Vacation Tomorrow--California Dreamin'

Well, tomorrow we leave at 7:05 am to fly to CA for our big California Adventure.  I am really not convinced that bringing Caroline is the right thing.  She has been awful again today.  She just never smiles, is never happy, always angry.  Bill says a vacation in a fun place like Sea World and Disneyland is just what she needs.  I am concerned her mood will just continue and she won't be able to enjoy it and will make everyone else miserable.  If that happens, she and Bill will fly home early (my desire).  I want to be together as a family but I am over her attitude.  Her sisters are sick of her too.  Meridell says that beds are opening up next week, so I hope that when we get home, she will be able to go immediately to Texas (or Georgia).  We are all feeling that we have reached the end of tolerating her misery.  She needs help fast.  Pray that there might be a break in these clouds.  

The Helpfulness of an Online Bipolar Child Support Group

I joined an online support group through CABF and it has been a wonderful resource for me.  The other moms (maybe 95 or so) have such a wealth of experience and knowledge about cycling and medications and RTCs.  I have learned a lot in the last four weeks, especially about which of Caroline's meds take care of what.  You might think I would know that, because they are labeled either mood-stabilizers, or atypical antipsychotics, or antidepressants, or whatever, but certain of these meds are better for depression ,or for mania with agitation, or for the spring ramp-up, etc.  Something I read recently has prompted me to ask her pdoc to increase the level of one of them, and I am going to ask about increasing another.  I guess some of them have a certain therapeutic level that often isn't properly reached.  Each child has their own chemical make-up, but Caroline's is so sensitive and yet stubborn too.  

I Have a Dream Too

Who cannot know the gripping speech Martin Luther King Jr. gave in Washington DC, calling for equal rights for all men and women in our country.  "I have a dream..." is still regarded as one of the greatest speeches of all time.

I have a dream too.

I have a dream that one day scientists will find a cure for early-onset bipolar disorder.

I have a dream that one day bipolar children will be treated compassionately by their families, teachers, neighbors, and lawmakers, and will have equal access to all the services they need.

I have a dream that one day there will be the ability to determine exactly what medications each child needs according to sophisticated brain imaging technology. 

I have a dream that Childrens Hospital of the King's Daughters will open a beautiful, cutting edge child psychiatric unit for the children of Hampton Roads, offering the latest in acute care, as well as residential care, including neuropsychiatry, neurofeedback, and therapies such as occupational, recreational, art, music, animal, and yoga, as well as a huge, wonderful playground.

I have a dream that these special children will no longer have to suffer from social isolation, embarrassment, shame, and educational difficulties because of the amount of school they miss because of their illness.

I have a dream that this terrible handicap will one day be eradicated so that all bipolar people are free of this dream-robbing disorder.

Bipolar Disorder is Messy, Literally

One of the most frustrating things about having a bipolar child is that they make continual messes, everywhere.  There are several reasons for this.  One is that they have documented executive function deficits, meaning the area of the brain having to do with organization and planning is greatly impaired.  Thus, her room, after being cleaned and organized (with my help too), by the next day looks like we never touched it. Clothes that were folded and organized in drawers will be strewn all over the floor, bed, dresser, closet, clean mixed with dirty.  It is as if she has not an organizational bone in her body.  This is not a parenting problem, because although there is always room for improvement, my other daughters manage to keep things in their rooms fairly picked up--at least they know where to find things. 

 She, on the other hand, loses things regularly throughout the day, doesn't know which gym bag is where, and when she looks at a pile of homework, her brain can't pick it apart to see just one assignment at a time.  She flips out because her brain is so disorganized on the inside.  We have to create order for her very often, which is typical of all bp kids.  She needs tight structure throughout the day, which, with three others to take to doctors appointments, go to their school events, help them with homework, etc, I can't provide enough.  My life is very unpredictable because of the competing demands of everything and everyone.  I would love to have a schedule that stayed the same every day, that I could fully control, but I've had to give up that idea.  Anytime I try, I am defeated.  Every day, something comes up that was not planned.  I feel like I have given up on my own natural inclination to be efficient and organized because I am only frustrated by my attempts.

Messes go beyond her room.  She will start on various projects, especially while manic, that involve paper, scissors, tape, glue, or dirt, shovels, muddy clothes,  or drawing pads, pencils, erasers.  This wouldn't seem outside the norm, but everything she does is bigger than life.  If she is obsessed with something, she has to do it full tilt.  And she definitely doesn't clean up after herself well at all.  I will ask her several times, but she's in another world.

