None of this excuses us from caring for the poor and homeless around us. But I am reminded that our job is just as big as the one this wonderful family undertook in this movie, and it will go on much longer perhaps. I just wish I had the huge financial resources this family had! That would make things a lot easier at times.
About our Daughter
I am mother to four wonderful daughters, ages 17, 19, 21, and 23, and wife to the greatest husband on earth. God has given us a special child to raise one who was diagnosed with early-onset bipolar disorder at the age of seven, though she showed signs of it from the age of fifteen months. She also has ADHD, Sensory Integration Disorder (sensory seeking), Dyslexia, and Non-Verbal Learning Disorder-NOS, all typical comorbidities for a bipolar child. In spite of the trials, she enjoys lacrosse, running (finished her first marathon in October of 2014!), and reading and writing her own books. I will share with you the many joys and sorrows we have faced and will face in the future with the hope that you may find better understanding about this mental illness caused by both chemical and structural abnormalities in the brain. I desire that you will be encouraged by this blog if you are also dealing with a bipolar child. Thank you for reading and sharing in our journey.
How Did You Know She Was Bipolar So Young?
I wrote a long explanation of how we came to this bipolar diagnosis in a child so young under my post of March 19th of 2009. If your child or a child you know bears similarities, please seek out a good psychiatrist and don't wait for "things to get better." Often they will simply get worse, and the longer a child is unmedicated, the more damage their brain can accrue. Early diagnoses and treatment are key to providing these children with a chance at a successful life later as a teen and an adult.
Tuesday, March 30, 2010
I just saw the movie "The Blind Side" yesterday. Half of my family had seen it before in the theaters and loved it. Of course, I thought it was wonderful, and definitely one to buy so we can watch it over and over again, like "Facing the Giants." But whenever I see a film like this, involving someone going completely out of their comfort zone to care for someone so different from themselves, that intimately, that profoundly, I feel a sense of guilt, like many would no doubt, that I am not down in the projects near our house, rescuing kids in a similar fashion. But then it struck me that we are doing that, in a way. We are WAY out of our comfort zone much of the time in raising a bipolar child, who is often viewed as an "outcast" by both her sisters and by her peers, and by society. She has needed and will need intensive help in all areas of her life, academically, socially, psychologically, and spiritually. We have had to sacrifice financially for her well being, by sending her to private schools, and for tutors, and lots of camps to give her structure in the summer. We have had to sacrifice many of our own social desires in order to have peace in our home. I can't tell you the number of family or friend events we have had to miss because of Caroline's illness.
Posted by Megan at 11:12 AM
Monday, March 29, 2010
Well, unfortunately our dear doctor friend diagnosed Caroline this morning with a growth plate fracture between her fibula (?) and the top of her ankle. So that means a cast for six weeks and no lacrosse! It seems to happen very often that just when things start to go really well for her, something happens to throw a wrench in it. She has a good attitude about not finishing the season, thank goodness. Spring break at the beach should be interesting though.
Posted by Megan at 11:45 AM
Saturday, March 27, 2010
Caroline said this morning that she is having double vision or blurred vision. We are wondering if too much Lamictal is to blame. She is on a fairly high dose, 425mg, so we may need to back her down slowly. Lab work on Monday may also help to pinpoint the source. High blood sugar can cause blurred vision, and since Seroquel has been implicated with causing diabetes, we have to keep an eye on this. We should have had the labs done over a month ago. My fault, really, I just couldn't seem to squeeze yet another appointment in, but that is a lame excuse.
Posted by Megan at 12:55 PM
Friday, March 26, 2010
I found another great-looking camp for bp kids in Walnut Creek, CA, called Camp Opehay, run by the Youth Bipolar Foundation of Northern California. The camp seems to be a weekend-only camp for kids up to age 17, who are relatively stable and functional. I put the link under my Great Websites/Resources tab below.
Posted by Megan at 11:00 AM
Wednesday, March 24, 2010
I have had many questions and comments from readers asking about their child's symptoms, medications, and what sounds to me like a possible misdiagnosis of ADHD when their child may very well have early-onset bipolar disorder. I am going to list the similarities and differences below. No one but a very good psychiatrist can make an official diagnosis of your child, and sometimes they can be resistant to the bipolar diagnosis, as I have seen many times. This is just something that you may find useful to try to figure out your child's behaviors and seek the right help. I have summarized these lists (there is more) from "The Bipolar Child" by Dr. Demitri Papolos, and you can find this information in chapter 2 of the third edition.
