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.
Never change, start or stop a medication without the approval of your child's physician!

Tuesday, June 30, 2009

Funny Family Therapy

Last week we had an amusing family therapy session with our new local counselor.  We brought in the two younger girls to meet her and to begin the discussion about how we will be relating to Caroline once she comes back.  She asked Mae and Jane if they could, one at a time, select from about two dozen stuffed animals and designate one for each member of the family.  Oh, and Bill and I did this two.  The results were quite telling as well as hilarious.  We were to say why the stuffed animal they picked represented the family member, which made for interesting comments.  I was relieved that the kids seemed to see us mostly as loving, authoritative parents.  You know, kids can say anything and will, so I was a little nervous about how they see me, because sometimes, when chaos is visiting our family through Caroline's meltdowns or crises, I react poorly and say things I shouldn't say.  All parents have at one time or another (if you say you haven't you are lying).  Everything they said was pretty accurate about each other, but not always about themselves. 

We finally got Elizabeth, the oldest, in to meet the new counselor today.  We had to twist her arm to get her there.  She doesn't see why she needs therapy.  We all certainly see it, but she is in denial.  She wants to believe that all problems in our family are Caroline's in origin, which sadly isn't the case.  Elizabeth brings her own set of issues to the table, including, denial of her faults.  She really has a hard time with this.  I love her to death, but she is amazingly self-righteous.  Hopefully she will grow out of that with time and experience!

Caroline is becoming very homesick.  She has been at the RTC for two months now and with school ending there, I think she is getting tired of summer in Texas.  My husband goes out to see her this weekend which will help, but we really don't think she is ready to come home yet.  We aren't ready for her to come home yet.  And we still don't know when or if are moving.  Very frustrating.  

Wednesday, June 24, 2009

I Secretly Wish She Could Stay

Yes, I wish Caroline could just stay there, only because she is thriving there and she hasn't thrived in years.  She is as happy and functional as she has ever been.   She misses us terribly I know.  I don't miss her yet, but I know I will.  We don't know that she will do as well when she comes home.  At the RTC she has a very tightly  structured day that our family couldn't reproduce--life happens here.  I aim for order but nothing ever is perfect.  And her school situation there is ideal: small class size with teachers who understand bipolar kids (and truly care for them) and can give her plenty of one-on-one attention and who can challenge her right where she is at in every subject.  There are no schools that I know of like that here.  Even the special school here that claims to do that didn't really meet her educational needs.   So it's hard to want to bring her back when you know that life here will be so much more challenging.  We are still unsure of what school she should go to in September, and I am quite anxious about it.  The ED classes (emotionally-disturbed) can be full of kids who are close to going to juvenile detention, and she doesn't fit that at all.  I pray for wisdom.

Tuesday, June 23, 2009

Good News

Today Caroline informed us that she and another girl were chosen to be on the Student Council which was to meet with the staff at the RTC today and discuss pertinent issues concerning the residents.  She was chosen, as are the other kids, because of her outstanding behavior.  We are very proud of her.  She continues to do so well at Meridell.  During our weekly phone conference today we discussed how we can incorporate more structure in her day at home, on which she obviously thrives.  And also we talked about how she can take more responsibilities for doing her chores, etc. unasked.  That would be a new thing.  She has always had to be cajoled into completing or even starting anything.  

Monday, June 22, 2009

That's not what I meant...

Just a postscript to my last blog about rediscovering our marriage.  Right after I "rediscovered" it, I almost lost him to a piece of steak.  He choked tonight on a piece of meat at the pool and two different strangers had to do the Heimlich on him. Very scary.  I am glad he's still here to say the least.  I get to rediscover him again thank goodness.

Sunday, June 21, 2009

Rediscovering our Marriage

One of the nicest advantages to having Caroline away this summer is that I have rediscovered that I HAVE A HUSBAND.  It's as if I suddenly noticed that I have this wonderful man that I had forgotten about.  We had become caricatures of ourselves, or maybe just lost a whole lot of ourselves while putting out fires for the last ten years.  I had become so sad whenever I looked at him.  He always looked completely stressed out and angry, short-tempered, nothing of the funny, fun-loving, relaxed positive guy that I fell in love with eighteen years ago.  Now I see him and I think, "Oh, yeah, he has needs too, and I have not been meeting them at all!"  We had become short with each other, no time for romance or date nights.  The humor seemed to have left us.  That's a bad thing when you can't laugh together anymore.  

