A Mother’s Plea – Pediatric Bipolar Disorder

Living_Brain_Disorder2.jpgI am a mother of a biological son (grown 33 years old) and adopted boy/girl twins (10 years old). I am an R.N. of 30 years still working full time and exhausted human being. My dilemma is as follows:

My adopted 10 year old son has most recently been diagnosed with pediatric bipolar disorder. This of course is after 10 years of a page long full diagnoses on this child. He has been on more medications than a CAD/COPD Renal patient!! I get conflicting statement after statement, article after article and I am exhausted! Have I done worse to this child by trying to believe all the “expert” advice to the point that it is tearing our family unit apart. It is mind boggling that SO MANY diagnoses are intertwined with so many others. No one can seem to draw lines in the sand. I know we call it “practicing medicine” but what if all that practicing causes a young life to go amuck? Currently he is having much trouble in school following directions, staying on task, easily distracted, very smart, sweet soul, exacerbating behavior vs. family/teachers exhausted from diligently working with him to complete tasks from the simple of brushing teeth, reminding him of body cues, ie need to urinate vs. dehydration.. go get something to drink vs. matching colors correctly. He is 10 years old going on 11. He doesn’t act or “feel” like a 10 year old, he is more like a 3 year old in care.

Fact: He was born to a teenage mother (3rd pregnancy, 17 yrs. old at birth) who tested positive for methamphetamines/alcohol/smoking. Term infant, ROM greater than 30 hrs. He was Twin B, respiratory difficulties, NICU x 24 hrs. antibiotic therapy, rallied well placed into temporary foster care along with his twin sister (no complications with her). In and out of foster care first 1 year of life, parents rights terminated. They have been in my heart and life since 1 year of age. Came to me with “attachment disorder, anxiety disorder, ongoing ear infections, staph infection on skin from scratching of lice and fleas in the first year of life. Lived in a “crack house” with a diagnosed narcissistic grandmother, teen mother and unknown adults for first year of life. Adults did not meet male childs needs consistently, nurtured twin girl though. These are the beginning facts:

They both had PE tubes at age 3 after I adopted them and they were taken out of “the system” and placed on my insurance after repeated ear infections. Bottle drinking was discontinued at appx. 16 mo. a very strong self soothing habit on their part. We just did water for months just to self calm them. They were very leary of strangers, especially my boy twin. I have video of him falling to the ground at 15 mo. of age when the DCF driver came to the house to take them to weekly supervised visits with biological parents. I took him to occupational specialists, I did “brushing techniques, proprioceptive exercises, balance theory, audio theory, drug therapy started around 4-5 yrs of age. We have experienced sleep deprivation to audio vs. visual hallucinations vs. emotional meltdowns vs. rage to being able to hug us as parents finally. A total gambut of emotional, physical, mental stress that is totally incomprehensible by most. There has been few normal peaceful days in our lives in the past 10 years. I love my children with all my heart and soul and at this point I am no more encouraged over what is going on physically vs. mentally with my young son.

Fact: He has some kind of “odd temporal lobe misfiring noted time” and again on EEG’s from the age of 6 1/2 to today. My psychiatrist is wondering with the neurologist along with the pediatrician if we have him on the correct recourse of drugs, presently Risperdal and Lamictal. I on the other hand would like to run down the road screaming at this point as they don’t always remember his correct name after treating him for a year and a half. My gut feelings are telling me to taper off everything and try absolutely nothing.

Would 4 months be long enough to detoxify his system of all the drugs?? What about the rebound effects??? What if it’s something as simple as a “milk allergy”?? He loves milk. Insurance groups don’t do testing anymore for allergies. Everyone is just into prescribing drugs. Okay all you physicians, mothers, fathers, grandmothers, grandfathers…..take this to the blog.

Dr. Seus, “What would you do?” Thank you for listening, thank you for your time, thank you for letting me ventilate.

Ryan’s Mom

  • As a parent of a child who was initially diagnosed as ADD, then ADD with Asperger’s, and finally with BiPolar and Aspergers, I feel your confusion and the pain associated with guilt over possibly making the wrong decision. However, I am also BiPolar and Asperger’s.
    As a youth, I had none of those se-backs, but did suffer outward signs similar to my child and yours. However, I never really suspected these to be something abnormally different, and some of the mania symptoms of OCD and excesive organization helped.
    I have also noticed that, with a good P-Doc and working up to the dose, can help a person “take the edge off the fire” and utilize skills that can be learned.
    I also invite you to visit http://bipolarfeelings.blogspot.com/ to view postings on the internal chaos and feelings of BiPolar disorder.

