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.
Thursday, February 25, 2010
A lot of you have questions about Intuniv that are beyond my ability to answer well. Please check out on my sidebar the Core-Psych blog by Dr. Charles Parker. If you click on that link, it will take you to his page and you can enter in "Intuniv" in the search box. You will see that he has done a whole series on Intuniv and has answered many questions. You can ask him a question there too and he will likely reply quickly. He is Caroline's psychiatrist. He knows so much more than I do about the chemical differences between Intuniv, Tenex, and guanfacine. Hope this helps!
Posted by Megan at 1:27 PM
Watching one of my bipolar friends living on her own, struggling so much with the consequences of acts done while manic or depressed (while on meds), has caused us to be very aware that Caroline may need to live with us or someone else for a very long time. Why? Because bipolar mood changes can start out so subtly, just a nuance of something different. And then, if someone isn't around you day in and day out, knowing what you are like when you are "normal" and being able to recognize clues that you are heading in one direction or the other, the bipolar person can end up making mistakes while manic or depressed that can cost them friendships, their jobs, their freedom (jail), their drivers licenses, their sense of wholeness, and their integrity and hope. Shame will follow them frequently as they review the damage they did while unstable, both to themselves and to others. I am not trying to paint a totally hopeless picture, but we believe that if at all possible, people with mental illnesses need daily contact with the people who know them well and can ask them the hard questions. There is so much that can go wrong and affect them in a way that changes forever what they can do in the future. We will do everything we can to help her have both a sense of personal choice as an adult, but with carefulness, and develop stronger boundaries for themselves than most people need. I will do EVERYTHING I can to help Caroline achieve her dreams, her goals unimpeded by costly mistakes made while unstable. We can't protect her totally, and we know that things can still happen, but not living on her own until she is really able to is one thing we want to instill in her.
Posted by Megan at 1:07 PM
Wednesday, February 24, 2010
Today we got a survey in the mail from Meridell Achievement Center, the RTC that our daughter went to this past summer. They send these surveys to former patients every few months, asking about whether or not their medications have been changed at all, if there have been any hospitalizations, or incarcerations (let's hope never!), and also about aggression, both physical and verbal. In particular, they want to know if her aggression has continued to be at a much lower level than before her stay there. The answer is a resounding YES! She used to rage a lot before she went to Meridell, and now it is almost never. She occasionally gets verbally sassy and mean toward her sisters, but so do they. What siblings don't fight? And like I said before, this is the first year that she has not been hospitalized in the fall or the late winter. Meridell's specialty is stabilizing kids who are very explosive and aggressive. I have to give them a standing ovation. Whatever they are doing is right on the mark.
Posted by Megan at 6:46 PM
Tuesday, February 23, 2010
Caroline went back to school on Monday and had a really good day. She went today and so far all is good. She is catching up nicely on her major research project due in March, on the history of comics in the US in the 1920s and 1930s. Interesting.
We are increasing her Clonidine to .2mg, because sleep continues to be a problem. The increase of the Lamictal to 400 seems to have solved the mania but isn't making her sleep better.
I am looking ahead to next year and really struggling to know if the kids should all stay in their present school situation, or if we need to makes some changes, especially for Caroline. I am just not sure if this is the greatest school environment for her. I am just praying for wisdom.
Posted by Megan at 1:04 PM
Monday, February 22, 2010
I just wanted to say how encouraged I am when I receive a comment about how much my blog has helped them in their experience with early onset bipolar or finding the right med for ADHD. I don't always comment personally right back, but know that I am glad you found me and I look forward to getting to know you and your struggles too. Blessings!
Posted by Megan at 12:09 PM
Sunday, February 21, 2010
Saturday, February 20, 2010
For those who are interested to know, Caroline's pdoc said that the Lamictal was most likely not the cause of the mania this past week, even the increase. Lamictal is a mood stabilizer so it wouldn't induce mania, but rather control it. Likely it was the antibiotic or she simply got into a bad sleep cycle which can always bring on mania. I am glad, because Lamictal has been a wonderful pseudo anti-depressant for her.