A Child with ADHD:
*Child cannot focus on details, makes careless mistakes on classwork
*Cannot keep attention during tasks or playtime
*Seems not to hear you when addressed, doesn't listen well to instructions
*Doesn't complete assignments or chores in the allotted time
*Disorganized at home and at school
*Hates homework, can't do it without a struggle
*Always losing their "stuff"
*Immediately distracted by external stimuli
*Fidgety: tapping fingers, kicking feet, humming all the time
*Always on the go, can't sit still for long
*Very impulsive: interrupts conversations, cuts in front of lines, can't wait for others to have a turn, grabs things without asking
*Chatterboxes: want to tell you everything they are thinking all the time
*Often extremely bright, but their grades don't show it because of missing assignments, bad tests, etc.
*Sometimes, even frequently, can be explosive and angry (the "ring of fire" ADHD.)
A Bipolar Child:
*Also explosive, irritable, and has fits of anger, BUT in contrast to kids with just ADHD, will punch holes in walls, doors, try to hit you, bite you, do physical damage to house, and sometimes to others.
*Hypersexual: you may catch them masturbating a lot, or trying to view porn, playing "doctor" with siblings or other children
*Unbelievable temper tantrums that last a LONG time (I frequently called my husband to come home from work to help with Caroline when she was 3 or 4--I couldn't handle her!)
*Sleep issues: waking up in middle of the night and not being able to fall back asleep, etc.
*Often way too "rough" on the playground
*Always imagining battles, playing super hero, to the point of even jumping off of the top of jungle gyms, roofs, etc.
*Obsessive thoughts that are often morbid in subject
*Tunnel vision: get an idea in their brain and cannot let it go, usually "missions" like building a fort, making "potions," needing a certain pair of shoes or item of clothing or toy right now or they act like they will die (huge temper tantrums if denied, even if very unreasonable.)
*Irritable all of the time, snap easily
*Racing thoughts, and speech
*Seem unafraid of very risky actions
*Crave carbs, and will hide them in their rooms
*Compulsive lying or fantastical storytelling
*Aggression, often taken out on siblings and parents, not necessarily peers or teachers
*Disorganization in schoolwork and their room, get overwhelmed by homework because they can't organize it or break it down into smaller pieces
*Suicidal thoughts, expressions
*And other symptoms like tics, learning disorders, hallucinations, both auditory and visual
*If put on an ADHD stimulant med alone, or an antidepressant alone, will react very badly by entering into full-blown mania, often needing hospitalization if not caught early enough
As you can see there are some similarities between ADHD and bipolar disorder, but also some BIG differences. Our daughter experienced all of the above bp symptoms, and still does, but all of these are greatly lessened when she is on the right mix of meds. Of course, a child can be both ADHD and bipolar, which is the case with Caroline, and many bipolar kids. Most bipolar kids cannot tolerate ADHD meds. Also, they can have OCD with bipolar disorder, as well as a number of other neurologically based problems, like Tourettes, Aspergers, Oppositional Defiant Disorder, Conduct Disorder, and sensory processing issues. Even something like a brain tumor can produce bipolar symptoms, so it is so important to get a thorough work up by a well-informed psychiatrist, one who doesn't dismiss your concerns but really listens.
I hope this might help someone who is wondering if their child is possibly bipolar, or who has been told they are ADHD, but are not responding to ADHD meds, perhaps getting worse. Don't "wait and see" if they are on an antidepressant alone and acting strangely--our child nearly killed herself at the age of seven because we waited to see if she would act more normal. Trust your instincts!
Posted by Megan at 7:01 PM
Caroline badly twisted her ankle yesterday evening while practicing lacrosse. Today her ankle swelled up to twice it's size, so I decided to take her to the ER to make sure it wasn't broken, which I was highly suspicious that it was. If it was broken, she wouldn't get to play lacrosse for the rest of the season like she had been waiting for since the fall. She was pretty worried. But, on the way to the hospital, she surprised me while she said outloud to herself, "God has a plan, God has a plan..." and "It's okay if I miss the season. God might have other plans for me..." I was amazed at her faith. Most adult Christians don't have that kind of trust in God's sovereignty. thankfully, the ankle is not broken, just a bad sprain, so with two weeks of rest, she most likely can finish out the season. I am so grateful!
