Sometimes The Battle is Harder than You Ever Dreamed #bipolar #mooddisorder #parents

My son has a mood disorder, I can honestly say Bipolar but the clinical diagnosis is one of two things; his counselor says “Mood Disorder – NOS” meaning he has a mood disorder not otherwise specified, his new psychiatrist is trying to diagnose him with “Disruptive Mood Dysregulation Disorder”. Either way, he clearly has a mood thing going on and since bipolar is what runs heavily in the gene pool as well as what I grew up watching my younger sister (and only sibling) have; I will tell you he is by far bipolar. At age 7 and even younger though, they won’t diagnose such a mood disorder because he is so young. On average it seems bipolar doesn’t get diagnosed until closer to age 12, that’s just based on my own personal research.

Based on working with a counselor then a psychiatrist and now back to dealing with both, it’s clear my son has an issue with moods; they switch off and on like a light switch when not properly medicated, he’s easily irritated, he has some sensory sensitivities, he also has irritability and other symptoms that put altogether make it difficult for me to parent him as his primary caregiver and him lead a normal seven year old boy life. Don’t get me wrong ,he’s a fighter and since he also has anxiety, he is able to play sports, do well in school and function in society. The thing is that when his medication is off, his anxiety comes out more, he is more easily provoked, he melts down more and his routine driven and very serious can’t take “sayings” as just saying’s personality comes into play more. It’s difficult because we all use metaphors in our world but Aj can’t really deal with metaphors, when it comes to Aj, what you say is what you mean and what you get is what you get. There is no grey area, it’s black or white only.

When Aj is really having issues with medications or things are going a bit off kilter, I usually text my friend Dwan, because she is the one person who has been in my life for many moons and knows all too well most of what I’m dealing with. Dwan is who can easily help me in some ways when it comes to Aj because maybe she has tried something I haven’t with her own child or maybe she has learned something from a professional that I haven’t yet. It’s all about my online community of friends and I have a pretty good mix of them that can assist when times like yesterday happen.

Recently the psychiatrist added Prozac to Aj’s abilify treatment for medication. This was meant to help with his anxiety that he still sort of has in school situations, but his anxiety wasn’t anything major, he is just a bit more reluctant to act out aggressively in school because it’s not his “comfort zone”. At home, Aj is who he truly is and honestly isn’t that normal for most people? So we went along with the Prozac idea because, well we didn’t know what other option to try at this point because the abilify wasn’t working the way it should. I will be honest, I am insanely angry about putting him on Prozac. His moods are worse, he is more irritable and he is not happy at all.

Yesterday …. he had a dentist appointment so I took him there and we had a decent morning, he had a mini meltdown of anxiety when he had to go alone (which is the norm) back with the hygenist to get ready for his silver cap to be placed on his molar. I was able to be strong and be brave for him and encouraged him to go with the lady and he did so with a bit of tears in his eyes, but he did it. Then on our way home he decided he was angrily hungry, like OMG the world is going to fall apart if he didn’t eat right in that moment. We were in the middle of a city I am not going to drive around in to find food. I had to have him wait, he had eaten a great breakfast and snack earlier, he was fine. I also had a drink in car for him so he could drink that while he waited for me to happen upon a food place closer to home.

Then it happened, we got to the school to wait to pick up his brother and it was rainy outside. Aj decided he could no longer wait in the van, he had to get out. I told him that he could get out of the van if he wanted to, I could see him from where I sat in my van and I had an umbrella he could use. The next thing that happened took me by complete shock; my son jumped from his back seat and wrapped both arms around me, had me pinned to my driver seat in a fit of rage/anger and I could barely get his arms off of me. (yes I was parked with van off at this time, he didn’t do this while vehicle running) I nearly broke. The thing is when parenting a child with a mood disorder you have to be the stronger one, the smarter one, the patient one and when I say these words, you have to be those things both mentally and physically. Which is why I need to start working out again, my seven year old is and has always been one BUFF boy. He is starting to get stronger than me.

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Hoping for Breath of Fresh Air with my Son #mooddisorder #bipolar #therapy

The one person who has seen Aj from the “beginning” so to speak has been this counselor that I am going to see today. What I am hoping to gain from today’s meeting?

  • A new insight to what’s been going on with Aj for the past five weeks.
  • Assistance in getting the new pysch to listen or possibly find a referral to a new pediatric psychiatrist for our son.
  • Advice on whether he truly feels the meds his pysch put him on would be beneficial.