  • Christine

    Hi Ryan’s Mom:

    I know how exhausted you are. I have a 6 yr old son who was just officially diagnosed by a therapist a bipolar, even tho I diagnosed him myself last year after doing much research on the web and at the bookstore. It does sound like your son has juvenile bipolar disorder and maybe a few other issues like anxiety that are totally genetic (there is high comorbidity between bipolar disorder and other problems like ADD, ADHD, OCD, etc. It sounds like his early life may have made his problems worse (and even introduced a few new problems). So, thank God you came into his life. Whenever I start to feel down about having a bipolar child, I try to think positively that at least we have identified the problem and we can help my son learn good coping skills to help him navigate the rocky, stressful shoals of his adult world, and that will increase the chances of him having a decent life.

    I highly recommend this website of the The Juvenile Bipolar Research Foundation to everyone who suspects that their child may be bipolar: http://www.bpchildresearch.org/. The JBRF is the first charitable organization solely dedicated to the support of research for the study of early-onset bipolar disorder. The website provides the latest research on juvenile BPD and even has an online questionnaire that can tell you if your child definitely has juvenile bipolar disorder. Not only is it critical to get an accurate diagnosis, but it is critical to get ALL the comorbid disorders diagnosed accurately because, as you have probably been experiencing, medications that treat some problems can make the bipolar disorder symptoms worse.

    Also buy the book that Demitri F. and Janice Papolos wrote the called “The Bipolar Child.” Actually, buy a few copies so you can give a copy of it, along with a copy of the filled out questionnaire, to your son’s therapists and doctors who haven’t read it. Evidently, it is a groundbreaking book because many therapists don’t even know that the symptoms of BPD in children are different than those of adults, and that there is such a huge overlap of other disorders.

    Good luck with everything.


  • Thanks Mike and Chris for your comments. I have been on both the sites that you all suggest. I also have the book, Chris! I do agree with you on all the comorbid disorders as well. He also has a spina bifida occult which although most have dismissed joins the rest in his problems, bless him. We muddle through daily.
    I think most of my problem has been the insurance game as well as the health care system. I can’t seem to get anyone to look at him wholistic, if that makes any sense. The neurologist is not one of the insurance’s providers vs. psychiatrist and pediatrician. As soon as we get on top of the BiPolar symptoms, the meds do a number on motor movement, ie. tics etc., they take him off a med that helps only to put us back to square one……………sigh.
    A part of the life of the disease, I know. I try to dwell on so much of the positive. As you all know, some days, even weeks, you drown in the “coulda, woulda, shoulda’s”. Today is a good day, so far…it’s only 6:30 a.m. 🙂 !!
    Thank you again for your comments.
    My best to you all in your struggle as well.
    Sincerely, Ryan’s Mom
    P.S. The school district promises a 504 educational plan this year, hooray!

  • Christine

    Just wanted to post a few thoughts about the co-morbid symptoms. Another mom in my neighborhood who is a nurse and who has a child with Asbergers/ADHD/anxiety were talking about the kids in our we know who have disorders that doctors and parents are having a hard time trying to identify. It is hard. We agreed that even when you do identify all the comorbid disorders it seems that you can only successfully treat one of them at a time or else the medication will worsen the symptoms of the other disorders. To which we all just collectively sigh and lay our head down on the table and cry a little.

    But the good news is that therapy does do wonders. In fact, I would say that medication should never be given without therapy. I asked a bipolar teen who struggled with depression most of his life (including suicide attempts) and now is amazingly well what he thought was the most important thing that helped him. Without hesitating, he said that the drugs did help but it was the therapy that had the most impact.

    The other thing that my neighbor nurse and I have observed is that some of our kids who have been diagnosed as bipolar/ADHD/OCD/etc. and who have been difficult to treat actually have some comorbid and undiagnosed autism/Asbergers. These are the kids who seem to have a hard time at school and in social setting because they can’t understand the social dynamics enough to try to hide their disorder (most bipolar kids can “hold it together” until they get home and then unleash all their emotions and problems). And autism makes therapy a little harder, but even more important.

  • Max

    I totally agree with you

  • Pingback: Bipolar Memory Loss | Is Bipolar Hereditary()

Shaheen E Lakhan, MD, PhD, MEd, MS, FAAN

Shaheen E Lakhan, MD, PhD, MEd, MS, FAAN, is a board-certified neurologist and pain specialist, medical educator, and scientist. He is the executive director of the Global Neuroscience Initiative Foundation (GNIF). He is a published scholar in biomarkers, biotechnology, education technology, and neurology. He serves on the editorial board of several scholarly publications and has been honored by the U.S. President and Congress.

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