And then I am so preoccupied with managing her and keeping her safe and caring for the youngest two that still need a lot of help with whatever, that days will go by when I have not done the laundry, so it is spread all over the house.  Or basic organization goes kaput.  I hate my house so disorganized and unkempt.  I asked a friend once who knew my house before Caroline really got bad, prior to age 7, if my house used to look like this.  She said no, not at all.  I was relieved because that is what I thought.  I remember loving to organize after the kids went to bed, maintaining a certain order as best I could.  

Oh, the maid service I hired didn't work out because it took them too long to do one floor, for a big chunk of money.  So I decided to get a weekly housekeeper that can stay until the work is done and can do laundry too.  I am not apologizing for this at all.  I must regain some order here.

Out of Control Stress

Now Caroline has really gone into a full-blown manic state, which we now see she has been ramping up to for weeks now.  We may have to admit her to an acute psych unit until she is more stable to go to RTC.  In which case, neither she or my husband get to go on the SeaWorld/Disneyland vacation we have planned and paid for much of it beforehand.  We did get travel insurance on the airline tickets, which we will always do now.  I am really really stressed out about Caroline's crazy behavior, and my youngest is really acting out, and my oldest is running a 102 degree fever.   This is so very hard.  I was filling out Caroline's  Merridell application today and there was a section to check off previously tried meds.  I checked so many boxes.  About 14 actually.  Then there are the seven psychotrophic drugs she is on now, plus a few others for asthma and severe eczema.  And the boxes I checked for anger and agitation, plus lack of focus were numerous.  I sure hope the RTC things happens soon.

Moving a Step Closer to an RTC

Today we met with Caroline's psychiatrist's P.A. who had gotten the health insurance paperwork, and agreed that an RTC would be a good move for Caroline.  Her psychologist sent over her evaluation to add to the documents needed.  I think we have a good case for approval, but we'll see what happens.  We have decided that the RTC in Texas, the Merridell Achievement Center, is our top choice based on their neurobiological-based psychiatric approach, using brain imagery and scans to guide choices of medications.  I would love for them to do a med wash where they basically start all over again from scratch, because she is on ten different medications.  We leave for a big vacation on Saturday and I am just hoping she will be able to handle it.  She's acting a little too happy/irritable right now (rapid cycling?) so are bringing things to calm her down if we need too.

Health Insurance: The Other Necessary Evil

I am venting here.  We are trying to find the very best Residential Treatment Center (RTC) for Caroline that we can possibly find, one that has specific criteria that are important to her health and to us.  Some of the best ones are far from us, like in Texas, and Colorado, Wisconsin or Georgia.  We are willing to fly out there if that is the best scenario for our daughter.  Tricare, our health insurer, has an approved list of RTCs that they will pay for.  Some of our preferred RTCs are on the list, but our psychologist just told us, having dealt with Tricare before, that they will probably only approve the one closest to us, which we had already struck down based on what we saw on the website.  We really would like to take her to a place that has brain-based therapies such as neurofeedback and brain imaging based therapies, and equine therapy, which is so helpful to her and calming.  I am just mad that we are bound by someone else's opinion in some office somewhere who doesn't know our child.  The one in our state doesn't have horses and looks undesirable compared to some other RTCs.  I guess we'lll see.  This will be about a two week process now.  And we don't want to see her once a week actually, which Tricare requires, because we now feel that she will make better progress if she realizes we are not able to take her home every time we go up there (big problem before).  One great RTC in Texas only wants family visits every 8 weeks, which sounds  about right to us.  I mean, WE need a break too.  Her family is tired and exhausted and we need her to be cared for by others for a spell.  

The Scarcity of Connection

One of the things I have struggled a lot with in the last few years is that fact that when we are going through a hard time with Caroline (pretty much all the time), I can always count on my sisters, my mom, my neighborhood friends, and our pastors to call us, bring us meals, ask me out to coffee, or for a glass of wine, but the people that you would think would reach out to you, don't.  My closest friends in town seem silent, but my more "fringe" buddies are the ones lending a hand, doing my laundry, calling, sending emails.  Some of them may be reading this and wondering which group they are in.  It's not that all of my closest friends avoid me, it's just that a lot of them do.   Let me just say, don't be afraid to call me, or send a note, or invite me to coffee.  I would love to spend time with you or chat briefly.  Even just knowing that my close friends at least read my blog once in a while would be comforting.  I guess this is what a lot of people experience when they have cancer or something.  No one knows what to say, or are afraid of saying the wrong thing, or they feel completely inadequate to help so they shrink back, hoping maybe that the suffering one won't notice.  I've done that to other people myself.  I have two huge regrets regarding two friends who both died of cancer, well, three actually.  I was so busy with four little ones at the time, that I felt unable to be of great help, so I kept a low profile and hated myself for doing it (still haunts me).   I know this post is kind of brutally honest, but I am speaking not only for myself, but for anyone out there who is going through the valley and feels like people fade away.  Suffering is hard, but loneliness through suffering is harder.  

