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Bipolar Tuesday: The “L” Word Feels Final
It’s not that I doubt LeBella’s diagnosis. I know that for us, Early Onset Bipolar Disorder is a reality. I knew this is what we were dealing with before the first doctor said so.
I know that medication is so much trial and error, and we have tried so many. Sometimes we get nothing, sometimes we get a scare, and often? We get super fabulous wonderfulness….that only lasts for a limited time. ANd so we try again…and again…
Even knowing all this, I still felt a sense of…finality? When the pdoc dropped the “L” word.
I had all ready done extensive research on it. I had considered it our last option, our fall back when everything else fails.
When you (or most people) think of bipolar disorder, Lithium tends to come to mind. So, for me, this makes everything more real, more final.
So we started the Lithium last week.
I haven’t seen a great improvement, really she’s been crazy manic but not so mean most of the week. We go back to the pdoc tomorrow to adjust levels as needed and we’ll go from there.
After my thoughts settled down, I confess to myself that there is no finality yet. Nothing else is working now. That doesn’t mean something else won’t work better later.
How about you? How do you feel about your child’s treatment? Did you have a moment like this, where you felt overwhelmed by finality?
If you or someone you love is raising a child with bipolar disorder please let them know they can find support and resources at www.bpkids.org as well as my online support group: My Kid’s Bipolar, Now What??
Related Articles
- What Can I Do to Help My Bipolar 12-Year-Old? (everydayhealth.com)
Sap Happy Sunday: Jacob’s Cure
I had originally planned to post something else today, that was submitted by a reader, however yesterday I came across a story on the SITS Girls site that I really want to share. I know you guys might be sick of me begging you for Pepsi votes but the truth is Pepsi is giving away money to change lives and all we have to do to help is click! So please, I’m asking once again for you to cast your vote for a worthy cause:
About Jacob’s Cure
Overview
The Jacob’s Cure Research Summit & Family Conference will advance science by uniting the research community with the patients they aim to cure. Additionally, the Canavan families have never had an opportunity to meet each other, share stories and gain the support that can only come from others experiencing the same day-to-day trials and tribulations of life with a Canavan child.
The additional funding will go directly to our research lab for our stem cell clinical trial. Already Jacob’s Cure’s work in gene therapy and pharmaceutical research has slowed and in some cases halted the progression of Canavan, and has also lead to treatments in more commonly known disorders such as Parkinson’s, ALS and Multiple Sclerosis. Stem cell research such as ours may very well revolutionize the manner in which “white matter” neurological disease is treated, and will be a model for their cure.
To help please visit the Pepsi Refresh Project!
Writer’s Workshop: Steppin’ Outside the Box
3.) Steppin’ Outside the box (describe a time when you went out of your comfort zone)
(inspired by Sherri from Matter of Fact http://www.matteroffactsite.blogspot.com)
Steppin’ Outside the Box
(Alternately titled: Special Kids Need Special Moms)
Unless you’re a recluse (sorry if that means you) then you have probably stepped out of your comfort zone many times. Just growing up is a series of stepping from one comfort zone to another. Starting school for the first. First love. Graduating high school and moving on to college. Getting married. You get the idea. Then there’s Motherhood. The big M. For some of us this transition was as natural as breathing. I always wanted to be a mom. Mothering came to me naturally.
Even at 17. I was a breastfeeding, baby toting, attachment parenting Mama. And, I was good at it. If I didn’t have an answer, I could get it quick. ‘Cause I’m resourceful like that. When LeScholar was 2-ish, I thought “Hey, let’s kick this party up a notch! How hard can one more be?”
Shortly thereafter, LeArtist makes debut into the world. Ok, a little harder than I expected, but not too bad. By 6 months, I had the hang of this whole toddler/baby game. THEN, God said, “Hey, let’s kick this party up a notch!” (And, really, 6 month old or no 6 month, what was I going to say? It was GOD people!!) So, 9 months later we presented LeBella to the world.
So, there I was, 21 year old mother of 3 under 3. Breastfeeding, co-sleeping, teaching preschool. I was totally rocking this whole mommy thang. I was on top of the world, yo. Do you know how high that is? High enough to give you an effervescent feeling in your brain, right before reality kicks your boot-ay and you fall flat on your face.