You see, Aj has now capped on his anti psychotic medication which means he can not go higher and the dose he is on isn’t really helping anything as a whole. If you ask me, he is better than he was without any medication but he isn’t 100% at this time. It seems this boy who often metabolizes medicine quicker than your average child is no longer having much benefit from his Abilify. The new pych has also placed him on medication for his anxiety but the full effects of that won’t be seen for 2-4 weeks and we just finished week 1 of him being on that.

The mood swings, the highs and the lows, the overly loving, the insane OCD and all of that is now back and it’s so difficult to work with. Aj is exhibiting his signs of the autism spectrum that used to shine through when his medication was wrong or when he was on no medication at all and it’s so difficult to parent this child. For instance; Aj doesn’t take social ques and he isn’t good with sarcasm. What you say – you mean. Aj is a very literal boy and if you say “in a few minutes”, when his medication isn’t working, he will stare at that clock for THREE minutes and expect you to drop everything right there because you said “in a few minutes”. That’s just one small example, but the list goes on and it’s so difficult.

Imagine raising a child who never fully “gets” empathy or sarcasm? For me, I am a sarcastic fool but not always as a parent just as a person and when we are playing around in the house I may act goofy and be a little sarcastic in a fun way while playing with the children; you cannot do this to Aj for it will send him into complete melt down mode. Surprises? Forget it, Aj hates surprises so bad he will have a major mood swing meltdown of anger over not knowing what the surprise is – he HATES them. My other two kids LOVE suprises.

I just feel, as of late, that we are going backwards. The pysch says “well I haven’t seen the symptomes of child bipolar in Aj”, and I reply that of course she doesn’t, only his counselor has and a select few people who knew him before medication have seen that. He has been on anti psychotics for over a year now if not two years and that is basically why you are no longer seeing the hallucinations and other symptoms of child bipolar – his meds are working “kind of” but not “fully”. You see, his abilify keeps some symptoms at bay but he really isn’t fully benefiting from the dose he is on. The problem is that based on prior conversations the only other two medications for anti psychotics he can take will have him increase weight again, something he finally is working off from the risperidone side effects. He gained over 30 lbs in a short period of time when he was on Risperidone. I can’t put him in that position again.

It’s such a difficult time and I am fighting to stay strong, it’s getting harder and harder each day with his mood swings, but I once fought for this child without him being on any medication so if he is sort of being helped a tiny bit with medication, that means it’s no where near as bad as it could be. That is what I try to remind myself as I  continue moving forward and fighting for my son – that’s my job!

Remember – mood disorders are not a choice, it’s something a person lives with, struggles with and has no control over. Sometimes as people get older they can have better control and coping skills, but sometimes medication is needed to keep that chemical balance going on in the brain. A chemical imbalance is not a choice, it’s something no one has control over. That is really what my seven year old has dealt with since the day he was born and it’s his Dad and Me who will continue to fight the battle to ensure Aj has a chance to be steady in life.

With Thanksgiving and Christmas coming, and watching as Aj’s medication being off is affecting my other two children a lot, I really just hope we can get a solution so that the holidays will be special for us all.

Siblings: Dealing with a Child who is Different

The DaughterI tend to not like the word different or normal as it pertains to children or even people for that matter. After all, each of us is unique but I am having difficulty coming to form another word that makes sense right now. All I can say is that my middle child is different than my other two children; sure my oldest and youngest are different from each other as well, but not as much as my middle is to them. My middle child has the biggest heart, just like his siblings he loves with all his might. Unlike his siblings, it takes more time to earn and keep that love and trust. My middle child is sometimes guarded, anxious and unable to trust right away. My middle child has a huge bond with me, which is why when last week he had a bloody nose at school and I had to bring a shirt to school, the school nurse brought it to him. The school nurse and I both knew if I brought that shirt to him, he would have an issue. The anxiety he has would kick in because a familiar “safe” person would be there and his anxiety would flood over the fact that he had a bloody nose at school. When I am not visible, he fights better, harder and knows he doesn’t have a choice other than to do that. Essentially his anxiety helps him stay bottled up at school, so his moods don’t show when at school.

What I am having an issue with at this time is that my middle child’s medication dose seems to be off a little bit, sadly with a growing boy, his medication doses need to change often. Combine the fact that this child, Aj, has always been the type to have a high tolerance for medication, meaning his body metabolizes it quicker than most people. So when Aj’s medication is off, his moods are off, when his moods are off, everything is off. It’s a domino effect. When you have a child who has a mood disorder or something “different” going on, it plays a toll on that child and the family as a whole. Since we are a very close knit family, it plays a hard toll on us deeper than those who are not as close knit.