Residential Treatment Center

Bill said last night he could see the wisdom of sending Caroline away to an RTC for a period of time.  I have been online researching and also asking other moms of bp kids about their experiences with long-term RTC stays.  I've gotten some good recommendations.  Nothing in our state looks that great, so we are looking at ones in Utah, Georgia, Texas and Vermont.  We have specific criteria for what we want, including equine and occupational therapy and lots of true professionals running the place, not a boot-camp type of a place where anyone could work there.  She doesn't need to be yelled at, she needs structure and affirmation and caring people.  We have to contact our insurance company to get pre-approval and also get her doctor to sign off on this.  We may be taking her as early as this week, so I have a lot of phone calls to make.  She knows we are looking at this and she actually isn't put off. She feels pretty helpless right now.  I really don't want her to miss our CA trip, but we will just have to see.

This May Be a Wash, or Worse

I don't know where to start because a lot has happened in the last 24 hours.  I'll just say that Caroline has already decided she doesn't like this school, or any school for that matter.  She has given up hope that she will ever be able to go to any school because of the fear that she will embarrass herself and have to leave, lose friends, etc .  She in general is acting hopeless about her future and gets angry when we try to assure her that she does have a hope and a future.  The school has offered for her to go only half days next week with no homework, but she says she has already been making up stories about herself to the other kids, and feels like a fool (tall tales a very much a part of bipolar disorder).  

Yesterday culminated, after I had to pick her up after only being at school for about 45 min, in her packing her bags and running away.  She took pics of our family, her med box (she knows that they are very important), and took off on foot and walked down through a very bad part of town (murders and shootings daily) for several miles, traipsed around the coffee shop area on the other side, make her way over to another part of town after visiting the zoo.  She was gone for about an hour and a half.  We had called the police, but thankfully someone spotted her before they did and I was able to get her in the car and take her immediately to her psychologist.  We tried to process what was going on in her head but it was hard--she seemed not to understand or care about the danger she was in. The psychologist said when Caroline left the room that she felt strongly it was time to consider a long-term residential treatment program.  I actually agree this time.  If she refuses to do school, there isn't much else we can do. 

I was completely nauseated when we couldn't find her, just numb as I printed out photos for the police to help find her.  I think I've had the last straw.  She is just driving everyone crazy and we are losing time.  Bill believes the school could still work for her, but I think she is convinced it won't.  

In the mean time, my husband's dad has been deathly ill, in and out of the ICU and rehab facilities for 8 weeks now.  The stress of Bill being gone a lot during these weeks of Caroline doing poorly has pushed me to the edge.  I begged him not to go this weekend.  He agreed, but of course if his dad takes a sudden turn for the worse again, he will go up there with my blessing.  

We are going to CA next week to see both family, Sea World, and Disneyland.  We so need a vacation.  Just to play together and swim with the dolphins.  Caroline may not be at her best, but I'll just give her Ativan if I have to.  If she goes to an RTC, it would be right after that, after we line up funding because it is about 11,000 to 20,000 a month!  Insurance would pay for maybe 90-120 days of it, but we would have to find the rest.  An ideal stay is 6 to 12 months. There are some groups that you can finance through .  We'll do anything to help her get back on the right track so we don't lose her to despair, drugs, whatever.  She is at a critical juncture and we have to act.

Third Day...better

Bill decided to let Caroline sleep until she woke today.  I was not so sure about that, because I was afraid she would wake up mad that she wasn't on time.  He went off to work, and Caroline woke up a half hour before school started, and she was furious indeed.  Thanks honey.  I knew she needed more time to wake up, so I told her I would take her to breakfast.  We went to a coffee shop, she ate, and then said she really needed to go back to bed.  It is so hard to know sometimes what is fear and what is real need.  But knowing she can't function well tired--she didn't fall asleep last night until 10:45 apparently even with her sleep meds--I decided not to risk having to pick her up again.  She did go back at 11:00 and stayed til 3:00 without incident.  She was just fine when I picked her up.  

She must be anxious or something, because normally her sleep meds knock her out and keep her asleep all night.  She is trying to do her homework now after lacrosse practice and she is freaking out again over the work load, even though her teacher said not to worry, just finish what you can.  Her teacher had called me last night to find out how she could help Caroline to have a successful time there.  She was great, very compassionate and understanding.  Today, I dropped off a brochure from the Child and Adolescent Bipolar Foundation which was penned just for educators on the types of accommodations these kids need in class, one for her teachers, and one for the principal.  I hope they read them because I think they will be helpful.  