Posted by Megan at 3:38 PM
Caroline is finally sleeping all night, thanks to Clonidine. She is acting "normal" but VERY excited about the start of lacrosse today. Hopefully she will catch up quickly with her schoolwork. Now to help my 16 year old study for the SATs, while I am sick with a bad sinus infection. Today I would rather sleep!
Posted by Megan at 12:30 PM
Friday, February 19, 2010
Remember in the Sound of Music when Julie Andrews and Christopher Plumber sang "I Must Have Done Something Good?" She was bewildered that she should be so blessed to fall in love with such a great man, and mused that God rewarded her because of something she did right in the past. I don't necessarily agree with the theology (because God is often gracious to us when we are undeserving) but I do think that sometimes our best efforts pay off in the long term simply because doing the right thing is inherently good.
My husband has worked very hard to instill in each of his girls that they are beautiful, precious, important, and that when they mess up, he is still there for them. He writes each of them a Valentine's Day card, carefully thought out, all individual messages. I will share with you the Valentine's card that Caroline wrote to her daddy this year.
These last couple months have been a pretty wild roller-coaster with lots of mixed up emotions. All during that time you've been right by my side all through the storm and even when you think we've lost the battle, you should know we've already won the war. Thank you for always being there for me.
I love you always. Your Daughter, Caroline"
I know that at the age of 13 I did not have this kind of respect for my dad, or a strong sense of his love for me. I am so grateful for my husband's amazing commitment to his girls. He is a wonderful daddy!
Posted by Megan at 8:31 AM
Thursday, February 18, 2010
Caroline didn't sleep through the night AGAIN last night. How aggravating. Thankfully she has a pdoc appointment tomorrow. She takes two different sleep meds so I am wondering if she has developed a tolerance to one or both of them. No sleep means no school, obviously not a good thing. With hours of daylight increasing every day as the spring approaches, meds often have to be adjusted. I think of bipolar disorder as being very similar to diabetes. Treating diabetes is a constant balancing act. Treating manic depressive illness is also a constant balancing act, tweaking this and that as the seasons change and hormones change.
Wednesday, February 17, 2010
I think I left many of you with the impression following some recent posts that life with a bipolar child is difficult beyond my ability to cope. Just like bipolar disorder itself, there are ups and downs to caring for any special needs child. And the fact that we have four kids does add quadruple the work for mom and dad, anyhow. We wanted a big family and we consider each one to be a special part of our family, precious to God and to us. We would never trade Caroline for anyone else. There are things about her that are so unique, so creative, so sweet that she brightens my day quite often. She is one of my biggest cheerleaders. She tells Bill and I very often how lucky she is to have us as parents, that she is so blessed to be in this family, and that she loves us soooooo much. She is more respectful to me than my youngest, that is for sure. Since coming back from the RTC, she has gained a LOT more self-control over her temper and in all areas of her life. She is a very diligent student who strives for As. She has such a tender heart towards God and is quick to confess the things that she feels were unkind to me or her dad. I have GREAT HOPE for her future, knowing that the key to her success is three-fold: staying on her meds, sticking with psychotherapy for probably the rest of her life to deal with the complexities of bipolar disorder, and to trust in God's purpose for her life. There will be big ups and downs, and probably more hospitalizations, but bipolar disorder doesn't DEFINE her, as we often tell her. It is part of who she is but not the whole. She is so much more than the kid with the mental illness. She is a beautiful work of God's hands.
Posted by Megan at 9:14 PM
After doing some research, I discovered that some psychiatrists have documented cases in which of a certain class of antibiotics induced mania, even in non-bipolar people. The antibiotics in question are in the class of ABs that include ciprofloxacin, and oxfloxacin. We just started Caroline on a course of Doryx (doxycycline) which is in the tetracycline class of ABs. Now we are suspecting that even though Doryx hasn't been implicated that I could find, that it has induced mania in Caroline. She was prescribed Doryx for acne, but at this point we will have to go another route. We do recall that she seemed to get off-balance on even Amoxicillin and Augmentin. It is so hard to keep up with all of the possible drug interactions when she takes so many psychotrophic drugs! So we will see if she returns to "normal" when the Doryx is out of her system.