Posted by Megan at 6:48 PM
Tuesday, March 23, 2010
This is a great ministry to handicapped and otherwise challenged teens. Check out the Young Life link under the Great Websites tab on the right of my blog. We used to be on staff with Young Life and I can attest that YL is a GREAT ministry with lots of integrity and compassion for ALL kids!
Posted by Megan at 12:50 PM
Monday, March 22, 2010
Just a note for those who are interested: we have tried neurofeedback therapy with our youngest child who has severe ADHD. The way neurofeedback works is that electrodes are place on the head which run to a computer that allows the child to literally play video games with their EEG brain waves. When the child used the "good" brain waves (calm, happy, positive), they can control the game and do well. If they are using "bad" brainwaves (anxiety, stress, anger) the game won't work. I observed this and it is really true. This therapy is covered by some health insurance and costs about the same as regular psychotherapy sessions. If your child is presently seeing a psychologist who does not do neurofeedback therapy, and you want to try it with a psychologist who does, you would have to switch temporarily until the feedback therapy is finished (something like three months or so) because most health insurance will not cover both types of therapy at the same time. We had to do the temporary switch. I would say we were starting to see differences with Mae (even with her stuttering, which has improved a lot), but her therapy was interrupted by Caroline's setbacks a few years ago, so we didn't finish it. I would like to restart it this summer.
As far as bipolar kids, I was told by Mae's therapist at Dr. Parker, Schlichter and Associates that it doesn't work very well for bipolar disorder. However Dr. Parker's neurofeedback website says that it can be used for bipolar disorder. I will have to ask him about that.
I have placed a link to our psychiatrist's neurofeedback information, and obviously there are many across the country, but I liked the explanation on this website about the therapy and which disorders it can help.
Posted by Megan at 11:43 AM
Sunday, March 21, 2010
Caroline really has to go to school this week because they have standardized testing all week. She seemed a bit better today, calmer. I hope this Lamictal increase and the Amantadine holiday have their desired affects. We shall see. She slept all night and really all morning until 11 today, after her first lacrosse game yesterday. I think she was worn out by both hypomania and the game. I am tired too. Goodnight.
Posted by Megan at 10:05 PM
Saturday, March 20, 2010
Today has been a crazy day for our family: soccer game at 10, lacrosse game at 3, ballet rehearsal at 1, SAT prep class at 1. I think everyone woke up stressed out, and my oldest Elizabeth was stressed out by the SAT class she doesn't want to take ("all my friends are at the beach, this is so unfair!") and because I told her she HAD to clean up her room until it was spotless. Caroline was stressed anticipating her first lacrosse game of the season, and she is still acting hypomanic, and Jane gets stressed when the house and particularly the kitchen get messy, which happens on Saturday morning between pancakes, frantic searches for uniforms, leotards, etc. Mae seemed to be in her own happy ballet dream world so she wasn't a problem. I am stressed because I forget to take my Lexapro yesterday and today, apparently. I always know that I forgot to take my antidepressant when I start screaming at the kids, really screaming, no self-control at all. Then I think "uh-oh, I forgot something!" The first signs of depression for me are uncontrollable anger, and severe anxiety. Awful feelings, and not great for parenting, or loving one's husband.
Well, while Bill and I were at Jane's first soccer game, Elizabeth, the oldest, and Caroline got into a huge fight (should have insisted that Caroline come with us to the game) over who owned a particular item of clothing. I had made the mistake of labeling it with a permanent marker as Elizabeths when it was something that Caroline had bought with her own money. My bad, again. I get a call from Caroline who was VERY upset. I should have been home during the game, or one of them needed to not be home with the other. They just can't be left together, which I want to optimistically believe they can handle. Not so much.
The worst part of this fight was that Elizabeth lit into Caroline using the word "bipolar" which Caroline is HIGHLY sensitive about when used against her. She went crazy. I had to put her in the car to calm her down. Both of them had been really ugly and immature with each other, but Elizabeth cannot throw "bipolar" at her to be ugly. It is too hurtful and produces the most pained reaction in Caroline that we see. She must understand that.