IMG_1128My oldest understands Aj has a mood disorder, she has lived this much longer than her little five year old brother. My daughter knows when Aj is off what to expect and how to keep away to ensure she isn’t hurt. While my daughter still tends to instigate her brother, which baffles me, because when his manic moods come into play – he won’t think twice before reacting. He has close to no control and sometimes he has no control. He has a chemical imbalance in his brain, it’s not something one can control except with proper medication and therapy. I don’t have to explain to my daughter what is going on with Aj when he is off, she just knows. This is a child who, before Aj was medicated, was found on occasion in a corner crying huddled up because her little brother was so insanely angry that she couldn’t bear being near him. It wasn’t safe. That was years ago and since then we have done a lot of therapy and worked to ensure Aj gets proper help.

My youngest on the other hand, has no clue what’s up with his brother. To my youngest it’s all about “monkey see, monkey do” and so it’s harder because I have to spend time making sure my Aj isn’t off his rocker and going to hurt someone while at the same time teach my youngest that Aj’s behavior, while not acceptable, isn’t something he is doing on purpose. Aj cannot control it. Aj has medicine that is not working right and he doesn’t mean to be this way. Don’t get me wrong, Aj still has consequences for his actions; he has to for two reasons 1) no matter if his medication is off or not, we can’t go backwards in parenting just to “keep the peace” and 2) his siblings, especially the little one, needs to know this is not tolerated behavior no matter what.  I am having a hard time figuring out how to explain to my youngest that his brother is “different’, that his brother has a condition that makes his moods be up and down. His brother loves him but he doesn’t love the same as sissy and little brother does. It’s different.

IMG_1159Like I said, my oldest grew up with Aj not on medication, then on different kinds of medications until finally we had a person diagnose the mood disorder and use child mood disorder medication to see if that worked, and it did. My oldest has seen the ups and downs and has lived through it. She has seen it play the toll on me as a single Mom, a married Mom and a dating Mom. My oldest has experienced this for longer of a time and she is older so she gets it and she tries to accept it because she knows I will fight to fix this. Always.

I am at a loss on how to work with my youngest so he understands what’s up with his brother. I don’t want their bond broken because Aj’s medication is off and his current psychiatrist intern isn’t really hearing us. She is too new to him and so we have to start over because of this new person. Starting over isn’t an option because 1) we have worked too hard to get here and 2) it’s a negative domino effect to the family as a whole.

How do you work with siblings to ensure they understand what’s up with their sibling who is “different”? Open for advice and suggestions for what worked for you.

 

Fight Fight Fight for what is Right Right Right

When my middle child was born I realized a battle would be fought. Many of them. From the day this child was born I have had to fight for everything that is right for him. Out of all three of my children he is the one who seems to have health issues come up and he seems to get the short end of stick for many things. Amazingly, after all my son has been through, he does amazing in school. Sure he has to work on developing stronger reading skills but he can read, he just isn’t too confident in his reading from what I have seen. Aj has been put under anesthesia at least three times that I can recall and he is only 7 years old. My oldest went under anesthesia once and that was for tonsils and adenoids being removed. My youngest has never been under anesthesia.

Happy Sons Apple PIcking

My middle child has seen various people through out his years and what always seems to baffle me is that the doctors never seem to have proper notes in his files for him. The notes issue is something that I am now dealing with as it pertains to his mental health professionals. For instance, on Friday one of the people at his psychiatrists office read back what the notes said in his file for my conversation I had with the pysch. The notes were inaccurate somewhat and left me wondering what the heck was up. The notes were not what I had thought the pysch had said to me to do and so in turn I had to get back on the phone when the pysch called me back on Monday. Mind you, I say psychiatrist, but she is a “fellow” or what I call an intern. Not an actual psychiatrist who has been on board working this field for years, she is learning. I am also seeing that she doesn’t have any experience with child bipolar as far as I am concerned. I am also concerned she isn’t up to par with the type of medication my son is on and how it is effective to children. Never have I seen his professionals reference “well this does this for adults” when speaking of my son taking the medication. Usually the professionals site what studies have seen the medication do for a child and how a child would take this medication. It’s common sense to me that some medications would be different for child versus an adult.

