Wednesday, July 29, 2009

Hitting Home

In my journey to help my son heal, and to understand his behaviors, the effects on our family, and learn how to address them, I've read tons of books. My search for answers has been a long and expensive one. is bookmarked on my computer! I could probably earn a psychology degree by now, for all the information I have digested over these last few years, most from reading books and online articles.

Once in a lifetime though, a book may come along that will ring true and change your life. The Papalos' book, The Bipolar Child, was such a book for me. Every paragraph and nearly every chapter I read, from cover to cover, had me repeating to myself, "Oh my God, this is my child!" It was as if the door had finally opened and SOMEONE understood and acknowledged what we live with everyday. It has a name!

Childhood Bipolar Disorder.

With that revelation though, also came nearly paralyzing fear. This is not simple ADHD or anxiety or adjustment disorder as was previously diagnosed. We aren't going to Ritalin or therapize this away. This is a full blown psychiatric disorder, that can cause children, sadly, to take their own lives, and the younger age the symptoms manifests, usually the more severe a disease it is and will become.

We have finally found a psychiatrist who treats children with mood disorders and willing to, conservatively, try out mood stablizing medication. It's already been a long rough road searching for an answer. It may get even longer. And rougher.

While we wait, watch and wonder if our son's life and our family dynamic will stabilize, it's helpful to reaffirm some things that we already know, but sometimes forget as we are walking on eggshells and shielding our son (and ourselves) from the disapproval and ignorance of the world as best we can.

We might suffer alone, but we are not really alone. Here is an excerpt from a newsletter written in honor of mothers and fathers of bipolar children. For those of you who wonder what it must be like to parent a bipolar child, or parents of bipolar children who feel as if NO ONE understands, the Papalos have once again, hit every mark. This is our life. Is it yours?:

  • Look at a very young and much-loved child with a nagging fear that something is seriously wrong.
  • Feel the external world bearing down on them, advising them to take multiple parenting classes or to tune into Nanny 911. Feel infantilized and ashamed as people offer up criticism and advice.
  • Accept that they need help from a professional, but feel a stranglehold of fear.
  • Come to learn that there are only 4,101 child psychiatrists in the entire United States--many wary of making this diagnosis.
  • Receive multiple diagnoses such as ADHD, OCD, ODD, PDD, anxiety disorder, or simple depression.
  • Come to accept that the child has a very serious psychiatric illness and make the agonizing decision to begin a trial of medications (if they can find a psychiatrist who can treat their child, or who has open hours).
  • Read the package inserts of medications which list possible side effects, as well as frightening black-box labels, and watch apprehensively for any signs of serious trouble such as lithium toxicity, tardive dyskinesia, Stevens-Johnson syndrome, new-onset type-II diabetes, or pancreatitis.
  • Attempt to explain to a child how the doctor is trying to help and what the medications are going to do; subsequently they watch their child experience distressing early side effects that include nausea and diarrhea and severe drowsiness; or worse, the paradoxical effects that produce the opposite reaction of what the drug is being used to treat.
  • Deal with the disillusionment of a failed medication trial and explain to that child why those pills didn't work and tell him or her: "We're going to try something else," knowing that they may have to repeat that phrase a number of times and thus begin a new round of side effects.
  • Have to get a child who has a needle phobia to a lab for a blood draw to determine drug levels. (This experience alone could turn one's hair grey.)
  • Watch children's weight balloon upward and their self-esteem plummet as they take certain medications that can be very effective, but that may also cause weight gain.
  • Become an all too familiar face at the pharmacy, experiencing shock at the cost of each prescription.
  • Have to suffer the ignorance of people in the media, who--in a cavalier manner--discuss over-diagnosis and over-medication. Moreover, these parents hear certain clinicians in the field publicly utter insulting sound bites such as: "This is an easy way for parents to let themselves off the hook;" or "This is simply the diagnosis du jour."
  • Have to listen to the word "No!" from a child one hundred times each morning, but be unable to assert the parental "No" as it will predictably trigger a meltdown.
  • Suffer the physical abuse of a child raging out of control, and experience crippling shame because they can't manage their own child.
  • Are set adrift in a house that has become a war zone.
  • Deal with feelings that alternate from extreme anger at the child to the most unbelievable yearning to help that child, from anger at the outside world for failing to realize what is happening to them, to exhaustion in trying to deal with the child with some modicum of equanimity.
  • Become perplexed that their child often does well in the outside world, only to return to the safe harbor of home to rage at a parent (most often the mother), leading to the suspicions of outsiders that "Something must be going on in that household, and with that woman;" or "She seems so nice, but you never really know people;" or "He can keep it together at school, so he must be a very manipulative kid.
  • Have to mount a siege each school-day morning simply to get a child suffering a sleep/wake reversal up and out to school.
  • Hesitate to answer a phone, afraid that it will be the vice-principal in charge of disciplinary action calling to report an "incident" at school.
  • Come close to earning a degree in educational law so as to work with the school system. Keep in constant contact with the teachers and psychologist or aide in order to assess what's working and where yet another accommodation may help.
  • Waylay careers and reduce household income so a parent can stay at home to deal with the child and spend hours at doctors' and therapists' and tutors' offices.
  • Experience the heartbreak of knowing that their child is rarely invited to birthday parties. Conversely, if he or she is invited, the event might be overstimulating thus provoking some kind of meltdown, and effectively putting an end to any such celebrations in the future.
  • Fear that their child will become aggressive with kids on the playground or in the neighborhood, thus earning disdain and a cold shoulder from the other parents.
  • Want the world to understand, but fear that the stigma will further isolate the child and their family.
  • Attempt to explain the almost inexplicable to the siblings, and to help them cope with the chaos in the household. Feel overwhelming guilt that the family is always fractured as one parent goes to a soccer game while the other stays home with the unstable child; or that a rare dinner at a restaurant devolves into an embarrassing, abruptly-ended event as parents race the child and siblings home and away from disapproving diners.
  • Are paralyzed if a child becomes manic and hypersexual and says inappropriate things or makes inappropriate gestures.
  • See their marriages become shaky as the stress of coping with this illness leaves parents little time to relate to each other and most conversations begin to center around the problems of their ill child.
  • Listen with horror as their child screams, "I don't want to live anymore;" or "I'd be better off dead."