Caroline really wants to be friends with Elizabeth, but Elizabeth, sadly, rejects her attempt again and again. We are very sad and concerned about this. We want our girls to be friends as adults and to be there for each other, like I am with my three sisters. Painful for us to watch.
But God is a redeemer of the ugly, the broken, and the hopeless.
"For I know my Redeemer lives!" Handel.
I believe God can redeem the most messed up parts of our lives and bring beauty from ashes. I have seen Him work in ways that still surprise my unbelieving heart.
Posted by Megan at 1:39 PM
Friday, March 19, 2010
We leave in two weeks for spring break vacation at the beach, and I began to think that I would rather increase her Lamictal by 25mg, than just count on the Amantadine holiday and the Progon to work fast enough. I don't want to waste the money we paid for the vacation rental if Caroline can't be stabilized before Easter. The psychiatrist said we could go up on the Lamictal if needed (to 425mg.) So she is going to get the higher dose starting today. We can certainly decrease it after a few weeks to see if the Progon is doing the trick. At least with mania she is usually too "happy" and "busy", and not suicidal and depressed as at the other end of the spectrum. Sounds weird, but I would take mania over the opposite, having been through many episodes of both. The depression is far scarier.
Spring is absolutely my favorite season of the year. Watching the birds gathering nest material is so fun. We have a lot of nesting trees and bushes in our yard, so we have a ton of birds to watch. The cherry blossoms and the bradford pears are almost in bloom. This season is a reminder of the beauty that comes after storms, trials, and darkness. A season of hope, renewal, rebirth, and peace. A reminder of the love God has for us through the gift of his Son.
May you be blessed with peace, if not in your home, then in your hearts!
Posted by Megan at 8:16 AM
Thursday, March 18, 2010
I had to pick Caroline up from school about an hour and a half after she got there because she was simply too agitated to be there. We have been seeing an escalation in her anger toward the boys at school. She keeps saying that it is their ceaseless noise and perverted remarks that are making her so mad, but she is definitely still "up" there. And she has been sassy at home, unduly obsessed with her novel, and having trouble sleeping. Luckily, the psychiatrist was able to squeeze her in this morning, and we decided to address the mania with two med adjustments. One, since we didn't give her the 48 hour Amantadine holiday last weekend like we should have, we will do that immediately. She does get very agitated if she is on Amantadine too long without a break. Our bad. Secondly, instead of increasing any of her present meds, we are going to put her on the natural progesterone replacement pills (Progon from NeuroScience) because her progesterone is low enough that her estrogen is much too high, and her testosterone is too high. This would explain the hard to control acne, her very heavy periods, and her irritable mood. We will try this and go back in a month. Then we will try to CalmPRT (NeuroScience again) at that time to reduce the cortisol she is putting out (lab work showed this). We are doing one supplement addition at a time so we know EXACTLY what is causing what reaction, unlike we did a few months ago. I hope these two steps will help her back to "normal." We probably won't send her to school tomorrow. I am SO glad her school is so patient and understanding about her absences!! There are very few schools that would give her this much leeway.
Posted by Megan at 12:00 PM
Wednesday, March 17, 2010
Caroline just told me that she has been feeling manic the last several days, having inappropriate thoughts, not sleeping well. This might explain the definite OCD-like attitude with the book she has been writing, her loquaciousness, and her sassiness the last few days. I am so proud that she decided to tell me that she was feeling this way without a big crisis making it obvious. Yay! She is growing in maturity all the time. I don't know which med we should increase, the Lamictal, the Trileptal, or the Seroquel. I will call her psychiatrist for an appointment and also see if I can get advice while we are waiting. She is on a high dose of all of those, so I am not sure what would come next medication-wise. Spring is such a hard time, as the body clock has to adjust to more daylight and then the DST ends too. Maybe she is on too much Lamictal now.