By 18 months old, there was not a person around who had the ever loving patience to handle the vivacious effervescence of LeBella. She made everyone else’s “Terrible Two’s” look like a walk in the park.
I was truly out of my comfort zone. I spent my days telling myself I was a sucky parent and believing everyone else thought so, too. As she got older things got worse. I would cry myself to sleep thinking, “I can’t do this anymore. I love this child with all my heart and soul but I can handle her. I can’t parent her.” Then, in the morning I would wake up and do all over again. Cause, I’m a mom and that’s what we do, comfort zones be damned.
When LeBella was 4 ½ she had an emotional breakdown. I don’t even remember what triggered it. All I remember is the unbelievable sorrow in those big brown eyes as she grabbed a knife, placed it to her wrist and said, “I just want to kill myself. I don’t deserve to be alive.” There was anger in her voice but it was a façade. An act to hide the incredible internal torment this child was suffering from. And I had let it get this bad.
I started making appointments right away and doing my own research (‘Cause that’s just how I roll). I had never heard of Pediatric Bipolar Disorder but as soon as I came across it, I knew.
For a long time parenting a special needs child was definitely out of my comfort zone. Those moms are smart, and strong, and resourceful. They’re knowledgeable about their kid’s illnesses. And I’m slowly realizing, “Hey, that’s me, too.” I’m getting my mommy confidence back one step at a time. Every success for LeBella feels like a success for our whole family.
Every other family we can help in any way feels like a success for the world. (Not because I’m THAT incredibly awesome, but I don’t believe in the ‘Pay It Forward” concept).
You know the great thing about being out of your comfort zone? That’s all it is. A zone. One brief area out of a vastness of potential. Every step you take leads you closer to the greatness of yourself.
This post is also linked up for the Nerd Mafia’s WOW.
I double dipped.
**The Motherhood Umbrella is looking for Guest Posters! If you are interested please check out the “Be My Guest” page.
**If a child you love has been diagnosed with Pediatric Bipolar Disorder please visit www.mykidsbipolarnowwhat.ning.com
Posted with love by Mommylebron
Update on LeBella
It’s Bipolar Tuesday once again! Before I post today’s topic about handling triggers, here’s a briefing on what’s been going on:
A few weeks ago LeBella’s psychiatrist sent her for her blood work. She has it done every six months to monitor the levels of medications in her little body and to make sure her tiny liver is handling everything okay. Some medications like; depekote (which she was on) can be very hard on the liver and can cause serious damage if not closely monitored.
She’s so great about getting her blood work done. The very first time was traumatic for everyone involved. After that I sat her down and explained the reasons for it. Her brain is missing some important chemicals it needs to function properly. She takes medication to replace the missing chemicals and she needs blood work to make sure they are working and not making her sick. She’s been a perfect patient ever since (well except for that one incident with Nurse Dumbass.)
Usually I take her to the lab to get the blood work done, then at her next monthly appointment her psychiatrist confirms that he received the results and that’s that. Except this time I received a phone call. Every mother knows this is one of those times you do not appreciate a follow up call from the doctor. The doctor was concerned with some of the results and asked me to come in right away to discuss them. I was a nervous wreck.
We went in to the office the next day. His first concern was that her Depakote levels were high. This indicated that the depekote levels were too high and they would begin stressing her liver. (So we took her off the Depakote.) Depakote is a medication used to control mania in people with bipolar disorder. We did not replace this with another medication since LeBella’s out of school for summer.
The next concern he pointed out was that her T3 (triiodothyronine) and T4 (thyroxine) levels were too high and this indicated there is an issue with her thyroid. The irony of this is that I am just becoming acquainted with my paternal family and my Uncle Donnie gave me the low down on our family’s medical history. Nearly everyone has a thyroid issue! So, we left there with the results and headed to her pediatrician (whom we adore) and he gave us a referral to an endocrinologist.
So, for our next stop we headed out to Orlando. The endocrinologist was extremely nice and very thorough with her explanations. She suspects she has hyperthyroidism but needs additional blood work to confirm. This both good and bad. It’s bad because, obviously, it’s a health issue. It’s good though that we know. The thyroid affects more than a person’s ability to gain or lose weight. Hyperthyroidism can mimic and /or exacerbate bipolar symptoms. Stabilizing her thyroid could, in effect, help stabilize her bipolar symptoms! (For more information on thyroid diseases click here.)
