We have learned that he takes the safety of his little sister as a threat. We know that when he begins to amass an arsenal of Nerf guns and plastic swords in his bedroom, or when he insists on sleeping with a "weapon," that we better figure out what he is thinking about, or what he has been exposed to. He struggles still to articulate his feelings, and we know that when he starts to unravel at any given time in a day, we need to quickly backtrack and try to eradicate the source of stress (be it a conversation, an activity, a show, a chapter in a book, a news clip).

As parents we have to be intuitive and smart and calculating about what we say in front of him, because we do not want to exacerbate his level of stress. We can not talk about moving. Or my husband's tenuous job situation. Or celebrating my 40th year and our 15th anniversary via an adult only weekend getaway. We can not talk about maybe taking the same weekend hike with him when he is in fifth grade. We can not talk about school. We have had to make a plan for school that includes homeschooling this year, if the first thirty days don't work out for him. We do not expect completely restful nights. We are very, very careful about what responsibilities we give him.

While his medication has allowed us to restock our patience and breathe easier, the wounds are still so fresh that when he has a bad day I immediately think the worst. Immediately I am in the place of "worst case scenario," telling my husband that this isn't working. None of it...the medicine, the therapy, the bazillion hugs that he requires in a day...none of it is really working. I can not ever pull myself from thinking of his future self. I worry about how bad this could get for him.

This learning curve is steep. It is fluid. It is not fun and can be exhausting and frustrating. There is no stopping anxiety. There is only a pause. Perhaps a mute for a couple of days or weeks. There is only coping. Not a cure.  

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