Posted by Megan at 3:14 PM
Tuesday, March 16, 2010
Caroline is writing a book. She can't stop writing this book. She is obsessed with it, and if she isn't doing homework, she is absorbed in the creation of this novel. It is an adventure/mystery story, with the lead characters being teens, of course. She is an amazingly descriptive writer, using complex ideas and sentences. The only problem is that I am having a hard time enjoying reading it because it starts with a teenage girl getting kidnapped by a group of guys (ok, there is one girl abductor) when she visits an abandoned shed. She gets tied up, knocked out, and is carried off to some other location, where she is pretty roughly handled during the first chapter. I guess being the mom of teenage girls, and knowing that kidnappings and murders of girls happen almost daily, I am probably overly sensitive to the topic. I didn't want to listen to Caroline reading it to me, and she was so excited about it. I just couldn't get into the idea at all. I wanted to encourage her writing gifts, but also wanted to steer her in a more positive direction, just for my own sake. Selfish, yes. But I do worry about the "dark side" of bipolar disorder with the fixation on the morbid. She did change the tone of the rest of the book, but I feel badly that she doesn't have the creative freedom that I would like her to have. I know that if she chooses to become a writer vocationally that I won't have the power to influence what she writes, but for now, if I can, I am. I am not sure this is right, but it is what I can handle. And maybe there is guidance needed in terms of what is healthy for her to be dwelling on and what is not.
Posted by Megan at 10:09 PM
Monday, March 15, 2010
Waking up an hour earlier when DST ends is hard for most of us. For a kid with bipolar disorder, where sleep is often an issue anyway, this change is brutal. She is still asleep, after we tried waking her several times, at 10:00 on a Monday morning! She couldn't fall asleep early enough last night to wake up on time today, and I guess the lost hour in getting up earlier for church yesterday too has taken it's toll. I wish they would do away with DST!
Posted by Megan at 10:04 AM
Friday, March 12, 2010
I just found that amantadine is being used on a trial basis by a Harvard medical school doctor as an ADHD drug for his patients. His name is Dr. William Singer and he has had very good results in his studies. I can completely believe this, as Caroline is far more focused on amantadine than she was on any stimulant, which she could never stay on anyway because of mania. Her ability to "do school" when from zero to spectacular within the first week she was on it. She has continued to do amazingly well academically, as she hasn't in years.
Posted by Megan at 5:59 PM
I dropped off my homeschooled 12 year old at my younger sister's house today and had a day off, to myself. It wasn't everything I had hoped (rainy, dark, depressing day and then my 16 year old came home from school early because she was sick) but it was a start. I spent three hours this morning shredding papers, and throwing away piles of paper trash. I've been doing this on and off for two weeks. Yes, I have a LOT of catching up to do after years of being in crisis. I am trying to take advantage of this "lull" and organize my out-of-control clutter. Then I can do the taxes, oh joy. The next day "off" I want to go to the spa and get a pedicure, and maybe do some spring shopping for myself. Maybe coffee with a friend. Truthfully I don't like the sound of a completely empty house, after having children at home continually with me for almost 16 1/2 years, but to just focus on my projects is healing. I would LOVE to have about two weeks by myself in my house alone to just go through all of the girls' rooms, the attic, my own room, and get rid of about half of our belongings! I moved every three years or so while growing up as a military brat, so my parents could never accumulate what we have accumulated in the last 17 years of marriage and kids!
Posted by Megan at 5:48 PM
Thursday, March 11, 2010
Since so many have asked, I think the Intuniv is still a great drug for our youngest, Mae. She is much calmer and gets her homework done more quickly, and wakes up in a much better mood. I can tell when it wears off in the late evening, though, because she becomes very grumpy. But she is also really tired from school and ballet so sometimes it is hard to know. I do know that my oldest was just awful on a stimulant when she was younger, very irritable, never smiled, not the same kid. I wouldn't say that Intuniv has affected Mae like that. I think she is moody partly because she has a lot of learned bad behaviors from years of dealing with a bipolar sibling! She wants to be the diva, but she has no excuse. We did baby her too much while Caroline raged through her elementary years. Life was crazier then. Now it is better and we are trying to "un-diva" Mae so we can all have some peace.
Posted by Megan at 8:42 PM
Amantadine is an old drug used for several things, one for Parkinson's and the other as an anti-viral. Some psych docs have been increasingly using Amantadine with bipolar kids and other kids with various mood disorders because it somehow allows the limbic part of the brain (emotions, passions, anger, elation) to communicate better with the thinking/reasoning part of the brain. That is a layman's explanation. Our daughter was put on it at Meridell Achievement Center last summer where she stayed for a few months. I know a number of other kids who are on it with good results for controlling outbursts, anger, defiance, etc. It has been a wonder drug for our Caroline.
