At a breaking point and not sure where to go from here!
My son just turned 8 years old, has not been officially diagnosed yet with bipolar but I am pretty sure he will be soon. He was first evaluated at 3 by the public school system(child find), the only diagnosis that could be applied at that time was emotional/social delayed. Then at 5 diagnosised as Adhd followed a year later by Odd. He has been in a special ed-program since 3 and I held off on meds because they kept telling me he might get better in a structured enviroment, he didn't. A year ago I broke up with his dad and I made a huge move from WA to FL to stay with my mom so that she could help me with him and because his dad just couldn't deal with it. Also so I could devote more time to spend with him thinking that might help. When I moved here I did everything I could for him I took him to get allergy tested, he seen a nuerologist, had full blood work done anything I could think of. It took a lot of work (went through 2 others)but I found a pyschtrist I trusted and he has been seeing her for the last year and has been on every Adhd med in the book, he can't do any stimulats cause they make him have even more rage attacks than normal. The others work for a short time, if they work, then stop. My mom can not really deal with him and so I am often called to leave my school to get him, even being in a class specifically for children with behavior problems we were often called to come get him. To me he seems to cycle. He seems to get in to these moods that are just horrible to deal with where anything could set him off he starts screaming, hitting kicking and throwing things any time something frustrates him or makes him mad (which doesn't take much when he's in this mood) he also eats non stop and often wakes up at night or earlier than normal when he seems to be in this mood. I do not have bipolar in my family but I really think his dad might. After 11 yrs with him I often seen patterns of him being very down or very up, he seemed to be self medicating with alcohol. Without a definate family history his pyschtrist hesitant to make that diagnosis without trying all other posibilities first. But, about 6 weeks ago he had to be hospitalized because he was threating to kill people and also threating to kill himself with a knife to the head. While in the hospital they gave him a diagnosis of Major Depression Disorder and put him on an antidpressant. A week after his release I took him to his normal pyschtrist who does not feel that this is the right diagnosis and says that she is now really leaning toward a bipolar diagnosis, but wanted to give the antidpressants time to work to see if they help. We will be going to see her on Monday, but I am not sure how I will make till then. He is back to the some kind of behavior that he had right before he went in to the hospital except without the verbal threats. He was suspened from his summer day camp for two days for throwing a chair and kicking a staff member and I was told one more incident and he would be kicked out! I looked all over for a program that specialized with children with behavior problems but couldn't find one, so I went with one that would have lots of physically activities. I am now at a loss though because if he gets kicked out of there I am not sure what I will do. My mom can't handle him all day and so it means I will not be able to go to school or even find a job for that matter. I am just so frustrated it breaks my heart that he is not able to be happy and enjoy himself. I just don't know what else to do for him I have done everything I can think of and he just seems to be getting worse! His dad even told me maybe I should surrender him to the state. But this is my child I could never do that, I won't give up on him! How do I do this when I can't go to school to better myself or work because I may have to leave or quit to take care of him? I am sorry this has been so long it is the first time I have spoke on here and all the background info seemed important.
Welcome to CABF. It sounds like you've done all the right things over the years. It's so important to rule out systemic illness, such as allergies or thyroid, when evaluating a child with these behaviors. Also, if it were purely a learned behavior, I think all the structure in his life would have helped by now, but obviously things have deteriorated.
I am also impressed with what you have shared of your pdoc. I would be concerned if things are worse on an AD, however, as AD's can induce mania or cycling in a person with BP. It happens within 2 - 4 weeks typically. This doesn't happen to everyone, but you need to be aware of it. I am suspicious of a dx of MDD in someone who is having such severe rages. It does seem more likely to be a BP depression, and the treatment for that is mood stabilization. If you have any concerns about your ds's safety or your own, don't hesitate to take him back in to be evaluated. Good luck with the pdoc appt on Monday, and let us know how it goes.
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Brenda,51, CABF Parent to Parent Volunteer
Mom to A, 16, BP, Tourette's, OCD, ADHD: Eskalith CR, Trilafon, Lamictal, Seroquel, Cytomel
E, 15, BP,AS: Seroquel, Eskalith CR, inositol
B, 13 & H, 11
Married 17 years to DH, 50
FROM CABF: 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.
Know you are not alone and from what our Psych has told us it isn't so much the dx as the treatment that is important.
