Hope asked me in a previous thread if as a parent, was there anything I was able to do to expedite the recovery process of my son. Even though I answered no at the time, she really got me thinking. My son was about 9 years old when I started seeing signs that something was wrong, but it wasn't until he was 17 that I first heard about bipolar disorder...he is 19 now and I would say he is fully recovered.
So, I started thinking what was the catalyst for this 2 year turn around when for 8 years previously we floundered and suffered immensely not knowing what it was or what to do. I would have to say that the answer is "charting". I created a detailed excel spreadsheet with events, incidents, dreams, etc., etc. that happened right before a bipolar incident (maniac or depressive). In the beginning it was confusing since I didn't know where I was going with it, but with time patterns started to develop and I could see what were the major triggers or what medication was working or not. Or how his eating habits or food intake were influencing...so to answer Hope, yes, you can expedite the process with careful observation and detailed charting and adjust your lifestyle, medication, etc., etc. based on your findings.
That's an excellent idea, Rose. It's a step beyond the typical mood charts, but it really measures every influence and I like that. I do think the key to understanding and managing this disorder is predictive knowledge and this sounds like a good solution.
If I may ask, what categories did you use on the spreadsheet and what time increments did you use?
Increments: Minimum daily and sometimes several times a day if he was going through a rapid cycling, but I can tell you that I kept track every single day, even when things were ok to see why they were ok, and what made it into a good day. This is how I broke the medication into morning and night; the doctor had told me to give him 400 mg. in the morning but as I started spreading them out into 2 separate dosages, I started seeing better results. Additionally the doctor increased to 600 mg when he went though a crisis but after the crisis passed, I realized that he was getting emotionally numb, he did not smile, it was like he was lifeless. At that point I brought down the medication to 200 mg. in the morning and 200 mg. before he went to sleep...and voila...he was back again.
Categories: Medication/dosage/schedule; talk therapy; behavior and emotions; food and eating schedules; exercise; illicit drugs; friends; sleep/dreams and vitamins.
Yep, those are the 8 "wasted" years I spoke about in my previous postings. As a matter of fact a couple of them made the illness worse, not better...until I finally found out he was bipolar AND what bipolar disorder was.
It took 8 years and wrong diagnosis after wrong diagnosis...when you read the postings, doesn't it make you wonder how many people are suffering simply because they are taking the wrong medication or have the wrong diagnosis?
It's so true. And when you finally find the right pdoc, the right tdoc, and the right meds, how wonderful it can be. We, too, went through therapist after therapist (my son has had 8) and if I ever have the time, I would love to become an advocate for mental health professionals having more accountability. I have never seen a profession where people can actually do damage and then simply walk away. It is horrifying!
That makes two of us but in my case I would like to concentrate on the school system because they are so ill prepared for these type of children that they end up devastating families and the actual children. So many of these kids are treated as "trouble makers" or "bad kids" and so many other horrendous labels...the school's solution?..."send them to schools for troubled kids" because their performance lowers our school rating. The sad thing is that so many of these schools for troubled kids are meant for kids with behavior problems not mental illness, causing havoc in kids like ours.
Our kids spend hours at the school, there has to be some kind of infrastructure where these behaviors can be detected early and take corrective action. I remember going to my son's school DAILY!!!...I promise!!! every teacher, every counselor, every school assistant had seen me there day after day, year after year crying my heart out...do you think one, just one brought to my attention that this could be a medical issue and there were things such as ESE programs that could have helped me early on, when the illness initially starting showing up its ugly face? They deal with thousands of kids!...all I ever heard was that my son was a "troubled" kid, a "bad" kid...until one day I saw a 60 Minutes or maybe Dateline program showing a kid in Utah who was bipolar and was put into one of these programs...it wasn't until then that I realize that the school actually had programs that could have helped me years earlier...I keep wondering what happens to those kids whose parents are not as involved as I am? What becomes of them? It just brakes my heart thinking about it.
If I could chime in here I believe that Equatro is a generic brand of Tegretol slow release!! It is an anticonvulsant with moodstabilizing effects as well.
Thanks Rose for the suggestions on charting. It is amazing that your son is doing so well on one med. I will keep this one tucked in my back pocket in case we need something if the one's Erin is on stop working. It is my hopes that we can eventually get Erin to take only the Lamictal....we just got to stabilization so I don't want to go doing anything at this point in time but when she gets through the worst hormonal phases of adolescence I may see what the pdoc thinks about taking her off the Seroquel.
Meanwhile....I sooo appreciate having another mom slightly ahead on the road. Yes, we wasted 7 months on antidepressants and ADD meds that only increased Erin's hypomania and suicidal attempts. I thank God that it wasn't any longer than that for us to get to the right diagnosis and find the right meds. I would imagine that alot of kids are going down the road of misdiagnosis and poor management of their symptoms being categorized as "troubled teens" and ending up incarcerated in in juvenile halls and even worse victims of suicide. I think that it is time that the schools start educating parents and teens starting at middle school level of the signs of symptoms of BP and how very important it is to be treated for it early. I have read that many kids lose 8-10 years of their lives sometimes even more to this disorder when if it had been treated in the first place that would have been cut by 90%.
Thanks again Rose....it is great to have found you and I think that it is great that you have come to this forum to give BPers as well as families of BPers hope that things can truly get better and how important it is to fight to find the right meds that will turn your entire life around.
God bless you for sharing such hope with us ~ Goody
I found the actual Equetro site [url]http://www.equetro.com/[/url] ...for what I understand it is the first FDA bipolar disorder approved medication, it was initially used for people with with epilepsy. It is a carbamazepine extended-release capsule
Additionally I am not sure if this has helped or not but he eats lost of Omega 3 based food (fish, etc.) AND takes 1200 mg Omega-3 vitamins daily. No fast foods AT ALL, salads and vegetables and home cooked meals daily,nothing canned or processed.
Thanks , so its like tegretol and topamax which my son is on. Remember, my son does not have a definite bipolar diagnosis. topamax was initially prescribed for seizures that he had while he was using drugs. it was prescribed by his neuro. since he is almost 5 mths drug free and had negative mri's mra's eeg's and cat scans his neuro doc told him FROM HIS POINT he can wean off the topamax. In other words its now his pdocs and tdocs call whether or not to stay on it. My son has done wonderful on this drug, could it be that its coinincidental because hes drug free now? I dont know. After discussing this with my son he prefers to stay on it. he knows it helps his mood swings alot and hes afraid to have another seizure. keep in mind hes far from perfect but has improved tremendously. Again, im always afraid to say good things because you never know...
I don't know if you can even appreciate how far your son has come, but the fact that he has meds he likes and is willing to take, a pdoc and tdoc he likes, has been drug-free for 5 months, has a new job and, in general, has been doing so, so well is a testament to your love and commitment to him.
I remember when I first read your posts, you (like most of us) were so desperate to figure out what to do for him. But you and your husband made some tough decisions, your son made some tough decisions, and together you have saved his life and given him a new one to look forward to.
Even though some days are still hard and the future still uncertain in terms of his career, I celebrate with you and your family his success!
Thank you so much hope, again its all baby steps so i didnt see it happen overnight. I dont want anyone to think hes perfect, he has alot of issues with different things..but alot of the fingerbiting, cheek biting, all that anxiety stuff has calmed down alot..he even gave up the chewing tobaccco.
We do love him after all hes our only boy, you know what thats like ..Zac too ahs made a huge improvement.. all summer as im reading your posts im saying to myself that school is a huge contributing factor to his problem...dont you think? look how well he is doing all summer. I dont believe in coincidence.