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Sure Let’s Start Over – Bipolar isn’t To be Messed With Lady

My middle child is bipolar, he has a mood disorder. This is a chemical imbalance in the brain, it’s not something that can be “beat” out of him or “trained” out of him. It’s not that he is a bad kid, as most from outside view would assume. He is a great kid, in all actuality he is a very intelligent child, but he has a mental health condition. This condition makes his brain not work like most human beings, he has issues with taking social ques, he has issues with high and low moods, he has issues with OCD and the list goes on. When my son is on proper medication, he does well. On proper medication my son acts like your typical 7 year old boy; he will test limits, he won’t like the word No, he will want what he wants but his responses are not extreme as that when his medication dose or type is “off”. You see, I have been dealing with my son since the day he was born. It all started with training ourselves and having him see a neurologist and the list goes on to ensure that he was indeed bipolar or not.  We worked hard to rule out any variables in his life, including our own lack in parenting skills, to ensure if he was going to be taking medication it was going to be the last resort option. That was many years ago, every step was taken. We were honest to the people our son saw, just to ensure there was nothing missing in the big picture. We were commended as parents for being so honest about some behaviors that could possibly have been enabled through the years and honest about how we were struggling with a consistent discipline routine. Our honesty is what assisted us in learning proper parenting techniques to work with our son and in turn ended up with us getting the diagnosis I had assumed was right all along from day 1 of his life; mood disorder/bipolar. I knew that was his issue deep in my heart, but the ground work and hard work as parents had to be done and tested before anyone would diagnosis such a serious thing. I am thankful for having met so many wonderful professionals who were willing to work with us first and not just toss a script at him.

photo 4

Welcome to my son being off medication now, no he is still taking his medication, but as a parent who has watched this child, worked hard on ensuring to know him inside and out, I know his dose is off. The issue is that the psychiatrist he sees are switched every so often. We go to a hospital that has interns, each intern has 2 years {now mind you, intern may not be the correct word they use but in essence that’s what it is}. If we are lucky to get in with the intern on his/her first time there we can get a full 2 years with them, sadly our last psychiatrist for our son was on the second half of her term and we were sad to see her go. This is a woman who was there from the onset of medication start for bipolar, she knew our son inside and outside. Our son had grown close to her and was starting to trust her. You see, Aj has issues trusting other people, he is shy, anxious at times and is cautious to let others into his world too quickly. So now here we are with a new psychiatrist, she doesn’t know Aj, she has no clue about his history other than notes on his file, to her he is just a new test case {so to speak}. This disappoints me and has me wondering if I should switch to find another pediatric psychiatrist that has a more consistent stream of people who have experience with child bipolar. The other reason for having someone consistent and long term for psychiatry is so that our son has a way to form a bond with that person. I realize life happens and even in a full time psychiatrist basis they could retire, be sick or leave their job, but in reality there would be more of a chance that the person is there long term for our son. It’s important Aj has a bond with whoever is seeing him so he opens up to them, thus allowing them to really get the full picture of what’s happening, especially when his medication is off.

I called the psychiatrist on Friday and the advice she gave me really only ticked me off to be honest. I was very upset after talking with her and hope to call her today, because she is essentially asking us to start over because “she isn’t familiar with our son from the beginning and she wants to make sure that we are crossing off all the other options”. In reality she wants us to go back to counseling to rule out behavioral issues because his medication he is on is serious. Umm…. sorry no disrespect meant but if she read his file she would see we have walked this line, we went through extensive training and there were times I even was told “you are not sticking with it, you need to” and I learned just how important it is to be consistent with this child to ensure he is never questioned about behavioral when it comes to his medication being off. I’m sorry but when a bipolar child is off, and since he is now larger than he used to be, he can seriously harm himself or others. Punching out a glass window because his new-to-him psychiatrist that he will only have for maybe two years wants to “start over” is not okay in my book. It isn’t fair to our son and it sure as heck isn’t fair to our family!

Fun at Farmers Market in NH

I am disappointed in the conversation that occurred Friday with Aj’s psychiatrist. I am so disappointed in the system that is suppose to help our son have a chance at a “normal” life. I have a call into his counselor and I really hope we can meet with him soon because he was the starting voice for Aj anyways and the psychiatrist WILL listen to him more than me. Which is sad, I’m not a parent who wishes my kid to be on medication at all but he clearly needs it for his own sanity, his own safety and the sanity & safety of everyone around him. My weekend was a challenge with my son, why? Because his medication is off and it’s a waiting game again while I watch my son have highs and lows, have to restrain him often and watch as he falls apart all over again because his psychiatrist wants to rule out everything we have already ruled out with this child.

Vent over.

 

 

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