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.
Sunday, January 31, 2010
Our bipolar kids often struggle to feel calm. Their brains are extremely overactive in the area of emotions and there are times when they need a quiet calm place to which they can retreat. Also, quiet thinking can be helped by certain aromas and tactile therapy, as well as soothing music. I have put a link to some calming tools offered through Flaghouse for sensory issues below under resources. Take a look! They have everything from aromatherapy, to rainsticks, to weighted wear.
Posted by Megan at 8:29 PM
I have this idea that I can't stop thinking about: a weekend national conference for parents of bipolar kids and teens that would be at a very nice resort type of retreat center, with seminars led by experts in areas of education, psychology, psychiatric medication, social skill building, self-care for parents, navigating health insurance and state services, etc. I would include time for small focus groups, and free time where we could compare notes, make new friends, and enjoy relaxing at a spa getting pedicures, facials, or eating out, and exploring a fun new city without our kids! I think I will start working to make this happen because I think it is so very much needed. I hear from so many parents who are struggling to get the right help for their children, and time for themselves, which is nearly nonexistent. Maybe we could have "vendors" so to speak from special summer camps, residential treatment centers, and therapeutic school reps, and a book table, and resource center. I have so many ideas for something like this. We have a wonderful hotel and conference center nearby with an attached spa and a five star restaurant, about 20 minutes from a beach. Maybe I could look into their rates and availabilities. I will contact CABF also to see what kind of support I could get from them. Wouldn't it be great to hear from Dr. Papalos and Dr. Wilens, and many others who are experts in all things related to these special needs kids? Cinda, I need to get you on board!
Posted by Megan at 4:15 PM
Saturday, January 30, 2010
I have been researching on the internet and through the CABF online support group for summer camps specializing in bipolar kids. There aren't a lot of camps out there that are therapeutic, not the tough-love, wilderness camps types for juvenile delinquents, but I found a couple of good ones. I have listed them under Great Resources below with the links. We may send Caroline to one of them this summer. Two of them are definitely geared toward bipolar kids and teens, and the other is for any exceptional child who is stable, but it looks like bipolar disorder would not be foreign to the staffers.
Posted by Megan at 6:54 PM
Especially when you live in a place that rarely sees more than a few flakes once a year. We have got a real dumping of more than eight inches, and my kids and my husband have been outside for most of the day, having a grand old time! I am thankful today for a husband who loves to play as much as my kids do! I am staying inside, just enjoying the view of all of their antics.
Posted by Megan at 2:41 PM
Friday, January 29, 2010
Just a note that although we were eager to try the Neuro Science supplements, we decided to take her off of them shortly after starting them last week because we couldn't be sure that her instability was being caused by the school situation, or a need for more Lamictal or if the new supplements were to blame. We don't know really, except to say that she is much cheerier with more Lamictal. We will wait until the summer to try the neurotransmitter "support" supplements again, when she isn't in school. Our goal right now is just to keep her going and to finish the 7th grade, and we feel that the med mix established at Meridell has been the best she has ever had, thus we don't want to introduce other factors right now. We can experiment later when the stakes aren't so high.
Posted by Megan at 6:29 PM
Thursday, January 28, 2010
After I wrote that blog last night, the evening continued on, with all of my kids, and husband, tiptoeing around me because I had really lost it. We all apologized to each other after everyone had cooled off. At one point, I got in Caroline's face, so to speak, and told her vehemently that we were not going through this again, that we would not be changing schools mid-year, that she needed to buck up and finish out the year, through gritted teeth.
I don't recommend dealing with one's child this harshly, but sometimes, when the going gets tough, the tough have to get going. I felt that I had to lay it out there for her, in stark terms, so that she could at least understand how adamantly we feel about her trying to see it through even though it is REALLY HARD. I didn't know that this would work, or that anything would change, but after I lit into her, she got very quiet. Then, after a long silence, she apologized and said that she decided she would go to school the next day and try very hard to finish out the year. I was quietly surprised, and didn't overreact, but just said thank you.
She went to school today, didn't call us to pick her up, and played in the basketball ball game tonight. I don't know if this will last, but it was a very nice day today, peaceful. We realize that she could change tomorrow, but we will take today for what is was worth. Thank you to everyone who left encouraging comments, and who prayed for her and for us. Yesterday was a dark day, and I needed the comfort of others.
Today, I got SOOOOO much done in the house, and it feels SOOOOO good to declutter and get things organized. I am following the Fly Lady method. When a child is mentally ill, the house tends to get out of control when they are not doing well, which has been showing since December. My house was in such disarray, and it was making me crazy too. My mental health is always so much better when my house is organized, and my family is happier too.