Guess the Day Wasn't Over Yet

I should have waited before posting that last note.  Caroline woke up from her nap a little before noon, stumbling around and saying she had to go back to school right then.  I could tell she was still in a brain fog from sleeping but she insisted on returning in time to have lunch.  Well, with an uneasy feeling inside, I took her to school where we found out immediately that lunch was at 11:00.  She was extremely unhappy about having missed lunch because it was her only social time.  I could tell this was not a good way to come back to school, based on how grumpy she was, but she left to go to class.  I went to Wal-Mart around the corner, then got a phone call from her about 10 minutes later begging me to pick her up, that the work was too much, she was behind, she couldn't keep up with the teacher, etc.  I knew the real problem was mostly that she was too tired and groggy to do school.  Remember not to let her rush off to school without fully waking up, I scolded myself.  

Her teacher called me this evening and said she was just concerned that Caroline was overwhelmed by the writing, and needed to know that she could make accommodations for her.  I told her it probably wasn't the writing as much as her stupor and grumpiness that made her freeze up.  Her teacher seemed quite understanding and wanted Caroline to know she didn't want to stress her out too much.  I think that this week is just going to be a big adjustment, and we have to make sure she is in bed by 9:00 sharp.  

I felt discouraged by this day, once again with Caroline home, embarrassed again, and me getting nothing done again.  But I know I need to hang in there and not judge the rest of the time on today's events.  I just wish one week could be fantastic for her, but I guess I have to admit that not a week goes by without some sort of to-do or trauma.  I just get really tired of it, and sad for her.

Second Day Not So Great

Well, this second day at school did not go as we thought it would.  Caroline's lack of sleep the night before and then having to stay up later than she should of to complete homework in six subjects led to her being exhausted this morning.  I woke her up at 6:30 (she has to leave at 7:30), and she was very difficult to rouse.  When she did come down stairs, she fussed and grew increasingly agitated saying she was too tired to go to school.  Of course, I refused to let her stay home (mistake) and she was at school for only a half hour or so when she called my husband to come pick her up.  She was obviously too upset and angry by that time to stay there.  He brought her home and she went straight to bed.

Bill said that now he knows why schools frequently start with half days in the fall. It is a big adjustment for them to have to get up early, do the homework all afternoon/evening, and then go to bed earlier when during the summer they can stay up later and then sleep in until they are rested.  Caroline got a big jolt on Monday, and with the bipolar disorder, everything is compounded, especially if she has lost sleep. 

I am mad at myself for not listening to her when I knew she was truly tired, not just that she didn't want to go to school.  I want to treat her like my others, but she needs an extra measure of grace.  I myself have missed two nights of good sleep and I was non-functional both mornings until I had a nap after the kids went to school.  Not as productive, but better than yelling at my kids all afternoon and evening because I am exhausted.  

Hopefully tomorrow won't be a repeat.  I am concerned about her missing school and having too much make up work on top of the regular homework.  

First Day at New School

I just picked up Caroline from her new school, and it seems as though everything went great.  She liked the kids and her teachers and came out with a smile on her face.  The workload seemed about right: challenging but not too hard.  She woke us up last night at 4:00 am because she couldn't sleep.  I have her one of her sleep meds and she went back to bed but was up before 7:00 She was extremely anxious about getting there on time with all the right stuff.  She was actually very agitated and I hoped that wouldn't carry over into the school day,  but it didn't.  I guess we'll just  continue to pray and hope that she does well there for the rest of this year.  I went back to bed after everyone went off to school and slept for three more hours.  Can't do that middle of the night thing anymore--thank goodness we don't have an infant!  

Please don't do this

Right now we are dealing with a very difficult situation with my in-laws where basically both are incapacitated, one quite recently and without warning,  and their will was not in order so my husband and his sister are scrambling to try to get power of attorney so that the state doesn't take most of their assets and medicare stops paying for nursing home care. This means my husband has had to be away a lot recently trying to care for his dad, the financial problem, etc. while I am trying to hold down the fort with a bipolar child and three others.  Right now, I am really stressed.  Let's all remember TAKE CARE OF THINGS EARLY so our children aren't left holding the bag.  Life is short, and sometimes the end takes us by surprise.

Just in Time for REALLY IMPORTANT EVENTS

What's on time? Her ranting, raging outbursts.  They always arrive just on time for some REALLY important meeting/phone call/trip/task or whatever that you really want to go well.  Maybe she senses my frenetic anxiety over whatever it is and she takes it on as her new modus operandi.  Whatever the reason, the stress level goes from a five to a ten in about 10 seconds, both she and I escalating rapidly.  Maybe it's the continually dull gray skies we have been subjected to for weeks now.  All I know is I can't wait for Monday when she starts school.  I REALLY hope it goes well.  I've got a house to sell.  