Well, we are laughing again.  I am seeing again how beautiful his eyes are, this wonderful blue-green with yellow speckles.  His face is so much more relaxed.  We went out to dinner for our anniversary and had a great time being pretty goofy.  He's goofy at heart.  Life has made us way too serious.  We need to just walk on the beach together, run together, go out more.  We really enjoyed our weekend away to see Caroline last month--we haven't been  away from our kids for more than one night, and we had three!  

I want to bless him.  I truly do.  I went kind of overboard for Father's Day.  I spent way more than I ever have on this occasion, and more than I should have, but I feel like I spend time and money on everyone else's needs, even my own, and he gets the dregs.  So he opened a lot of presents.  I was happy to see him so pleased.  And now I am realizing that his giftedness which is acts of service I miss completely when the laundry is not done and he can't find anything in the morning, or when the house is disheveled.  He does a lot for me all the time, but I need to remember that it is the little things that mean a lot to him.

So we need to really take advantage of this time without being caregivers all the time.  She may come back before the end of the summer, and I don't want to have wasted this time we have been given!

Thursday, June 18, 2009

Cause for Concern

We think Caroline has become destabilized somehow, either by the decrease in her Seroquel or in her sleep meds.  She says she is waking up several times a night which is never a good sign, and we thought she had been sounding hypomanic in the last few conversations with her.  They did introduce fish oil with our permission, but it might be activating mania like we suspected in previous trials.  We thought they were introducing Trileptal, another mood stabilizer, as they reduced the Seroquel, but we haven't heard that they have. I need to call her psychiatrist out there to find out what' going on.  She said last night she was not doing as well as she had been and was having mood swings.  Hopefully they will get this straightened out soon.  We thought her positive attitude towards everything was great but a little too good to be true.  Just very unusual for her to be that "up" for that long.  She keeps telling us rather grandiose stories of her athletic feats there which we know can't be real.  Like treading water for 45 minutes straight, or swimming 100 laps in the pool, or that she has lost twenty pounds.  The later may be closer to the truth, but kind of extreme.  Maybe fifteen.  Either way I need to send her new clothes so they don't fall off of her.

I saw an article today which documented a study done through MRIs of bipolar teen brains versus normal teen brains, both structurally and functionally.  They found abnormalities in both the structure and function of the amygdala in bipolar brains.  While showing them faces with different emotions depicted, the amygdalas of the bipolar teens showed too much activity, while being structurally smaller than the amygdalas of normal brains.  I am so glad for these studies that show that bipolar kids have actually physical abnormalities of their brains not just chemical differences.  One day maybe all of this will lead to a cure!

Tuesday, June 16, 2009

Which problem do we focus on first?

I haven't written in a while because my younger two have been out of school for a week and we have all been adjusting to a new routine--for me one with less time to myself to write.  This is the first summer in many years where the first few weeks have not been stressful at all as far as my kids go.  Normally, the beginning (and for that matter the rest) of summer have been something I dreaded.  The other three would be content with camps, hanging out at the pool, being with friends, or just each other, while Caroline would be impossible.  She would whine everyday about having no friends and nothing to do, which was correct.  She might have attended one lacrosse camp, but wasn't interested in any other camps, and didn't do well hanging out at our pool.  She wouldn't relate well to the other middle-schoolers there and often ended up making a fool out of herself.  Summer just meant endless stress for me, no rest or relaxation, just vigilance every day as we tried to manage our bipolar daughter.  I hated summer. 

This time, without Caroline here, I feel quite relaxed physically and mostly mentally, but I have a new worry that I can't stop thinking about.  During our last phone conference with Caroline's psychologist here and at Meridell, we got to the subject of school in the fall.  We have been planning a move to a different public school district so that we would have a public school for Caroline to attend, finally.  But as we brought up the subject, both her psychologist in Texas and the one here were adamant that public school would not be the best place for her.  Their reasoning was that she needs a small class size, but that an ED or Spec. Ed classroom wouldn't be right for her because she is so smart, motivated and high-functioning (now) but vulnerable.  Truly Caroline does sound better every time we talk, so much more settled and content, and mature.  We are amazed at the change in her, how self-aware she is, how hard-working she is in school and on dealing with her own issues.  They recommended that we look for a small private school for her.  

Immediately I am anxious over this whole thing.  I would love for her not to have to go to public school because I know that is not the best learning environment for her, but we have been through the rounds of private school and homeschooling and we have come up empty on success stories.  Or it would be fine at first, she would be happy and productive, but then she would become manic and do inappropriate things that made her never want to go back.  We know that it is unrealistic to think that she won't have other manic episodes this year.  She has every year, without fail.  I hope that Meridell can find the very best med combination that will keep her stable for a long time, but as she grows, her chemistry will change, I am sure. 