Posted by Megan at 1:32 PM
Unfortunately, mania has reared its crazy head again, and Caroline is manifesting the usual signs: sleeplessness, hyper-focused activity, hyper-sexuality, and non-stop chatter. We kept her home from school yesterday, and last night she said she again couldn't stay asleep. So I guess she will either go late or not at all. We have had very bad experiences with her going to school while manic. She loses all good judgement. Time to call the psychiatrist and ask what is next. I hope we didn't accidentally leave something out of the twenty four pills she takes each day. We do try to count them before handing them to her. I hate this stupid disorder.
Posted by Megan at 7:06 AM
Tuesday, February 16, 2010
The lyrics to one of my favorite songs in the world, by Jill Phillips. Even better is listening to her sing it.
So this is how it feels at the rock bottom of despair
When the house I built comes crashing down
And this is how it feels when I know the man that I say I am
Is not the man that I am when no one's around
This is how it feels to come alive again
And start fighting back to gain control
And this is how it feels to let freedom in
And break these chains that enslave my soul
I refuse to be locked up in here like a prison cell
Where all I ever get is a meal and four walls
I used to be just fine in here but not anymore
Gonna break through these steel bars
So tell me how it feels when the tables start to turn
And you find yourself at the losing end
Tell me how it feels, you're not welcome here
'Cause I'm tired of pain and I'm tired of sin
I won't let you win
I have no doubt
I don't want you in
So get out, get out
I refuse to be locked in here like a prison cell
Where all I ever get is a meal and four walls
I used to be just fine in here but not anymore
Gonna break through these steel bars...
Posted by Megan at 8:49 AM
I have very particular taste in music. I like two genres of music the best: totally fun and non-sensical, great-to-workout-to music (B52s, REM, Black Eyes Peas, etc) or really poignant, deep songs that speak volumes to my heart. The latter I have found mostly through Sara Groves, a little known Christian artist who is amazingly gifted in both songwriting and composing, kind of folksy, never minces words. The other is a band called Indelible Grace, which is committed to bringing back old hymns into our worship, often redone to fresh music. The old hymn writers are under-appreciated, and often the traditional accompanying melodies don't allow one to really digest the beauty of their poetry. To hear them redone with new melodies helps me to grasp the depth of their language. If you are interested in hearing either Indelible Grace or Sara Grove's songs, just go to Itunes and look them up. Sara Groves hits the nail on the head for me in her take on life on so many levels. I consider her to be a friend on the journey, cheering me on, reminding me of the beauty in the struggle.
Posted by Megan at 12:14 AM
Monday, February 15, 2010
Well, I wish I could say that this extended weekend, including Valentine's Day, went great, everyone had a nice break, etc. But this time it is me who is out of whack. I am so very depressed. I take anti-depressants, two of them, and lots of Vitamin D, but I have just slid into a very bad funk since Saturday. I did not want to get out of bed this morning, in fact I laid there for a long time, not wanting to see the kids or come down the messy kitchen from breakfast. When I did get up, I couldn't stop crying. Bill was home fortunately, and sweetly comforted me as I broke down. I cried for an hour and then retreated back to my bed until mid-afternoon.
Overwhelmed is how I feel. And it isn't even really because of Caroline, who is doing great. It is everything: from the state of my house, to the loneliness I feel and the dysfunctional relationships with some of my closest friends, to our tight finances, to being bored with this stage of my life, to the struggle I have constantly with feeling like a failure as a mom and a wife. I am probably a better mom than a lot of moms in the world, but it is very hard dealing with the repercussions of having a bipolar sibling played out in the personalities and behaviors of my other three non-bipolar children, which is sadly no small effect.