Posted by Megan at 7:09 PM
Wednesday, January 27, 2010
Because I am not an expert in medications pertaining to ADHD, or Intuniv, I wanted to post a great resource for those with questions about Intuniv and other ADHD meds. I found www.chadd.org and www.help4adhd.org which are related sites that have an online community available to compare notes, as well as the latest research, etc, even summer camps. Check them out! I will also add these to my resource list on my blog.
Posted by Megan at 7:27 PM
That would be Caroline, and me, and everyone as a result. She is declaring that she hates her school, doesn't want to go back, didn't go today, had the biggest meltdown in a long time last night, and is acting very depressed and very agitated. I am freaking out. I freaked out at her today, at everyone really. I am experiencing the PTSD from having this happen year after year at the same point in the year, really, a total deja vu of the worst kind. She does well through the fall, then tanks in January or February, the social situation at school becomes untenable, and she ends up hospitalized and falling behind academically. And Bill and I and the rest of the family end up traumatized too. I feel like I am becoming unglued, while watching her become unglued. This is not a good place to be in. The weight of her illness and inability to stay in one school for a whole year crushes me, even as I am trying to help my other three navigate their lives too. Tears tonight, a lot of tears. I don't know whether the increase in the Lamictal will solve her instability, or if this is more that she really hates this school environment. I am exhausted emotionally. Bill threatened to take her to the psych hospital in Richmond if she didn't stop acting so out of control. That was a bad move. She lost it at that utterance. God, please help my daughter and us as a family!
Posted by Megan at 7:07 PM
Sunday, January 24, 2010
We want to go on a 2o hour drive to Florida for spring break week. We found an amazing deal on a condo rental in Destin, really cheap compared to everything else we looked at, including military deals, right on the beach, swimming pool and tennis courts included. With our oldest soon to go to college, we are bemoaning the fact that we have had very few "family" vacations over the last 16 years of her life that were just our immediate family, building memories together, and soon she will be gone. So we made it our goal to do something together this April, but to do it as cheaply as we can. Since Caroline wouldn't tolerate a super long car ride, we think we will fly her and me down there, and everyone else will drive in our new minivan with the DVD player and headphones! So now I am waiting for the airline prices to drop, because right now they are not cheap at all. When you have a special needs kid, you have to plan trips carefully or pay the price.
Posted by Megan at 9:31 PM
Saturday, January 23, 2010
Yesterday Caroline forgot to take the new form of Lamictal in the morning. She told us this last night and the weird thing was that she was cheerier yesterday than any of the days the previous week, just happy and smiling. And Lamictal is supposed to help with depression! Perhaps Caroline would have just headed right into mania if she didn't continue to take Lamictal. I don't know, but she was back to glum today. Confusing. We have started her on the supplements from NeuroScience, namely the TheraCor, the TravaCor, and the CalmPRT, as well as the progesterone supplement, Progon. She is to take these for a month before starting some other ones as well. The only difference we have noticed after the first few days is that the CalmPRT, to be taken in the morning, makes her so sleepy she conks out. The directions were to give her 3 to 4 capsules, but I think we will have to back down to 2 or 1 if she can't stay awake in class. I know that the differences we are supposed to see with these supplements will take weeks and months, as we were told, if they work at all. Those four bottles cost us $236! At this point, we are trying anything to see if we can reduce the number of psych meds she is taking every day, which is quite a lot. If the NeuroScience stuff works, the cost will be worth it. The first psych med I would like to either reduce or get her off of is the Seroquel, which has been blamed for causing diabetes and gross weight gain, which we did see when she was first put on this anti-psychotic drug. She is on Metaformin for prevention of metabolic syndrome leading to diabetes, but it hasn't made much of a difference as far as weight gain. Her weight has crept up from this summer, from 118 to 128, which is still better than the 138 she was at before going to Meridell (she is only 5'2".) She does seem to be hungry ALL the time, which is typical of bp kids anyway.
I just talked to the principal of the Christian middle school my oldest attended. We are thinking of switching Caroline to another school next year because we don't like the very small choice of friends at her present school. This Christian middle school only has 56 seventh graders, so certainly there would be more opportunities for making friends there. I may go to the Open House tomorrow.
Posted by Megan at 4:01 PM
Wednesday, January 20, 2010
Well, depression has certainly reared its ugly head this week. Caroline has slid into the dark pole of bipolar disorder. Today I took her to the psychiatrist, who put her on the brand name of Lamictal instead of the generic by ordering the orally disintegrating tablets. Apparently the generic version can be less effective than the brand name in this case. Hopefully this will do the trick, if not, it could be that we need to go up to 375 mg instead of 350mg. Lamictal is the one mood stabilizer with anti-depressant properties. We will give this a week before we move up to the higher dose. In the meantime, we will restart the light therapy, which we had stopped a few months back when she seemed to improve with the lamictal increase in the fall. She hasn't been able to stay at school in this sort of funk because she just wants to cry all day. Yesterday she forgot to turn in all of the make-up work due yesterday for the end of the quarter even though she had it with her. I am hoping the teachers will be understanding and accept it today when I go there to discuss it with them. If not, that will be such a bummer because she worked so hard to catch up after being sick. She is hating life right now. This afternoon she sees the psychologist, which is good, but I think this is 50% medication related and 50% related to the stress of being at a school with no friends. She is begging to be homeschooled. This is truly the last option for her. I just don't know how this is all going to turn out.