When Sammie was diagnosed with BP at such an early age it was not a diagnosis that was come upon lightly. We noticed little things with her from the beginning and brought them to the attention of her pediatrician, her social worker and guardian ad litem and were always brushed off ater they only spent 10 minutes with her. They didn't take the time to even try and see what we were dealing with. We told ourselves she just needed more structure. It was just a stage. Then at age 3 we enrolled her in preschool... I would come early and watch her interactions in class from a distance. She stood out like a sore thumb. After only 3 months they asked us if they could move her back with the younger kids to give her more structure. again it came back to that. By the end of Christmas vacation I was so frustrated because Sammie is a very bright child and she wasn't getting what she needed from school. She needed to be challenged and instead she was back to basically just daycare to manage her behavior. I remembered a conversation I had when we first had Sammie placed with us. It was a mom of one of my older daughter's frineds. She had mentioned then that I should have Sammie evaluated to see if there were any services that she qualified for. I was feeling so down and like I was failing her. I called her and she helped me get her evaluated for special services. Sammie qualified in the area's of fine and gross motor and behavior. At this point with the family history that we knew we were fairly certain that she had some degree of ADHD and possible ODD. Sammie started therapy right away in several forms.Sam's behavior didn't start to get better she was still slowely getting worse until I was getting calls from her daycare provider after she couldn't get her to stop screaming for 2 hours. She would lash out at the other children for no reason or just cry constantly with no apparent cause. I remember the daycare provider and I in the morning would greet each other and she would ask if we had our Sammie back or if she was still struggling. and it was a constant roller coaster like that. I could actually track the days and it always seemed to have a rythm to how long it would last and then how long we would have our sammie back. After a pretty traumatic instance between Sam and another child I called her pediatrician's office to schedule an appointment to talk. When I explained why they asked me to wait and they would have him call me back. When he called he told me that what I was explaining was outside of what he could help us with and that he would give me a referral for couseling. I called all of the names that I was given and no one wanted to work with a child of such a young age and I kept being passed back and forth from clinic to clinic and came up with nothing. After sharing our struggle with a friend I was actually put in contact with an aquaintence who had gone through almost and identical experience with her daughter. After talking for what seemed like forever she gave me the name of their Dr who had helped them so much. I called and within a month we were going through the evaluation process. Knowing the family history since Sammie is a biological relative we were able to put quite a bit of the puzzle together. There was a history of mental illness on the father's side and very high probability on the mom's side as well. Because of the extreme hyper activity and lack of impulse control and the defiant behavior we were given the dx of ADHD with ODD and a caution to watch her mood instability as she was genetically at high risk for BP. He felt that her rage even with ADHD was outside of the range for a typical 3 year old. Coming from a point of feeling completely hopeless we finally thought we were on the right track to get some relief not only for us but for Sammie as well so that she could start to experience life the way a 3 year old should. And no we weren't thinking she should be perfect but at least happy 30% of the time. We continued with the program through the developemental preschool and also had her evaluated for services with the children's therapy department at our local hospital. She again qualified for PT and OT services. Our Dr started Sammie on a very low does of an non stimulant ADHD med and cautioned us that if there was a chance she was bp we would know because she would have the opposite reaction to the meds. He was right. She started sleeping through the night finally but her mood worsened. She became more violent. Although her therapists noted that they were able to get her to do more and her attention did improve. The worsened mood was too much as it was already a challenge before. When we were finally prescribed Risperidone we saw a change in the right direction at last. Unfortunately along with that came the dx of Bipolar Disorder. Since there is no blood test to tell you beyond any doubt that this is the dx we live with the constant doubt and feeling that maybe we have it wrong. The first time we decided to see how she was without meds and did a med wash with the help of our Dr we were slapped in the face with the realization of how much we had gotten used to the new Sammie and how severe her symptoms were without meds. We went months and pretty much lost our whole summer thinking that next week she will be better, and then the next week. We took special parenting classes for parents with difficult children and found that we were basically already doing everything we could. We have sought many other opinions the past few years and every professional we see tells us that we have gone over and above what most parents would have done as far as advocating for answers for our daughter and we are already seeing the best pediatric psychiatrist in our area.
I guess with that long story about our experiences what I want to say is never give up advocating for answers and know that you are not alone.
Hugs to you <3
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Teresa - Mom of 3
C - typical
K - fashionista
Sammie - age 6, BP, ODD, ADHD, fine and gross motor delays