And there is the deleterious effect that raising a bipolar child has had on me. I am positive that I have PTSD from all of the years living in fear over what Caroline would do next, the school dismissals, the hospitalizations, especially the really bad ones, the feeling that I have so little control over my life in general as a result of being the mother of a special needs child. God didn't promise us a life where we would be able to have everything go according to our plans, but I do wish that I had some measure of control over the day to day stuff. I am interrupted constantly in my quest for organization and routine by the myriad of doctor appointments, psychology appointments, specialist appointments, dentist appointments, orthodontist appointments, pediatric appointments, taxi service for ballet, basketball, lacrosse, social events, as well as making time for people who want to get together with me, homeschooling and trying to do a decent job at that, crises that seem to pop up regularly with Caroline, and the list goes on.
I am weary, very weary right now of the craziness of my life. I feel like I barely have time to breathe. I think if I went out and got a full-time job and didn't get home until 5:00 each day I would escape so much of the household drudgery that I hate, but who would drive the kids to all of their practices and appointments? Who would be home during the summer when teens can get into a boat-load of trouble left to their own devices? Who would be home after school, during those prime hours when kids get into the most trouble without supervision? My kids would suffer. It is just a fantasy. If I could just get away for a me-time vacation, I would love that. I need that.
I think I am burned out. I am struggling a lot with feeling like I don't have the kind of authoritative role I need to have with my kids. I feel numb often enough that I frequently zone out when a child is misbehaving instead of dealing immediately with the situation. I don't resent Caroline for sucking us dry, it is not her fault. But I do wonder what God was thinking when he allowed her illness to present itself in such an unmerciful way that it has scarred my other kids and me and my husband as well. I have such awful memories of events I won't be able to forget.
I believe God is good, and that all things work together for the good of those who love him, but I don't always agree with his plans in the present. Not because I think He is wrong, but rather because I wanted a different life from the one He has given me, like the lives of my friends who have just two kids, no mental illnesses, no problems with paying for private schools, privileged to take family vacations several times a year, not worrying about how well one kid is going to do while traveling, whether you will have to cancel your plans because they are unbalanced.
I am not liking my life right now. But I don't want to play the victim card either. I have been thinking of the saying that if you don't like your life, then change it. I want to change it, but I feel somewhat paralyzed by the circumstances we are in. I want to say no a whole lot more often. I burn myself out fast when I volunteer for this and that or say yes to please someone else when I should say no. I am a people pleaser by nature, and that translates into resentment when my life feels like it is controlled by others, or my need to please them, or make sure they are "happy" and have what they think they need to be "happy." I don't deal well when I feel people are displease with me, or disappointed. I feed into other's addictions to their idols, when that is the last thing I really want to do.
I guess because I am 42 and life is looking much shorter than it used to, I am realizing that if I want my life to be satisfying, full of the things that really matter, both to me, and to God, then I must shake free of my prison of "shoulds" and decide to take steps towards my own healing and recovery. I made an appointment to day with a psychologist, one that my kids do not see, or that we have family therapy with. I felt I needed someone just for me, to talk about my struggles, the emptiness I feel so often, the disappointments of our lives, and the desire I have to make positive changes. I have several books I have started to write and never finished. I want to finish one of those books. I will be sad forever if I leave them undone, because writing is my gift, it is where I can unload and feel peace in the midst of the storm.
God is my peace in the midst of the storm and He alone holds me together when I am falling apart.
Posted by Megan at 8:20 PM
Friday, February 12, 2010
It may be too early to celebrate, but this is the first year in long while that Caroline has gone through a fall and winter without a hospitalization! She is doing very well right now, and perhaps the XR version of the Seroquel is helping too. Meridell said that the children who leave their program and stay on the prescribed course of meds afterwards have a 90% chance of no hospitalizations needed in the next year. Well, we can attest hopefully to the veracity of that statement, but I am waiting until the end of February to start whooping. I am just so glad she went there! We would do it again in a heartbeat if necessary.