Posted by Megan at 10:14 AM
Monday, January 18, 2010
Nothing is more painful than to watch your precious bipolar teen daughter go so many years without a single close friend. Any friend for that matter. She is able now to make and keep friends, we believe, but she has no opportunity, between the predominance of boys in her grade at school, and the only other few girls there are cool at best, and at worst just plain mean. Similarly, the youth group at our church is predominantly made up of boys with the few other teen girls uninterested in Caroline because they have known her since she was very young and are wary of Caroline's past strange behaviors when she was unbalanced. Our neighborhood has no girls of her age in it, and so she struggles on weekends with what to do with herself. She is sick of having only adult "friends" who love and care for her, but who aren't peers. She is a very lonely girl. Today was another day of mourning the lack of anyone she could call up and hang out with, and we as her parents are at a loss as to how to fix this sad situation. Club lacrosse will start soon and so that may be a venue for making friends, but her last club soccer experience was a disaster socially, so we are not so sure this will be better. Oh, that God would bring one friend into her life that she could trust and not see disappear after a month!
Posted by Megan at 12:58 PM
Sunday, January 17, 2010
Once a month, Caroline is supposed to have a 48 hour "holiday" from taking the Amantadine. The last couple of times went without a hitch, no real behavioral differences. This time, we noticed a definite increase in negativity, defiance, and impulsivity. We started her back on the Amantadine after Day 1 of the break. Perhaps she can go longer without the break, like maybe six weeks instead of four. The reason the doc gave us for the "holiday" was that her dopamine producers would become overly taxed. We will ask the psychiatrist at the next appointment this week. All we know is that we want her to stay as stable as she has been since her return home from the RTC in August.
Posted by Megan at 3:21 PM
Friday, January 15, 2010
I don't know if you have this problem, but dinner time for us has always been stressful because of the difficult dynamics between our kids. With Caroline so easily irritated by noise, and Mae seeming to do her best to whine her way through the meal, we had come to dread mealtimes. I decided we needed some focused conversation, so I bought Dinner Games from MindWare. I think with shipping it was about $24.00 for a small index sized box full of cards with different conversation starters and dinner games. We have used this for about a week and the kids LOVE it. Instead of fighting and arguing ("She looked at me funny! She is hogging all the bread!") we have a much more pleasant time finding out more about each other, and being silly together. I put the link to the Family Dinner Games website at the right under Resources. We need all the help we can get!
Posted by Megan at 7:58 AM
Thursday, January 14, 2010
As I am riveted by the pictures of the destruction in Haiti, of the untold suffering these poor people are experiencing, I am reminded of the fact that as much as we deal with suffering on a daily basis, it is small in comparison with the stark situation there. We have a roof over our heads, food in the pantry, expert medical care only minutes away. I wish I could be there to help, I really do. The psychological damage done there will last for so many years to come, after the physical damage is repaired, which may never be completed. We pray for the Haitians.
Posted by Megan at 8:02 PM
Wednesday, January 13, 2010
I don't know if this is true for your bipolar child, but from what I have read in all the literature, "pressured speech" is characteristic of these kids. I am not really sure what pressured speech looks like, but for Caroline, it is perhaps the ability to talk non-stop about topics on which she is an expert, and perhaps then some. She will talk for minutes on end without picking up on any cues from her audience that they are 1. bored 2. busy or 3. doubting the veracity of her statements. This is really quite a social problem for her, as I have observed. I know another bipolar adult fairly well who has this same problem. They will not get the clue that their turn is over in the conversation and wait to hear what the other person has to say. And, they will skip so quickly from subject to subject that you don't realize they are on a completely different topic until you realize that you are completely confused as to what they are talking about now. Caroline does this, and maybe this is the result of the "racing thoughts" or her ADHD. I don't know but it is one of the more annoying penchants she has. We love her though, and even if half her stories are tall tales, we will still listen. We may question her a little, probe the facts here and there, but still listen.
Posted by Megan at 9:28 PM
Monday, January 11, 2010
I just wanted to share with the other parents out there who now have their child on the ADHD med Intuniv that we decided to divide up the 4mg dose into two doses, one before school, and one at bedtime, to spread out the benefits over the whole day. The doc said that it lasts 24 hours, but we are not so sure that is the case. We have seen better results with Mae in terms of more consistent calmness and focus with the divided dose.