So I keep racking my brain for a good solution.  With the housing prices still falling, we may not be able to sell our house.  So what do we do with the others whose school situations are also up in air?  We don't want to send them to the public schools in our district because we have already experienced enough to know that isn't what we want for our younger kids.  So that means if we don't move we are looking at possibly three private school tuitions!  That wasn't in the plan at all.  I think I would have to go to work.  We could rent, which now looks like the best option financially.  We stand to lose too much if we sell, as do many other Americans in this economy.  

I am pretty sure  I know which private schools I would send the younger ones to, and the oldest would stay at the public high school where she is doing so well.  But what about Caroline?!  I wish there was some easy solution staring me in the face.  If I knew she would be stable this year, I would put her in a nurturing Christian school, but would they even accept a bipolar student?  They don't have to, and she doesn't have the greatest track record as far as consistency.  Is public school going to be a safe place for her or one of too many distractions and temptations.  When I read in the emails from the bipolar support group about what other bipolar teens are getting themselves into in public schools, I shudder to think of Caroline facing those same temptations.  She is a great kid at heart, and wants to walk the straight and narrow.  But she never does well around kids that are going the wrong direction--she gets sucked in right away.  And somehow she lacks discernment about which are the right kids to hang with.  The secular private schools around here are too challenging for her academically.  So I am quite stressed out over making the wrong move and about the financial implications.

That said, if we did do private school for Caroline, we would still pursue services through the city community services board.  She still needs occupational therapy and probably one-on-one tutoring for math.  I found an organization here in our area called Southeastern Skill Builders that helps kids like Caroline with social skills by forming groups and taking them on outings, have group therapy, practicing reading social cues, etc.  A new group for her age starts in August.  I hope we can get her in there.  She definitely needs social help, so maybe she could finally make and keep a nice friend.

But the really good news is that Caroline continues to thrive, and we are getting some nice down time as a family.  Soon we will start family therapy to help everyone learn better ways of interacting with Caroline and dealing with the stress of having a mentally ill sibling.  We definitely need that!

Monday, June 8, 2009

A Questioned Diagnosis

I belong to an online support group through the Child and Adolescent Bipolar Foundation.  The moms in this group have been a huge source of information and encouragement to me.  Often, they have been through medication trials that we may be facing and have a lot of anecdotal advice.  Yesterday, one of these moms, who works with a neurosurgeon, emailed that she would caution me about the QEEG and the diagnosis of "cerebral dysrythmia."  She says that in the field of neurology that diagnosis would refer to epilepsy, and that the report we received could be interpreted differently by other doctors, basically stating that the report may not be valid.  So now I am wondering if the doctors at Meridell know what they are doing.  They seem very confident, but now I have this other opinion and I don't know what to think.  Caroline's doctor put her on the amantadine in response to this "abnormal" QEEG.  Yet the amantadine appears to be making a significant difference.  Even if the QEEG is frowned upon as somewhat suspicious, I guess we will just keep her on this new med.  All I know is that she is so much better.  I hope one day that we will be able to really pinpoint in sophisticated brain imaging exactly which meds will be the most beneficial.  Wouldn't that be nice and easy!  Everything regarding the treatment of  early onset bipolar disorder seems to be trial and error, lots of guesswork.  My bipolar adult friends go through the same cycle of trying different med combinations, having it work for a while, and then something changes and the meds stop working, and so something else is added or changed.  Not an easy life at all.

Sunday, June 7, 2009

Setting Goals for our Family

During our weekly meeting/phone conference with both Caroline's psychologist at Meridell and our local psychologist, Bill and I discussed setting some goals for our family while she is away to try to undo some of the bad patterns of relating the girls have developed in reaction to Caroline's unpredictability.  We can't blame everything on Caroline's mental illness, but certainly we have all developed our own negative and destructive (and self-protective) ways of relating to each other.  Not that it's all bad--we have a healthier family than most I think because we have a healthy marriage, and we adore our kids, but we are a wounded family, wounded by circumstances and our own selfishness to which we are all inclined.

