New here, mother to child with bipolar disorder

Discussion in 'General Parenting' started by JRC, Dec 15, 2016.

  1. JRC

    JRC Member

    Hello All-

    I've been reading some posts and getting to know the community a little bit. I'm very glad to have found you.

    The reason I'm here is because my youngest son (age 11) was diagnosed in late January 2016 with bipolar disorder I. He had a previous diagnosis of adhd and had never shown symptoms of bipolar disorder other than low mood (I though *maybe* he could be depressed. But bipolar? We saw no mania). But that changed very quickly and he began to behave strangely at school and eventually at home we started to see some hypomania and mixed states. He was diagnosed by Dr. J B here in the Boston area.

    He eventually responded really well to medication (lamictal and risperidone) and did great all summer. Then right after Halloween everything went sideways and he experienced deep depression and rapid cycling. We decided to switch care to Dr. J W of Mass General Hospital. We felt that we needed someone with deep experience working with children with Borderline (BPD). She's added Abilify to his medicines and we're backing off the risperidone.

    Just this week we are starting to see some improvement, but basically he hasn't been in school since Halloween. Only a couple of our close friends know what's going on with him. So, basically, I don't have many people to talk to about this stuff except my husband and a couple of friends (and my therapist! I have clinical depression).

    So I'm glad to find you all!
     
  2. tandemdame

    tandemdame Active Member

    I'm so sorry you are going through this with your son, so sorry for his suffering at his young age. It must be heartbreaking to deal with.
    I don't have any advice except that you have come to the right place. I found lots of support here for our situation, and it made me feel less alone and I hope it will make you feel less alone too.
    Take care and keep posting.
     
  3. JRC

    JRC Member

    For heavens sake, I wrote borderline personality again. He's bipolar! Hopefully that's not a Freudian slip on my part. :(

    Thanks for your kind words tandemdame.
     
  4. runawaybunny

    runawaybunny Administrator Staff Member

    Welcome @JRC

    I'm so sorry you and your son are now dealing with his bipolar diagnosis, but there is hope.

    Hang in there, you are not alone.
     
  5. susiestar

    susiestar Roll With It

    hi and Welcome! I am sorry you needed to find us, but so very glad you are here!

    I think the Bipolar/Borderline Personality mixup is because maybe you abbreviated with BiPolar (BP) or BiPolar (BP). At one time in the past we used the abbreviations. Then we wanted more people to be able to find us so the system changed and now if you abbreviate with Borderline (BPD) it changes to Borderline Personality Disorder. So it is better to type out the full name of what you mean or at least maybe try a space between the letters of what you are typing.

    Please know that people with mental illness read this forum and we try to keep identifying information to a minimum. We don't use real names and we don't name hospitals or doctors generally. This is done to keep you and your family safe because this can be seen by anyone on the internet.

    I am so very sorry your son is going through this, and that you are. Because of course we go through this with them. I think even Wonder Woman would be depressed if she went through what we do! If you are using medication for your depression, I urge you to look into the dna test to see which antidepressants would be most effective. I have heard that it is very effective and can really reduce the amount of trial and error involved. When things were bad with my son I went through ten or twelve different antidepressants and only one of them ever helped much. That test would have been VERY welcome back then!

    If you have not read it, please read The Bipolar Child. I think you might find it very helpful. Other very helpful books are The Explosive Child by Ross Greene; What Your Explosive Child is Trying to Tell You by Doug Riley; and The Out of Sync Child by Kranowitz.

    I included The Out of Sync Child by Kranowitz even though you haven't mentioned any sensory issues. I think many children (and adults) have sensory issues and don't know it. Looking into sensory issues means having an Occupational Therapist (OT) evaluation and then treating it with a sensory diet and possibly brushing therapy. Treating sensory issues involves NO medication, so it would not interfere with his medications, but it could help a whole lot and give him coping skills. A sensory diet is simply different types of input for the different senses so that they have the stimulation they need to develop properly. It can help a child stay calm and engaged. My own children have significant sensory problems and used to drive teachers nuts. They would be fidgeting with things and the teacher would call on them thinking they couldn't possibly know what was going on. Then my child would repeat, verbatim, what was said in the last 2-4 minutes of class. I often went to party stores and got various little balls and party favors for my children to use as fidget items so that they could fidget quietly during class rather than rolling on the floor.

    I think this could be a part of the issues and might be something to consider.

    One thing that may be a powerful tool as you help your son is a Parent Report. This is a report that you write about your son. it is based on an outline that moms here long before I was wrote to keep all of the information from all of the various sources organized. It helps you keep everything organized and moving forward and keeps the doctors from trying to do the same things over again, because you can tell them that it was already tried and the was the result. The link in my signature will take you to the Parent Report discussion and outline.