I am back in full-swing today with homeschooling our third youngest, Jane, who was sick all last week as well as was Caroline and Mae. Elizabeth went back to school for a half day today. Hopefully the mono symptoms will improve with going back for only half-days for a while. She is freaked out about her grades and failing classes automatically due to too many missed days. The school district here is draconian about missed classes at the high school level. If you miss seven of any one class you fail it unless an attendance appeal is approved, and the appeals process happens twice a year. Doctor notes are the only excuses allowed, no notes from Mom and Dad. I understand their push to eliminate skipping school, but when your child has a long-term illness, it is a pain in the butt.
Posted by Megan at 10:57 AM
Saturday, January 9, 2010
Great. Caroline missed this whole week of school because she was sick, and apparently it was a week of review for mid-terms in every subject. Not good. Thankfully she had math tutoring today, and was able to review the things that she is weakest in. Spanish will be hard, because that is her hated subject. I think I will ask the Spanish teacher to allow her to take the exam on Friday instead of Tuesday so I can review with her. I did speak with the assistant principal about the mean texts and and we hope that Monday will show an improvement in behavior for these two "mean girls." It's too bad that here Caroline is at her most stable in years, and yet she has to deal with a stupid situation like this. Nothing ever goes just right for her it seems.
Posted by Megan at 12:46 PM
Thursday, January 7, 2010
I know there is no perfect parent out there. I was very idealistic about my mothering capabilities when we first embarked on this adventure called parenting. But when I see the depth of my failures sometimes, my inate ability to be self-centered and sloppy in my child-rearing, even unkind and unfair, I am arrested by the dichotomy between my desires and my actions. Yes, I have challenging kids, yes we have a difficult set of circumstances, but the greatest stress I encounter is mine that I create unneccesarily by not thinking before I react.
Posted by Megan at 12:52 PM
Wednesday, January 6, 2010
Tonight Caroline received a nasty text message from one of the two girls who have been so mean to her all fall. I am blocking their numbers. I guess that the big pow-wow the administrators had with them just before Christmas break didn't have the desired effect. I just wrote a long letter to the principal threatening to withdraw her. Well, threaten is a strong word. Perhaps warning is a better word. I know they want more parents like us involved with their school (they have said as much). I don't want these girls to be expelled, just that they would learn self-control and kindness. I feel sorry for them, really. I can't believe that we would find the "perfect" school for Caroline only to have it ruined because of two very insecure, unforgiving middle school girls. I want to call their grandmothers and give them a tongue lashing, but I think that the school should do that. Caroline is reluctant to return to school after being sick. I can understand why. Bipolar disorder is bad enough, but to be bullied is unacceptable.
Posted by Megan at 9:08 PM
Tuesday, January 5, 2010
I have three kids home sick today. Well, Jane is always home since she is homeschooled, but it feels like Christmas vacation isn't over yet. I woke up with a major migraine. Slept in until 9:30 am today. I can seem to shake the headache or feel more awake. So much to do too. Life doesn't cooperate with our own plans most of the time, does it? Time to take down the Christmas decorations. Maybe my kids will get the message that they need to get better and go back to school now....
Posted by Megan at 12:40 PM
Monday, January 4, 2010
Caroline didn't go back to school today due to a nasty cold. I do hope that when she does return, those two girls will be considerably nicer. If the ugliness (bullying) continues, and nothing changes, then we will look for another school at the end of January, before the start of the spring semester. I really hope that we don't have to do that. That would be a major bummer.
Sunny and freezing cold here. I found out I accidentally paid Caroline's private school tuition twice at the end of December, and I can't get the bank or the finance service to reverse it. And then we found out that a new transmission for our minivan will cost $4000!!! This is not the right time to see over $4000 leave our accounts. I told Bill maybe I should get a part time (actually I meant to suggest a full time job), but he really doesn't want me working outside the home because of the myriad of doctor's appointment Caroline has, in combination with three others', and the fact that we never know if Caroline won't be able to handle school again, and need to be homeschooled, or whatever. Oh well. I see his point.
I need to think of more creative ways to bring in money out of the home. Thinking, thinking....
Posted by Megan at 2:07 PM
Friday, January 1, 2010
Three more days and counting until Caroline goes back to school! All of them but one, whom I am homeschooling. She's the easy one to homeschool, Jane that is. I tried homeschooling Caroline but she does so much better with tighter structure and other teachers. Her New Year's resolution was to stay at one school for an entire year. Kind of sad, but a good goal. We hope that she can finish an entire year at one school for a change. Maybe even for all of middle school. We shall see....
Posted by Megan at 1:17 PM