I have been thinking about how the different members of our family "fit," what each person adds to the family in terms of personality and gifts.  I have been struck by the thought that Caroline really hasn't "fit" at all.  I don't mean this in a disparaging way, as if to say we don't want her to be a part of our family, but rather that she has brought little to our family that has been positive in the last few years, and thus has been ostracized by her sisters, held at arm's length (maybe more like a ten foot pole), and my way of keeping the peace at home had been to put her in the car and take her elsewhere, leaving the others behind.  Not the healthiest way of dealing with her, I know, but we have been in desperation mode for years, and in the moment, when she is melting down in a way that frightens her sisters, the fight or flight mode kicks in, and I grab the keys and tell her to get in the car, and we go for a drive until she is calm.  So her sisters resent her as the person who takes Mom away from them, and they are at home picking up the pieces.  This scenario certainly looks as though the person with all the power in our family is Caroline.  

So we need to take back the power in our home, with Mom and Dad firmly in charge, and invite each child to take their place in our home as equal siblings, to feel secure and assured.  Obviously this is easier to say than do, but with the positive changes we are seeing in Caroline, we hope that it will be easier than before.  Her sisters will have to adjust to the difference in her, as well as adjust to our better ways of handling them.  We have begun to talk to the younger two about all of this, and that we expect them to grow in some maturity this summer.  

Our oldest needs some intense counseling, we have decided, because the seeds of resentment were sown more deeply in her.  Caroline wrote her the sweetest letter, expressing that she is aware of how bad things have been between them and that she wants to be reconciled, to be friends, not just sisters.  With all that Caroline has experienced, her emotional IQ is pretty high compared to her older sister.  Resentment and anger stunt us if they are not dealt with, and the result is emotional dwarfism.  I think Elizabeth feels at her core, that she needs to reconcile, but she is afraid when she hasn't been able to trust Caroline one bit.  I don't blame her at all, but the last thing we want for them is to be enemies as adults.

Anyway, back to how Caroline fits into our family, her role so to speak--whereas she hasn't played a positive role in our family in years, we feel that she can in the near future, especially as we hear the changes in her voice and demeanor when we talk to her.  I remarked to Bill last night after she hung up that she actually sounds like a normal teenager now.  Gone is the pressured, depressed speech that we had become so used to hearing.  She sounds so healthy and happy now, like she was so long ago.  I am remembering now how funny she can be, and how compassionate she is.  I think her role will evolve as she brings her beautiful gifts to the table.  I don't expect that she won't be bipolar, but I can feel hope now that our family can include her emotionally and physically, no longer isolated, but together with us where she belongs.  

Wednesday, June 3, 2009

Back From Meridell

We are back from visiting Caroline at the Meridell Achievement Center in Liberty Hill, Texas.  All in all it was a great visit and Caroline seemed much improved in every way.  She was so much more relaxed and in control of negative responses than we have seen her in a very long time, and looks great having lost about eight pounds. 

Our visit began with arriving in Austin around 11:30 on Saturday, and then driving about half an hour to Meridell in a rental car.  During the car ride, I began to feel anxiety creeping over me.  I have so enjoyed the time I have had free of the daily stress she has brought into our lives. I wasn't exactly missing her or looking forward to being with her for two days.  I love her, I just feel gun-shy around her.

We pulled into the RTC, and the campus looks like a nice camp more than a medical facility with lots of wide open spaces, and big oaks providing the only and much needed shade.  When she burst out of the door she went straight for Bill's arms, not a surprise since she is a daddy's girl, then she hugged me looking supremely happy.  The nurse had to give us her meds for the evening to take with us since we were taking her off-campus.  While she was explaining the meds to us, I felt myself beginning to feel quite anxious, and detached.  She must have noticed something, because the nurse asked me if I was OK.  I realized I probably didn't look thrilled or something.  As the afternoon unfolded, however, my fears were assuaged since she was obviously quite different than she was before she left.  Never having seen Texas, I would have to say that it is hot, dry and dusty!  I saw more wild life than I wanted to--a tarantula crawling across our hotel parking lot and a snake at the RTC.  Anyway, we picked her up and took her back toward our hotel where there was a very nice mall and restaurant complex.  We took her shopping for a few new clothes, and other items, and then we went to a nail salon where she and I got pedicures and manicures.  She needed some pampering!  We had dinner later at a great Asian place.  Throughout the afternoon and evening, she was so pleasant. We had to get her back by 9:00 for bedtime, and after dropping her, we remarked to each other how much we enjoyed that day together with her.

 On Sunday, we considered going to church, but since we didn't know where to go, we decided to just pick her up and go into downtown Austin to explore.  Initially, she seemed again relaxed and sweet.  We were a little late in picking her up and by the time we found the right streets in the city, it was lunchtime, and she began to get a little fussy about being hungry and the heat.  We found a place to eat with helpful waiters who told us where we needed to go to see the best of Austin. 