Forming Support Group

I have decided to pursue forming a local support group for parents of bp kids.  I think I will call it Tidewater Parents of Bipolar Kids.  There is another local group that is associated with the National Alliance for the Mentally Ill, but I wanted to form one associated with the Child and Adolescent Bipolar Foundation, which has a tighter focus on kids.  I love their website.  At this point, we know enough professionals to bring in monthly as speakers.  I have already advertised the first meeting via CABF which helps connect people with support groups, but also I will advertise in local magazines and through Caroline's therapist, who counsels a number of BP kids.  

Also, I have joined an online support group for moms of bp teens through CABF.  The combined knowledge among all of the participants is amazing.  I used to belong to one of these before but it was several years ago and the postings scared me.  Now, I can read the trials of these other families without flinching because we have been through a lot already.

When Siblings Suffer

My fifteen year old daughter "Elizabeth" begs often to be sent away to boarding school because she hates being here so much and dealing with Caroline.  I really feel for her.  My husband is much harder on her, probably too hard, than with the other girls.  She says she feel like no one ever listens to her or pays attention to her.  She failed her driver's permit test today and now she's really upset.  It is hard when I already feel guilty about all that she has gone through, and the things that haven't been a part of her growing up because of Caroline's illness.  I pray that she will be able to recover from this dysfunctional home that we never wanted to be this way.  I do try to do things just with her, but I feel like I am always competing with her busy social life and homework and Young Life involvement.  

Yay!

We heard from the school in the late afternoon that they want her to start on Monday.  Caroline was thrilled.  That made up for the fact that her brand-new bike she got for her birthday two weeks ago was stolen.  We discovered that yesterday.  Bummer.  But she is so elated about going to school that she is quite distracted.  

Still Waiting

We thought we would hear from the school today whether or not she had been accepted, but they called asking to talk to her psychologist, the same one Caroline has had for six years.  I put a call in to her, and she did call the school and had a good talk with the principal's wife, who I guess has authority there too.  She said that they really only had one question and that was if  she was  aggressive toward other kids/teachers, which actually she hasn't been.  She just kind of melts down all by herself.  If she is aggressive, it is toward her sisters, and less often towards us. Anyway, we'll find out tomorrow, hopefully.  

Forgot to Add...

Oh, yes, and after Caroline was rescued from the woods, I piled everyone into the car only to discover my battery had died.  Figures.  Thankfully my sister knows how to jump start a car.

Never a Dull Moment

Our lives are very exciting with Caroline in it.  We never know what a day will bring.  Like yesterday when she took my sister's dog for a walk in her neighborhood, decided to try a path into the woods (bad idea), then got so lost she cried out for help until someone heard this faint voice and went to go find out who was in trouble.  She was covered in mud.  I had no idea she had even gone past the end of the street.  

Then today, while in a very agitated state because of who-knows-what, she went out front and decided to take it out on my bushes.  I went out there and told her to stop whacking at the bushes, she told me to shut up (one of her newest and fondest things to say to me), and I was ugly back (not a great Mommy moment), and went back inside.  The next thing I heard was her outside, crying in a very scared manner.  She runs inside holding her head, which was gushing blood down her face.  Apparently she turned from the bushes to the dog leash and was swinging it around in anger, until she hit herself in the forehead with the metal end of the leash.  Natural consequences I would say.  I took one look at it, noted the gaping hole, and said yep you need stitches.  So off to the ER for the long wait.  Luckily my husband relieved me after an hour or so.  She came home with three stitches and instructions not to play lacrosse for the week.  Great.  Just when we got off to a good start.  Oh well.  

One day in the life of Caroline Denisovitch.  (In college, I actually didn't get it until after I had finished the whole book that all of that happened in one day to that guy.  I mean that was a lot of stuff to happen in 24 hours.  Now I understand how that can be, sadly.)

So We Aren't a Year Behind

Today we took Caroline to the private school for her interview and testing.  I was very nervous abut her placement test because of the spotty homeschooling she has had this year.  Well, I guess her natural ability trumped output this year because she placed into seventh grade math, eighth grade reading, and was solidly a sixth grade speller.  Amazing!  She was so proud, and so encouraged that she hasn't lost as much as we feared.  Now they will deliberate and let us know tomorrow if they think it would be a good fit or not.  We think they will say yes, but can't be sure.  The interview went well, we thought, although Caroline got frustrated with how much we talked instead of her and was showing it.  We were very honest about her bipolar condition and the different schools we have tried that were not a good fit. Hopefully she'll be accepted. Even if she isn't, this was a big boost for Bill and I and Caroline as far as her education goes.  At least she will probably place into seventh grade next year at whatever school she goes to.  Thank God!