    Whatever you do, trust your instincts. No matter who tells you what, trust your instincts above everything and everyone else. You ahve them for a reason. Teh biggest and worst mistakes I made happened because I went with what someone else said to do rather than following my instincts. He is your child and you know him best. The 'experts' and doctors spend a few minutes here and there with him. You spend hours and hours a day with him, day in and day out. You know him, they barely recognize him if they see him on the street. Follow your instincts no matter what.

    Welcome again! (((((hugs)))))
     
  6. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    My son who is now 23 was wrongly diagnosed with bipolar as a kid. There are doctors who say there is no way to diagnose young kids with bipolar. They call moody kids mood dysfunction disorder. My son spent a few years on heavy medications u til we told the psychiatrist he had no mood swings. The psychiatrist still insisted he has it.

    We doubted it so we had him tested for ten hours (intensively) with a Neuro psychologist. This is not a neurologist. It is a psychologist with extra training in the brain. They are by many in the U.S. if you love here the gold standard for diagnosing. But of course there are bad ones. in my opinion you should find one with a good reputation and reevaluate his diagnosis. They do more testing than psychiatrists.

    by the way, although it became obvious son is on the spectrum, the Psychiatrist continued to insist he was bipolar. He said "If he was autistic you would not be able to leave the room without him screaming!" I'm, wrong but that told me he knew nothing about hug her functioning autism so we fired him. My son's pediatrician weaned him off the medications.

    My son is actually on the autism spectrum and is calm withoutoodseings and medications. He is very easygoing, lives alone and works two part time jobs. Everyone loves him. The bipolar diagnosis was nonsense and he has been medication free since his autism diagnosis and is doing well

    Just be sure its really bipolar. I no longer believe there is a good way to tell if a child is going to develop bipolar or not but I'm not psychiatrist. At any rate, be proactive. Question, question, question!!! Doctors are wrong more than we want to ponder.
     
    Last edited: Dec 16, 2016
  7. JRC

    JRC Member

    Thanks for all the advice and for editing my post to remove the identifying information. Sorry! I'll check out the parent report. My sister in law uses some similar method (My brother's wife. She has a son with schizophrenia-age 21-and a son with bi polar and autism-age 10). My grandmother also was bi polar. Basically my family is f%#$d when it comes to mental health. :(

    Thank you for the book recs. I did read the BiPolar Child, but not the others. I didn't find the B P Child to be terribly helpful because J doesn't look like most bi polar kids. He doesn't have tantrums, isn't explosive and his baseline is actually pretty compliant and wants to please. That, of course, is what made us question the diagnosis. It's very clear, though, that he is bi polar. We got a 2nd and 3rd opinion (and also saw a neuropsychologist) and are now seeing--as the disease progresses--the rapid mood cycling (mania and depression), mixed states etc. We are grateful that there is medication to help him. And it does appear to be working. We're crossing our fingers that it continues for a while. It's so, so hard to watch him go through this.

    He doesn't seem to have sensory processing disorder. But that's a good point. My oldest son did (does still somewhat). And I did brushing therapy and Occupational Therapist (OT) with him. Seems like such a long time ago now (he's now 15). My oldest had pretty significant ADHD symptoms when he was younger. He's managed to really figure out ways to organize himself and stay on task both out of the classroom and in it (he doesn't take medication. We tried it and it made him very anxious). He still needs me to squeeze his hands sometimes or put a beanbag on top of him and sit on it. But he's come such a long way.

    As for my depression--I was diagnosed about 25 years ago and have been taking Zoloft very successfully--with the exception of last year for about 6 months. My doctor thinks it might have been peri-menopause interrupting my sleep and then the added situational issues with my youngest son. My nephew (autistic and bipolar) had the DNA test done with great success. They did the testing because they gave him an SSRI for depression and he went absolutely bonkers. No surprise because he's bi polar (this was before his diagnosis), but they were able to see what medications were in the "red zone" and what were "green zone."

    The hardest part for me has been the isolation. As I said before, only a few people know about his diagnosis. None of his friend's parents do with the exception of his best friend's mom who is also my very good friend (she has 4 boys. 2 with ADHD. She gets it). I just don't now how to talk to people about this. I don't want to stigmatize him. I feel like it's no one's business. And when the medications are working he's *fine*. No one would know that he has this serious mental illness. But that also means that *I* don't get to talk to people about what we're going through here. I don't want to talk to my friends who's kids are in my son's class. I know they would be supportive but I don't want to put his story out there because I don't want all of his friends to know right before they all go off to middle school. What have all of you done with disclosing to people? I really struggle with it.
     
  8. Wiped Out

    Wiped Out Well-Known Member Staff Member

    Welcome JRC! I'm sorry you are dealing with this. My son is also bipolar. He was diagnosed at age 7 and it was definitely the right diagnosis for him. We went through 6 hospitalizations and many medication trials. There really is hope. My son is now 19 and on the right medications (has been since he was 14) and doing really well. He is still difficult, no doubt about it but he is working, has friends, and is doing so well compared from where he started!
     