Posted by Megan at 1:25 PM
Wednesday, March 10, 2010
With airplane tickets way too high right now, we decided to cancel our Destin, FL reservations, which would have been a 20 hour drive, and go to Hilton Head, SC instead, a mere 6 to 8 hours away. When you have a bipolar child, you can't push the travel thing too far. Oh well, Destin can wait.
Posted by Megan at 7:36 PM
Monday, March 8, 2010
Our health insurer, Tricare, has begun to send us a monthly statement listing our prescriptions, the retail cost, what they paid, and what we paid. Caroline's prescriptions in the month of January alone would have cost us, without health insurance, $4209.15! The most expensive was the Seroquel, over $1000. Now, some of those were 90 day prescriptions, but, you wonder, what do people do who don't have health insurance, or who are under-insured? We paid nothing for those prescriptions because we had already met our $1000 out-of-pocket catastrophic cap for the fiscal year that started October 1st. If my husband has to leave the Navy, we will really miss Tricare. I would have to go and get a job most likely, especially if if we had to pay for more than a small percentage of those drugs, because it would kill our living expenses. I am prepared to do that if necessary, but that would mean I would be that much less available to Caroline during the summer months and during those times of "crisis". Not a good thought. No drug should cost so much that you can't put food on the table. I am a conservative politically, but healthcare is a huge problem that must be solved for the millions who do not have the kind of coverage that we do! No one should go bankrupt because they must pay thousands of dollars for their prescriptions, or end up unable to work, have relationships, or just plain have a life.
Posted by Megan at 6:30 PM
In the past, Caroline has been difficult to keep in one school for an entire year. She hasn't had behavioral issues in school very much at all since she was 10, and usually the reasons for leaving had to do less with her behavior and more with the environment not turning out a good one for her learning style. This year she is the only kid in the 7th and 8th grade without a single demerit for bad behavior at school (including chewing gum) since the beginning of the school year. Way to go Caroline! A miracle really. It is good to have things to celebrate after years of heartache.
Posted by Megan at 5:10 PM
Friday, March 5, 2010
That would describe Caroline right now. She is stable and free of that awful stomach virus. She is so pleasant when the meds are just right. She turns 14 on Sunday. Tomorrow I will take her to a salon for a little pampering. She doesn't have any friends to invite to a party, but she seems just fine with a low-key family celebration. Every time I see the secretary at her school, she tells me how much she adores Caroline, how sweet she is, so pretty, always misses her when she is sick, just loves her. This is the real Caroline that we know too.
Posted by Megan at 6:46 PM
Thursday, March 4, 2010
One of my best friend's dad just passed away from melanoma. Tonight I went to his memorial service, and it was such a beautiful celebration of a life well lived. He has three grown daughters, and leaves behind an amazing wife. Hearing from his daughters and his sons-in-law, friends, and his patients made me think that this is what I want to pass on when I am gone someday, a legacy as he has bequeathed through his character. Not just survival, but having made a true impact on this world, on people, bettering the lives of others in many different ways. And I want my kids to be able to stand up and say that I was a loving mother who made mistakes but acknowledged them and wasn't afraid to be vulnerable. I want them to say that their dad was always there for them, no matter what, and that they wanted to marry a man just like him.
I imagined myself tonight standing on this very tall piece of solid rock, granite, immovable, but that all the rock around me was crumbling, not to be trusted for even a toehold. I was standing there alone, afraid, staring down. I hate heights. It was a long way down. But this rock that I was standing on was a representation of God's hand, His sovereign control in my life when all around me things crumble. Nothing can be trusted so well as His grace. Everything else will disappoint us eventually: our spouses, our children, our jobs, our investments, our material possessions, our leaders, our friends. Nothing is permanent, solid, and unchanging but the God who made this universe. Trials will come and can shake us to the core, but our hope is in a loving God who cannot be shaken.
Posted by Megan at 9:10 PM
Tuesday, March 2, 2010
Ugh! Caroline has missed school yesterday and today because she has the norovirus. She got so dehydrated that Bill had to take her to the ER on Sunday to get fluids. With all of the throwing up and diarrhea, her body was definitely not getting all of the meds she normally metabolizes, and she became very snappy yesterday. I am hoping that this will be the last of the winter viruses for her, and all of us, so she can actually go to school for one entire week!
Posted by Megan at 11:22 AM