Navel Gazing Not Intended

I realize that in our society we now have a new and annoying penchant to feel the need to say something about ourselves, whether by twitter, Facebook, Myspace, or blogging on a daily, even minute to minute basis.  I shudder at the thought of joining that throng really, because we are self-centered enough.  Please know that I write on a daily basis out of necessity not out of narcissism.  If I don't write, I implode.  And I want the world to know that early-onset bipolar disorder deserves every bit of research and attention as autism, cystic-fibrosis, Type I diabetes, leukemia and every other childhood disease out there.  So please keep reading knowing that I am always aware of my inborn tendency toward navel-gazing and that I know that I am continually called to serve others, not just my own family, whether by supporting Compassion International, or by caring for the needy around me.  Not because I am some Mother Theresa, but because we are only truly alive when we are serving.  "The glory of God is man fully alive" (Sara Groves, Add to the Beauty)

The Daily Dive

Today I had to drive Caroline around in the car for an hour while she slept--just like when you have a baby that melts down but then won't take a nap. Car travel is calming to her for some reason, so we use it not infrequently. She was fine after that, until about 5:00 when she takes her daily dive. The late afternoon and evening are always her worst times. Remember the hell hour before dinner when you had toddlers and preschooolers? Well, we have one who seems to not have outgrown it. Very inconvenient when you have dinner to make, three other kids who need your attention, and a husband who has come home from work and instead of spending time with you, he has to spend the early evening doing damage control so we can all have some peace later. Maybe.  Sometimes I think it is her craving for sensory stimulation that hasn't been satisfied, sometimes I think it is teenage histrionics, sometimes I think it's the devil. I'm exaggerating but that's just how it feels.

A Sigh of Relief, sort of

Good news!  Caroline actually played in the lacrosse game today!  And did great--scoring a goal and played extremely well.  She woke up this morning and seemed better, and was quite excited the whole day about the 4:30 game.  We are so relieved because she had not had one successful practice where she actually stayed and completed it.  Maybe this will turn the corner for her.  She is definitely a little too "up" still, acting manic but not belligerent like last night.  She is just laughing uncontrollably, and talking w-a-a-a-a-y too much.  I took out the flax oil and also decided she doesn't need anymore of the anti-depressant.  Hopefully she will calm down over the next few days.  

Mania Confirmed

Unfortunately, Caroline is showing signs of being very manic, which looks like extreme belligerence, physical aggression, taunting, laughing in a sinister sort of way, stealing money from her sisters, grandiose self-centered thinking, and this weird devil-may-care attitude about anything.  "I am just showing you my dark side," she boasted, as if quite proud of her rebellious mood.  We are not sure what exactly may be going on with her chemically, except that I did just introduce high potency flax seed oil pills to help with her cholesterol.  She had a bad reaction to fish oil, also inducing mania, so maybe she just can't take high doses of Omega 3 and 6.  We were almost ready to take her to the hospital because she was so out of control.  I could feel Bill's despair.  Watching her in this state just tears at your heart.  She can't see that how she is acting is abnormal.  With Bill's dad still in the hospital, coming several times close to death, I can tell he is very weary and has just about had it dealing with Caroline.  

How Did You Know She Was Bipolar So Young?

There are probably a number of readers who are wondering how and when we knew Caroline was bipolar. Well, it was a process of noting her unusual thoughts, behaviors and obsessions, culminating in a full-blown manic state at the age of seven--very scary.

When Caroline was born, she came home to happy parents, and a sweet older sister, aged 2. Jane and Mae followed within the next four nears, so at one point I had a six year old, a four year old, a two year old, and a baby. We were truly a happy if busy family. We have always had a loving strong marriage, and there was absolutely no reason to think that any of our children would have a major psychiatric disorder.

We did notice that when Caroline turned about fifteen months, she began to show quite a temper. Up until then, she was just the perfect baby. She was not overly fussy, or resistant to sleep at all. She slept through the night at eight weeks and took two hours naps three times a day. She smiled all of the time and showed no signs of being overly tempermental.

One day, at fifteen months she got mad at me and tried to bite me. That was something new that my older one had never done. But it was not unusual for a toddler. However, her temper was becoming more and more obvious. We laughed about it and called her strong-willed, just thinking we would have to discipline her more later.