It was a very hot day, so we decided to go down to a nearby park where you can rent canoes and paddle up the blue-green river that winds around the city.  Caroline usually loves any outdoor adventure, but she seemed quite bothered by the heat and grew impatient, noticeably more so than the day before.  She became difficult during our canoe ride, and Bill said he was beginning to have flashbacks to how it was at home with her.  After letting her swim in the lake following the canoe ride,  I realized we had forgotten to give her the noon dose of the new med Amantadine.  She was three hours off schedule, and we could see that her ability to cope with distress had declined without this med in her system.  So we gave her the late dose, and within about an hour she was calm again, happy, and controlled.  Thus this affirmed that the new drug truly is the "miracle pill" that Meridell calls it.  The rest of the afternoon and evening went much more smoothly and she was happier in general.

On Monday morning we had three meetings scheduled, one with her psychologist, another with her team of teachers, and the last with her psychiatrist.  We did spend some time with Caroline, having lunch with her outside on a glorious day under one of the oaks, and playing in a game room.  We could tell she was growing increasingly sad and anxious about our leaving that day.  

The meeting with her psychologist was great.  She is very likable, obviously committed to caring for the kids she works with.  We told her about our time with Caroline over the weekend, and how well it went.  We had been given some goals for our time with her at the start, all of which we accomplished.  We had tried to implement some stronger boundaries for Caroline and reinforce the skills she was learning at the RTC while she was off campus.  Bill was better at that than I was.  I just wanted her to have fun and enjoy being with her parents, while he wanted to approach the time in a more deliberate way.  

The meeting with her teachers was very encouraging.  They all seem impressed with her natural academic ability and her work ethic, which is great to hear.  They had no complaints and all said she was working at or above grade level.  Yay!  Meridell finishes the school year June 29th, and they do have standardized testing required by the state, so we will be quite interested to see how she does.  Maybe moving on to 7th grade is more than a possibility, which would be so heartening for Caroline and for us!  Especially after reading the results of her initial neuro-psych-educational testing done after her admission.  

These tests are all ones she has had at least four times before, at the age of 5, 7, 9 and 10, and now at 13.  They measure intelligence and ability, as well as screen for learning disabilities and psychological disorders.  What has been very sad for us to read is how her general IQ scores have declined over the last eight years.  At the age of five, her IQ was in the very superior range, and now, she tests in the low average range.  What has brought her scores down has been her declining processing speed.  She demonstrates very big deficits in processing speed and executive functioning, and thus she has a definite learning disability (Not Otherwise Specified is the official label).  She had so much potential to be a high-achiever like her older sister, but a lot has slowed her down.  She still has great potential, but she is going to have to work at a slower pace with a lot of accommodations to help her achieve her goals.  If she didn't have bipolar disorder, and this brain abnormality, her life would look so different.  

We managed to track down the main psychiatrist at Meridell.  He is hard to get on the phone and in person, our only complaint so far about this RTC.  When we did sit down with him, he was quite obliging and apologetic for being hard to get catch.  We told him about the incident with forgetting the Amantadine, and how that affected her.  He was quite glad to hear that the drug worked that well.  He said that many of his patients have benefited greatly from this drug, which is so often overlooked by many psychiatrists.  It is an old med that is used generally for other things, not to enhance the electrical connections in the brain.  He also said he wants to introduce either Trileptal or Tegretol into the mix because of their anti-seizure mood stabilizing properties, and get her off of the Trazadone and Klonipin , which can be cognitively dulling.  We told him we were open to whatever he wanted to try, but that she was as stable as we have seen her in years.  She is on a lot of meds, so simplifying them would be great, as long as this doesn't set her back.  The doc said he thought Caroline would only need to stay another six weeks, which was surprising.  We kind of hoped for longer but if she is significantly better, I know our insurance won't pay for more days than necessary.  With her academic confidence restored, and this new miracle drug in her mix, she may benefit from coming home and starting at a new school from the beginning of the year, instead of coming in halfway through the fall or whatever.  

After this meeting, we made a mad dash to and through the airport because we had spent a little too much time on the campus, but we got to the gate on time and got home safely, feeling satisfied that the staff at Meridell were caring and doing a great job with our daughter.  

Speaking of a new school, we are feeling the pressure to really move fast now that this trip is behind us (and a three day trip to DC that I took with one of my other daughters just before this trip) to get our house on the market so we can get everyone settled in by September.  We have had a lot of distractions up until now, but it's full speed ahead, especially if Caroline is coming home much sooner than anticipated.