We also went back to see the psychiatrist because LeBella has been unstable all summer and she goes back to school in 2 weeks. (She must be stable while in school!)He increased her Abilify and ordered more blood work to recheck her depekote levels. He wants to put her back on the depekote but I’m not sure how I feel about that…
That brings us to yesterday. I took LeBella back to the lab. Between the two doctors she had to have 10 tubes of blood drawn for tests! She’s such a trooper! I pray between these two great doctors we can come up with a new, more effective treatment plan. I’m tired of seeing my baby so miserable……
Our regularly scheduled BT post will be up later this afternoon. I just needed to get this off my chest…
Posted with love by Mommylebron
Bipolar Tuesday: But wait…there’s more!
I’m sitting here, thinking about tomorrow and worrying.
My daughter was diagnosed with Bipolar Disorder in the summer of 2006. We first sought treatment through her regular pediatrician without success. He then referred us to a child psychiatrist. I was not overly shocked by the diagnosis because all of my research led me to the same conclusion, though I resisted sharing my suspicions with the doctor because I did not want to plant the thought and have her not look farther.
Over time an additional diagnosis was added: ADHD. I barely blinked an eye at this one. In all honesty, it had been my first suspicion. She displayed all the classic symptoms, some which are the same as the Bipolar symptoms.
Then, later, another diagnosis is added: ODD (oppositional defiant disorder). This doesn’t even seem like it would be a “real” disorder until you see it in action. “You want me to sit? Then I chose to stand. You’re okay with that? What if I stand on top of a shelf?” With my daughter if you told her, “You have to eat this chocolate ice cream.” She would refuse to touch it. (And the girl LOVES her some chocolate ice cream!)
The doctor kept adding more and more medication to the treatment plan. At one point we completely lost our little girl. As the old saying goes, “The lights were on, but nobody was home.” When, I brought her back and expressed my concern, do you know what this doctor had the nerve, the NERVE, to say? “Isn’t having her like this (like a ZOMBIE) better than her hurting herself or others?” Let me think…Um, NO!
I avoided getting snarky with her but needless to say, I went doctor hunting. We adore her doctor and therapist (we’ve been with them almost 2 years now). They always listening to what we BOTH have to say and they have my baby down to 2 medications and one supplement (this is down from 7, count them 7 medications!).
Four weeks ago, LeBella had blood drawn. There was a small incident (that is a post for another time) but she did well. She has blood drawn every 6 months to monitor the medication levels in her body and to make sure her liver is not suffering.
I do not routinely hear from the doctor following her regular blood work. When I received a phone call requesting me to come in to review the results I knew they had found something. Now the worrying would set it. Is something big or small? Is there permanent damage they missed before? By this point, in my head I’m hearing the stupid infomercial announcer in my head, “But wait! There’s more!” And I can’t help but wonder where will it end? When can we have a final and complete diagnosis so that we can concentrate on getting her stable? There is a bright, loving, darling angel inside that Bipolar Hurricane and I want her set free for good!! Is that too much for a mom to ask?
So, tomorrow we trek out to Orlando to meet the Endocrinologist who will become the next new member of LeBella’s treatment team. And, because I really am an optimists (to the point of being annoying sometimes), I’ll tell you the upside.
According to my research an unstable thyroid (a common condition in bipolar patients) can exacerbate bipolar symptoms. So, if we get her thyroid stabilized (theoretically) we may see a decrease in her mood swings and rages. So, cross your fingers for us.
**As you may have noticed I am no longer posting on the weekends (trying to balance all my projects!) However, I would like to begin featuring guest bloggers on Saturdays. At this time I am looking for mothers of special needs children to come share their stories. Your story can be heart rending, snarky, funny, educational but let us hear it! We are not alone in our Motherhood journey, though we often feel this way. By sharing our stories we can increase awareness in this little corner of the web! If you would like to be featured, or know someone who would, please email me at mommylebron@yahoo.com. I would like to get the next few weeks scheduled to see how it goes!