But at three, she became obsessed with the story of David and Goliath. We could not read that story to her enough. Then she would try to act it out. Very cute we thought. At Christmas she wanted adventurous toys, like a fireman costume, or a spaceship. Our oldest only ever wanted dolls, kitchen toys, frilly dress ups. But we just thought, well she is just different and that's great.

Then the tantrums became very out of control. She would get so angry when she was told no it was as if she was having a seizure. And they would last a long time. She would even try to throw things at me like blocks and try to bite me. We tried every form of discipline, read books, took classes, and in spite of all of our efforts, her temper would not be controlled. In preschool, she was a bright, spiritual child, but would get in trouble for stubbornness, and once she bit another child when she was four out of anger. Her teachers always liked her a lot , thought she was extremely smart, but called her very strong-willed.

By the time she was five, I felt like life was getting really out of control. She would descend into these downward spirals, expressing dissatisfaction with herself and with life. She seemed depressed at times and had dark thoughts. So we took her to a psychologist, who did a battery of tests. The results came back that she was depressed enough to start medication. This both reassured and disheartened us because we had a confirmation of what we had suspected, but why would this child, certainly not abused or neglected, in a very loving home, be depressed? It didn't make sense.

I got the prescription filled for the anti-depressant, but something made me hesitant to give it to her. The medicine was Paxil, which later was taken off the list for use in children because of inducing suicidal thoughts. I think God was telling me that this wouldn't be good for her. I am grateful I never gave it to her.

She seemed to improve in kindergarten, and so I put off pursuing more psychological testing or counseling. But then, on the first day of first grade, she began to get in trouble on the playground. She was rougher than most of the boys, and any game she viewed as war. The same was true in PE. She was David and everyone else was Goliath. She was on top of the class academically, but wasn't getting high marks in behavior outside of the classroom.

In addition, my oldest child was becoming afraid of her. Caroline would get physically violent towards her and her younger sisters, scratching them and throwing punches or kicking. When mad, she would kick her walls and door and even try to kick or hit us. We were feeling a lot of despair and worry over her. One day Elizabeth told me she couldn't take her anymore and said "I shouldn't have to be afraid of my own sister." Those words hit me hard, and I decided something had to be done so I took her back to a psychologist, a different one, for more testing. This time she was referred to a different psychiatrist, and she also began counseling on a weekly basis. She was diagnosed as both ADHD and depressed. This time I was willing to put her on a medication because the situation at home had become unbearably stressful and chaotic for everyone.

The psychiatrist put her on Zoloft in November of 2003 and at first she really seemed to improve. Her dark moods disappeared. But then she began to do really odd things. She began to exhibit the "superman complex" where she showed no fear about anything. She would jump off of the very top of our jungle gym just for fun. A few times she climbed out of her second-story bedroom window and jumped down to the ground, again for fun. Then she began to make these weird concoctions in the kitchen from all sorts of different things. She called them potions. I found tools from Bill's toolbox in her closet, with evidence she had been trying to dig up the wood floor. She told me she was making an escape tunnel. By this time we were very uneasy about her state of mind. Zoloft had been implicated in the news about the same time for being a strong trigger for suicidal thoughts and behavior in children and teens, but she didn't seem depressed, just really full of herself. One day she actually broke into an empty house on our street and pretended that was her new hideaway. The policeman we called to explain this too couldn't believe that a seven year old had done that.

The climax was when she got on her little bike and rode far away, across a bridge, through a heavily traveled area, and into an entirely different neighborhood, several miles away, one we had only ever gone to by car. We were incredulous when she rode up breathlessly and told us of her great feat. But then she began to describe in detail a particular area that I know I had never taken her to, but I was familiar with, and we realized to our complete horror that she probably had executed this dangerous trip .

We took away the bike and locked it in the shed. She got very angry, punched my husband in the stomach hard, grabbed an axe from the garage and began to swing at the doors, puncturing the plastic with ugly gashes. As we watched her rage and chop from the kitchen window, we got her psychologist and psychiatrist on the phone, and my doctor sister. They all said take her immediately to the psych hospital. While we were talking, she turned toward us and held the axe up to her neck, threatening to kill herself. Fear gripped my heart as I watched my precious and beautiful little girl seemingly possessed by an inner monster trying to kill her. I ran out to her, and she dropped the axe and was crying and saying how scared she was. We bundled her into the car and drove to the hospital. There she was admitted for a week. They told us she was probably bipolar and was reacting negatively to the anti-depressant, as a bipolar child would. We didn't want to believe it, resisting the diagnosis initially. But they put her on a mood-stabilizer, Trileptal, and took her off of the Zoloft. She began to improve, and so we concluded she likely was bipolar.

