doctors won't commit to a diagnosis
Hi,
I haven't posted here before but I've read many of the posts. My son is 10 years old. He has Asperger's and Bipolar. He currently takes risperdal and depakote. He was hospitalized for two weeks this fall and complete a 6 week partial program (3 hours 3 nights a week.)
His doctors dx him as bipolar but they refuse to actually ever say it out load. they write it on insurance forms and tell me its the working diagnosis but that they can't be positive that he really has it or what the long term prognosis will be.
They can't understand why this is so difficult for me. They show so much ambiguity around the diagnosis.
He's been "psychotic" although that's a difficult thing to determine as well. He gets paranoid. He thought at one point that the street lights outside our house had robots in them that were recording his thoughts; he thought at one point I was trying to poison him;he sees things that aren't there; he's heard mumbling and his voice being called when no one was speaking. He's extremely irritable. He has periods where he is frenetic and hyper and impulsive. hypersexual. and periods where he sinks into dark depressions. Before he started on the depakote he was sobbing and told me he lives in "such a dark place."
So I don't understand the ambiguity. And I don't know why his team (m.d. , therapist, and family therapist all at a large academic children's hospital) doesn't think it would be important to a family to have a firm diagnosis. It's so frustrating.
I have severe depression (possibly TypeII bipolar.) My brother, father, and aunt are all bipolar. The "team" often intimates that they think Ben's ups and downs are a reflection of what's happening at home. We have a really stable supportive family but when ben is doing poorly myself ,my husband , and our daughter all start doing poorly because of the stress from our son. The doctors seem to think that its the opposite. That if there is some stress in the family then Ben does poorly ( because we all tank together.)
Also, when Ben went into the hospital he was on 4mg a day of abilify, 12 mg a day of abilify, and 1mg day of klonopin. he weighs 70lbs. in the hospital they said he was dependent on klonopin and had to be weaned off. his "team" dr put him on the combo of risperdal & abilify because they are fda aprroved for bipolar in kids but i've never seen that combo used by other kids. when he went in the partial program the dr therer (at a different hopsital) put him on depakote and he's now the best i've ever seen him. (that dr only see's kids when they are in a hosptial program.)
i just don't undersdtand why the "team" won't just call it bipolar-they refuse to say it out load -they say mentally ill... its so frustrating to me.
--
Jen
I understand your frustration with the diagnosis and it is legitimate. There are a few reasons I think Doctors do this. Some make sense and some don't. For instance - some are afraid to 'label' children out of fear that this will put them on a pre-determined path through life. This is one of the reasons I think does not make sense (but there are a lot of people who do not agree with me). On the other hand, some think that a child as young as yours (and mine) have not yet gone through the full assault of changing body chemistry brought on by the hormonal changes of puberty. As their body changes with the hormones, so will their brain chemistry. Which means that what they see now may not be what your son looks like when the process if over (in about 12 years *sigh*). This makes much more sense to me. It keeps them (and you) open minded about reporting symptoms and exploring treatment options so that as the illness progresses they get a better understanding of what is really going on. I know this doesn't make it easier for you but it has helped me to thing of the entire situation during the teen years as a process rather than something that is black and white. If they are treating his bipolar like symptoms effectively then how it ends up doesn't matter much and it doesn't matter what they call it.
Good luck and hang in there. Its going to be a long ride.
--
Karenj
Self: as sane as I can be everyday
A - DD (17yo) well adjusted, high functioning, motivated, successful, waiting patiently to go away to college
M - DD (13yo) Bipolar I (dx 4/2011) ADHD (dx 2nd grade), dumb high IQ, mainstream education with IEP/BIP, Seroquel XR 400mg - morning: Seroquel 50mg evening; Lamictal 150mg - morning
BF - Live in boyfriend of 5 years, supportive and learning more every day
EX - Ex-husband, divorced since 2002, family history of bipolar, unpredictable and sometimes explosive
Jen,
Well the good thing is, your ds is doing well on Depakote and Abilfy and Risperdal. Hopefully his Depakote level is stable, and if his psychosis is resolved, you may be able at some point to reduce the AP dosage a little. I suspect there really isn't any doubt in the pdocs' minds about him having BP, but it is also true that the presentation of his illness will likely change in his later teens. My ds17 was also psychotic and extremely mood labile at that age up until almost 14. Then his brain settled down and we found the right combo of meds, and you would never guess how ill he was a few years ago if you met him now. I honestly feared he wouldn't survive to 18, and now we are planning for college.
Hang in there, continue to seek the best treatment for his sx. It doesn't really matter so much what they call it as long as he is getting the treatment he needs. Have you seen the Expert Treatment Guidelines? These are helpful for knowing which drugs are used for what.
--
Brenda,51, TBMF Parent to Parent Volunteer
Mom to A, 17, BP, Tourette's, OCD, ADHD: Eskalith CR, Lamictal, Cytomel, Allegra
E, 15 1/2, BP,AS: Seroquel, Eskalith CR, inositol, Buspar
B, 14 & H, 11
Married 18 years to DH, 50
FROM TBMF: Do not start, stop, or change medications or other treatments for yourself or your child based on what you read on this Website or elsewhere on the Internet. Information presented here should not replace the considered judgement of a doctor who knows you or your child.
These psychiatric diagnoses are labels for symptoms observed over time. They are fluid, unlike the type of clear-cut medical diagnoses which can be determined with a test. They are more like labelling symptoms of "fibromyalgia" which essentially is labelling the symptoms... then finding down the road that it was actually Sjorgren's. The problem with a fixed label (diagnosis) is it may preclude them looking further.
My younger daughter was labelled "Bipolar Disorder" and then after that, "Psychotic Disorder" then after that "Schizoaffective" and then after that, according to her psychiatrist, in a couple months she won't have that label either (long story). And BEFORE her "bipolar disorder" diagnosis, her diagnosis was "mood disorder-nos" and before that, "Major Depressive Disorder." All based on symptoms over time.
Another girl I know had "Bipolar" then "Schizoaffective" and is now back to "bipolar". Yet another woman I know with "Bipolar" changed to "Schizoaffective" decades later, and now in menopause, they say she has "Schizophrenia."
You may be interested in this: ICD-10 vs DSM-V
--Jeanie aka "Naomi"
It's Not Mental
Older dd: formerly(?) teen-onset bipolar (morphed into ultradian cycling): "Recovered" after over 13 years - stable off psych meds almost two years. Now fine on just diet changes and higher thyroid levels (after healing - addressing gut issues/Candidal overgrowth while using EMPowerPlus and other supplements). She added a little EMpowerPlus back on as a multivitamin simply because she feels better on it - gets sick less often.
Younger dd: formerly(?) Childhood-onset schizoaffective, TS, OCD, anxiety, PTSD, migraines. After over 15 years, is now "recovered" for almost 5 years after treating endocrine issues, food sensitivities, gut issues, sleep issues, nutritional/mitochondrial needs.