Friday, July 24, 2009

Welcome to Bipolar World

I was a basket case giving him the first dose yesterday, and had to have moral support (a friend on phone, and support group online) to even pop open the blister pack and put it in his mouth. I cannot believe that a person with such pharmaphobia (is that a real word?) like me has a child who has to do this med experimenting thing! My stomach was in knots and I couldn't eat all day. I am so afraid of doing something that is going to harm him, in order to help him. :-(

It is a titiration dose of 25 mg for two weeks, and then 50 for two weeks, up to 100 mg of Lamictal (anti-seizure med off label for bp in children) we are trying, so shouldn't have noticed much affect at all, but it was there within about 3 hours. The affect I noticed was somewhat labored/deliberate speech, and him wringing and rolling his hands absent-mindedly a few times when he was watching TV, and lots of crazy giddiness otherwise. NO aggression or opposition or conflicts with anyone or depression/sadness/anger, but lots of silliness and some immature behavior that looked nearly manic to me - just without the anger and agression. More like an immature 7 year old, which is strange as Dallas normally comes across as a 17 year old in a 7 year old body most of the time. He did tell me that the medication made him feel "fantastic" and "the best I've ever felt". But he was almost drunk-acting but no slurring of speech or balance being off. His memory was not working well either, but being disciplined was met with a normal response from him, rather than opposition. The main thing we need to watch out for on this med is suicidal ideation or actions, mania, ticks, and a rash that can sometimes be fatal in rare cases. Ugh...

Can I say again how much I hate giving him meds? I hope this one, and a new rx for possibly Strattera (non-stimulant) by the time school starts will be all he needs to feel normal and function normally. Last night, he slept through the entire night without waking, and is still asleep now at 9:40, but didn't go down until almost 11 pm.

We likely won't be able to see an endo for months for the newly-discovered hypothyroid issue. It's appalling, but his endo needs to be a pediatric specialist, and there are two in our entire region, and both backed up for up to a year with appointments.

Today's a brand new day. We'll see how it goes...

Wednesday, July 8, 2009

Season of change

It's been over a month since I last blogged, and it's an overwhelming task to try and play catch up, but I'll do my best.

The pressure of school is over, and boy what a change in my son from just a month ago! His behavior has begun to look "normal" and he is happy most of the time. It may be just a coincidence and timing of his mood cycles, but my instinct tells me it's more than that. It's as if he's turned an emotional corner of sorts. He is after all now 7 years old, and "mature" as he likes to say.

We celebrated his 7th birthday on June 20th with a bowling party with 8 of his best friends and our extended family, and even a few neighbors joined in. He made a special request that I bake him a "Florida Gators bowling cake with a bowling ball on top". Do what? I am most definitely NOT a baker by any stretch of the imagination, but I did my best. It took me 5 hours. Did I mention I am not a cake baker?

He loved it and that's what mattered.

Dallas is also swimming like a fish this year, and has begun trying to dive... err.. belly flop. He no longer has any fear of the water. We may have another Michael Phelps on on hands!

However, the best part and biggest change is that he can just chill out and enjoy the summer for the carefree time is is supposed to be. Once, where without any structure, he completely fell apart, he is now able to thrive and be flexible. And also relax a bit...

Fourth of July, however, was too exciting for words. Dallas was all about the fireworks. Obsessed by fireworks. My husband tells me it's a "boy thing", and that we aren't raising a future pyromaniac. I guess he'd know, since he spent way too much money of fireworks himself, and it was like watching TWO excited boys, instead of one.

One of the biggest changes however, is that we took him completely off his ADHD medication. It wasn't without worrying about how he'd cope (and us as well) but he's done GREAT. His attention span isn't too great, and we often have to repeat ourselves 3 or 4 times, but his behavior has been manageble, and he's not been so impulsive as to be a danger to himself. Well, not so far anyway.

The other really big change, is that he's begun to cry when his feelings get hurt or he's sad. It sounds like such a simple, normal thing that kids do (and most parents try to prevent the tears!), but for Dallas, it's a huge, positive thing. At first, we were very concerned that he was going into a deep depression cycle and the new-found crying was a warning flag for that. But as time has gone by, we realize that he's instead begun to be able to identify and express appropriate emotions that match his feelings... and feel safe enough to CRY. Understanding his own feelings and emotions has been a 3 year struggle for him, but we do believe he's finally turned a corner. He never even cried about being taken into foster care or losing the people he loved. He confused "mad" with "sad" and it's been a difficult, often volatile journey for him, and for us.

We are so incredibly proud of how far our son has come on the road to healing!