  9. kim75062

    kim75062 Member

    Welcome!

    If your looking for a place to vent about the struggles of daily life you have come to a great place! We all have our ups and down and even sideways with our kids. Its nice to come to a place where people actually "get" whats going on and what its like to deal with these kids on a daily basis.

    My best advice to you would be to stop trying to hide or avoid talking about your sons illness and problems.

    Mental illnesses are still not very well understood by most typical people but they don't carry the same stigma that they did 20 years ago. We no longer lock up kids with downs or autism in institutions because their not "normal". We don't give up on kids with Learning Disability (LD) and label them unteachable (most of the time anyway, but that's a whole different thread). Almost any person you talk to could tell you what depression is and probably name a few medications for it just from the TV commercials. Its not a big secret that needs to be kept and nothing to be ashamed of.

    The kids in his class probably have already made up their own version of why they think hes not in school, and I'm sure its much different then the truth (kids come up with some crazy stuff when left to their own imaginations).

    I wouldn't go on Facebook or twitter and post/tweet every single problem your son is having for the world to read but I wouldn't hide it either. But If someone asks me I tell them whats "wrong" with my son. I usually go with hes has a "chemical imbalance in his brain and has developed neurologically different then typical children". That seems to be a good catch all that covers most mental illness in kids that parents of typical children will understand. I think his friends parents and friends should be made aware that he has a mental illness, not necessarily which one or lots of details, treatments etc. but if hes out with friends or over visiting and a manic episode happens they need to be prepared for what to do. They also need to be aware that its not his fault and he really cant help it. an illness is an illness whether mental or physical its only fair to give the other people around a heads up.

    I had a kid stay for a birthday party at a skating rink once that had a seizure disorder I was never told about. Needless to say the disco ball was a BAD idea and she ended up with 3 stitches in her chin. Thanks to the parents not telling me anything I was completely unprepared to prevent it or to deal with it. Had I know in advance, there would of been no disco ball, laser lights and she would of had an adult in the rink with her at all times.

    I know it may be embarrassing or even scary to talk about it but most parents and kids understand and are compassionate. And the ones that aren't are probably not going to be a good influence on your son in the future anyway. Your son needs you to model to the rest of the world that hes not "typical" and that its OK. His big brother seems to have adjusted and overcome a lot and is a great example of what happens when parents do all they can do to help their kids with these problems.

    My son just turned 6 and we still don't really know whats going on with him. I will not be surprised if a BiPolar (BP) diagnosis is given in the future. But he still knows that his brain is different then most kids his age and he has to try harder to do things that are easy for other kids. He will tell you that "his microscopic wiring is jumbled up in his head and the doctors are trying to untangle it" (he understands how the nervous system works well).

    And if you choose to not talk to anybody in person about it because you still just can't etc. we will all be here with open ears (eyes actually )! I know I will anyway because I no other grownups around besides all these great wonderful people Ive never meet to talk to lol
     
  10. susiestar

    susiestar Roll With It

    This CAN be hard to talk about. I was unusually open about my son's problems because I didn't see them as us doing anything wrong. He couldn't help his problems any more than he could help being left handed or having curly hair. There was one family I told more in depth than most others because our daughters were close friends and because I was actually close with the grandmother of my daughter;s friend. I knew her years before I met my daughter's friend, I worked for her. My daughter and her grand have the same birthday and were besties for years. We lived a few blocks apart and when things got bad, my daughter would go to their house. In second grade they actually gave my daughter a house key and told her to just come over and if they were not home, to come in and make herself comfortable. And she did. I knew where she was going (four blocks, very safe walk, knew everyone who lived in between), and was okay with it. I told them the whole story at first because it wasn't safe to have other kids over for sleep overs because our son got violent. He was worse around girls and I couldn't take that risk with other people's children. My daughter most often spent the night at this one house and I felt I needed to explain why I was not asking their daughter to come spend the night at our home. It wasn't that I didn't want to, or that I disliked their daughter, it was that I didn't want to endanger her. So I told them the entire story. THey were so sweet about it.

    Another place you can go to find support is NAMI, the National Association for the Mentally Ill. They have support groups for family members of those with Depression and Bipolar. I know they meet weekly in my small town, so they likely meet in many towns across the US.

    I am sorry that you have so many problems in yoru family, but it sounds like you at least know what you are dealing with. I hope the books give you some ideas to help you cope. As with any advice, take whatever helps, and ignore what doesn't. Follow your instincts because they are your best guide through this confusing maze. Often they are your ONLY guide, your only reliable guide anyway.
     
  11. JRC

    JRC Member

    Thank you all so much. It really helps to be able to come here and talk about all of this. I did open up to two friends this week after reading some of your responses. I felt both relief AND anxiety afterward. I guess that would be a normal response. ;) Thank you all again.