Wednesday, February 10, 2010
Mae didn't get her Intuniv the night before or yesterday morning by accident. The result was a VERY hyper 10 year old who could not focus for the life of her in class or after school trying to do homework. What a difference. She got her card turned in school from green to yellow for excessive talking. Yep, her brain needs Intuniv. Whatever it takes....
Posted by Megan at 8:38 AM
Tuesday, February 9, 2010
I added some links to a few more resources near and dear to my heart. One is to Young Life, an organization that my husband used to work for, and I volunteered with after college. YL has been around since 1939 reaching out to teenagers around the country and around the world. They even have a ministry to disabled and special needs teens called Caperneum. Check them out! They have the BEST summer camps in the nation!
Focus on the Family offers wonderful resources for families, including single parents, in all areas, including marriage, parenting, finances, addictions, etc. They offer phone counseling as well.
Many bipolar kids struggle with hypersexuality, and we have had to have lots of frank discussions in this area. We have used Preparing Your Daughter for Every Woman's Battle, and Preparing For Adolescence with our bp daughter, as well as Passport to Purity ( there is a book for just boys too, Preparing Your Son For Every Man's Battle.) I highly recommend doing what is suggested in these books and CDs, which is taking your daughter or son away for a special weekend to listen to the CDs and talk about all of the changes coming up, and about God's wonderful plan for sexuality, and the temptations they will encounter. I have done this with each of our three oldest, in varying degrees of depth depending on their age, but it has been a great bonding time for us. Don't leave anything to chance, or any stone uncovered if you want them to trust you later! We have seen positive results from starting these discussion while they were in their tweens.
Posted by Megan at 8:30 AM
Monday, February 8, 2010
My husband and I often comment that in spite of early-onset bipolar disorder and the many ways that this illness affects Caroline, she is actually more mature than we were at her same age by leaps and bounds. The struggles she has been through since she was very young have taught her life lessons that many adults have yet to learn. She is an "old soul" as many of my friends who know her say. Her spiritual depth, and her understanding about the realities of life--the good, the bad, and the ugly--surpasses that of many of her peers, which us why she is so frustrated very often by her attempts at friendships with other young teens. They are often interested in things she has no interest in like gossip, shopping, dating, and the like. She has her sights set on marrying a man like her daddy, who treats her with respect. She sees that most teenage guys are "stupid" however "smart" they are, because they mostly think with their hormones. I tell her often that one day she will have a lot of friends, but they have to catch up to her maturity, which will take a few years. I think her late teens and twenties will be good years for her. As long as she stays on her meds, follows the Lord, knows her limits, and chooses the right friends, she can accomplish so much in this life. We know that she has a future and a hope! Jeremiah 29:11
Posted by Megan at 11:20 AM
Friday, February 5, 2010
When Caroline's mood improved greatly after increasing the Lamictal by 25mg, we decided to try the Amantadine holiday again, and this time she did fine, a little too "up" sometimes but not in a bad way. Dr. Stone at Meridell was the one who prescribed this "miracle" drug and recommended the monthly 48 hour holiday, something about giving the dopamine producers or receptors a break. Not sure which one is correct, but we are very happy with this drug. It is an antiviral in addition to being a Parkinson's drug, which is especially good for Caroline because she cannot get the H1N1 or any flu shot because of her egg sensitivity. Kids in her class came down with the swine flu, but she didn't. She has asthma so we are grateful for the protection Amantadine offers!
Her homecoming basketball game was last night and she was bummed because she wasn't allowed to play very much, but she had missed a lot of practices when she was home with depression (our on demand cable movie bill came today and it was out of sight for those two weeks!! No more of that please!) I hope she can see the importance of not missing school as much as possible. It is hard, though, to go to class when you are crying all day.
But lacrosse starts soon and since it is club lacrosse she won't have to miss practice if she doesn't go to school!
Posted by Megan at 12:58 PM
Thursday, February 4, 2010
Caroline's class just got another girl today, in the seventh grade. She said she was really nice. I am just so glad that there is now at least one other girl to choose from in her grade! Now I just pray that she will be a sweet one and that the new friendship will stick.
Posted by Megan at 11:05 PM