Bill's dad is bipolar and depression does run in my family, but I never thought that meant I could have a child who was genetically predisposed to have a childhood mood disorder. An incurable, lifetime one. One with stigma and heartache attached to it. We grieved. It took weeks for the Trileptal to really have its full effect, and then she was better. Still bipolar, but better. At that time, we had no idea how much our daughter would suffer over the next six years. She has been hospitalized every year since then, sometimes twice a year, because of big mood swings or, even worse, hearing or seeing things. Usually one of her meds has petered out, or she needs something added. This has been much much harder than we imagined.

A bipolar child is different from a bipolar adult in many ways, and I will explain that in some other post. If a child is diagnosed young, it usually means they will have a more severe form of the disorder as an adult. That news was not what we wanted to hear. But this is what God has given us. So we have to just keep going, keep loving her and accept the fact that we will be caregivers for quite a while.

Brain Fog Did it Again

I feel like the stress of raising a bipolar child has given me this brain fog that causes me to forget a lot of things: what I just walked into the room for, what I was just about to write down on the white board, and important appointments.  Like the interview for Caroline at the private school!!!  I thought I had written it down correctly, but apparently it was on Tuesday.  Bill wants me to get a blackberry ASAP.  He's probably right.  We rescheduled for Monday.  At least we got the application turned in with all of her test scores, past report cards, etc.  When they see that she is bipolar they might just say no anyway.  At least today the sun is shining and the trees are all blooming.  Spring at last!

Her meeting with her psychologist today to process her meltdown last night went really well.  She was able to articulate exactly what her frustrations were, and we talked about trying to increase her distress tolerance, which is in the negative right now.  

This weekend my oldest gets her drivers permit!  Everything happens so fast now, and I can't keep up with everyone's needs/wants/appointments/rites of passage.  Life feels like a blur.

Wrote Too Soon

I don't even want to write this because I was so angry and discouraged by Caroline's actions yesterday after she got to lacrosse practice.  First, let me say that I was concerned she was a little manic yesterday when she got suddenly hyper-focused on getting a hamster.  Her last hamster died because when she was in an extended manic phase she forgot all about it and let it die of starvation.  Well, she seemed a little too intent on this new mission, but it's always hard to tell if a new mission is just being bipolar or if it is the first sign of a period of mania.  

So she goes to lacrosse with my husband, seeming to be fine and up after we cajoled her enough.  When she got there, my husband noticed that she seemed very confused by the coaches' instructions and kept doing the wrong things.  There is a whole crush of girls there, not just her team, because I guess they are training several teams at once, then dividing up into teams on game days.  This isn't the best situation for Caroline, because she is very ADHD too and gets extremely distracted in noisy, crowded scenes (she can't take stimulants because she goes immediately manic).  

Well, she kept messing up, then got winded after a run, which completely undid her because she has never been out of shape before.  She is used to running fast with everyone trailing behind, but this time the extra weight she is carrying (15 pounds since Jan. 3rd) and having not run all winter caused her to collapse after the run.  She thought she was having an asthma attack, but my husband said he could tell she was just winded.  Then she insisted he take her home, but he insisted she stay and at least watch the team if she couldn't run (her ankle was also an issue since she had twisted it the day before).  She threw a fit, and went to the car where a bigger scene ensued.  She called me crying and shouting hysterically.  I was so shocked to hear she was doing this, and then so angry I told her that daddy was the one to make the decision and I hung up.  

She then proceeded to hit my husband's nice car with her lacrosse stick, putting several big dents in the hood.  I am really bummed about this since Bill has never had a car so nice before.   It is only a Honda Accord, but he has always driven the crappy car.  We need to come up with a good consequence for this.

He finally was able to calm her down enough to go home.  Now I don't know if she is going to want to go back because of the embarrassing tantrum she threw in front of everybody.  She is truly her own worst enemy.  Her first game is on Saturday.  I hate bipolar disorder.  

Today we have her weekly counseling appointment and I hope we can process this whole event.  She wants friends but pushes them away through these sort of incidences all of the time.  The psychiatrist wants us to up her mood stabilizer Lamictal and go down on the anti-depressant because of the spring mania thing.  We are doing that, and hopefully she will be less explosive and mission obsessed.  She has an interview and testing today at the private school we want to try her in, but I am really afraid she won't be place into the sixth grade, but held back again due to all of the school she has missed.  She is afraid of this too, but we just have to move ahead.  It would be really hard to have her in the same grade as Jane, because the comparisons would be at times so discouraging.  Jane does most everything right in school, academically and behaviourly.  We could not have them in the same school at all. 

We'll see how today goes.