New DSM-V Diagnosis.... What is TDD ~ temper dysregulation disorder???

This new diagnosis for children just came out this year in the DSM-V... I am intrigued by this added diagnosis that the American Psychiatric Association has labeled as a brain or biological dysfunction. Here is what the symptoms are for TDD -

Temper Dysregulation Disorder: This proposed new disorder is seen as a brain or biological dysfunction, but not necessarily a lifelong condition. It can only be diagnosed in children over the age of 6, and onset must begin before a child is 10. 

The disorder is characterized by severe recurrent temper outbursts in response to common stressors. To have the disorder, the person has to have had these symptoms for at least 12 months, and cannot have been free of symptoms for more than three months at a time. 

• temper outbursts involving yelling or physical aggression
• overreacting to common stressors
• temper outbursts occurring on average three or more times a week
• nearly everyday the mood between temper outbursts is persistently negative.
• in the past year the patient has not had a period longer than a day of elevated or euphoric mood.

 I guess I am just wondering if those of you who know "JC" well, think this or the bipolar symptoms fit him better. The bipolar symptoms are -

Bipolar: Patients with bipolar have one or more manic episodes and often also experience major depressive episodes.

Manic episodes are when a person experiences an unusually euphoric or irritable mood that lasts for at least a week. During a manic episode a person may:

• have an inflated self-esteem that can reach delusional proportions
• feel full of energy and be more talkative than usual even while not needing much sleep
• do pleasurable things to excess, often with painful consequences, such as engaging in unrestrained shopping sprees, sexual indiscretions, or foolish business involvements
• it's common during manic episodes for the person to alternate between euphoria and irritability.

Major depressive episodes are described as at least 2 weeks of depressed mood or loss of interest. The patient also shows additional symptoms:   trouble sleeping, lack of interest, feeling sad, hopeless or discouraged, decreased energy or sense of worthlessness and guilt, and difficulty concentrating.

This is what researchers are saying about giving children a diagnosis of bipolar....

"Research psychiatrists worried that the children were being given a label that wasn't right for them, and saddled with the sentence of a serious mental illness for the rest of their lives."  

I also wonder really whether it makes much of a difference in the treatment of either diagnosis. I'm sure that I would rather not have JC labeled with bipolar for the rest of his life if that is truly not a valid diagnosis for him, however, if not, what treatment are the psychiatrists and doctors going to change for a diagnosis of TDD????

It is a little scary I think, for some of us parents who have had our children labeled with this disorder and have tried so many different meds, therapy, counseling and whatever we can do help our kids. Now to think.... if his diagnosis is changed, will insurance cover his meds that truly are helping, will he still receive the help or will insurances decide it is a lesser diagnosis and these kids don't need all of that??? (Obviously they do....) I am hopeful and will be praying that maybe it will spark new interest in researching new treatments and modifications that will help kids like JC. I am interested in comments on this topic especially. I had just heard about this new diagnosis being added, so I am curious to hear feedback from "normal" (as if there is such a thing...) people as well as parents with kids of special needs, either on the autism spectrum or mental illness spectrum...... 

The link below is the article where I researched some of the info. above.... as well as others, but this is really helpful. Good to read, so click on it for more information....

 I found this information here....

On a separate side note.... JC is still on the intuniv. We have been slowly titrating him off of the depakote (I have never been at ease with this med!!!) The intuniv seems to be helping quite a bit in focusing at school, but is definitely making him sleepy even when he takes it during the day. We are hoping he gets used to it day by day and as the depakote is weened, that the full benefits will be seen. The intuniv so far is being given at night and strangely enough, he wakes up refreshed and awake, but mid morning wants to fall asleep and has done so in class a few times. Then around early afternoon, the same sleepiness occurs and he is "OUT", his teachers say. They do not think it is behavior driven, but medication driven. So..... while I so far like the intuniv's workability for school, I don't know if the sleepiness side effect of it will outweigh the benefits and make it not usable for JC, which would be such a bummer! Anyways, just thought I'd update anyone wanting to know about the new med. <3    <><   

Food and Mood

     So... Food and Mood. It plays such an important part in a typical person's life, what does it play in a bipolar child's life???? For JC, it is one of the MOST important parts! Not only does it affect him, it affects our whole family. When he says he's hungry, it's time to find some food immediately if we can. We are really working on trying to get him to eat better and less because JC's medication makes him lethargic and hungry.... not a good combination. While he certainly is not obese, he is a little overweight and much less strong than most kids his age.
      
     Yesterday, we spent the whole day at Roaring Springs (a local waterpark). It was a ton of family fun and JC behaved fairly well for most of the day save for a couple little things, no big deals, really. We had fun with him and he had fun with us (this doesn't happen as often as it should when we take JC with us on outings)!!! When it was time to go, there was little to no fight, of course he was "starving" (he had eaten breakfast, dinner and a snack already). Another great thing - no fight to leave!  My husband had to leave the water park an hour earlier to pick up his truck from the "tranny shop", so we decided to go to dinner out with his cousin and aunt who had come along for the day. We had to stop by and pick up my niece from Grammy who was at a near by fast food chinese restaurant first. JC got out of the car and wanted food. We were not eating there, my other son doesn't like it and neither do I really, so we had already decided we were not eating there. That fact didn't stop JC from starting to "fight" for his way. He was hungry and there was no stopping him. It didn't help that his cousin and aunt had decided they were tired and were just going to eat there, but we understood... and I almost thought it might be better to just go home at this point. When we got in the car, JC was throwing a big fit and kicking the backs of the seats and pounding his hands because we had decided not to eat there. I decided to just try and get dinner at the little "diner" in the same shopping center, which was our original plan. JC didn't like it, and declared that he was no longer hungry and would not be eating there. My other two kids and I ignored him and got out of the car and proceeded to walk into the restaurant. JC followed of course, but was not happy.  We were quickly seated, thankfully, and all of us but JC were checking our menus. JC decided to throw crayons (he is 12&1/2, mind you, and looks a bit bigger), crumple up his menu and begin to bug his sister sitting next to him. So, I quickly changed seats and tried to calm him down to look at his menu so he could make a selection. Instead of calming down, he got worse. I was embarrassed and many of the other people there were staring at us - I tried to tell him that to use that as a tool to help him stop the behavior, it didn't work. He was screaming and yelling because he was mad / out of control and I was trying to cover his mouth to keep him quiet. It just wasn't a good situation and at the same time I was looking for his "melt in your mouth" medication - found some... He kicked me under the table as I covered his mouth and told us all to "shut up" when I let go. I decided that we would just leave and grab McD's on the way home - my worst choice, but only choice I thought... when JC heard me tell the kids that, he perked up, looked at his menu and circled his choice?!?!?! Who knew????  I quickly gave him his medication while he would take it! He calmed down enough to tell the waitress (who wonderfully took it with calmness and no questioning of what had gone on) what he wanted and I just prayed the food would come fast! During this, I had made a quick call to Devon, my husband, to tell him what was going on and that we were going to try to stay. He was on his way back and decided to eat with us. JC's behavior went from HORRIBLE to better instantly when food hit his mouth. Devon didn't even experience the difference, just the better mood when he got there... 


     It is just amazing how much food affects his mood. He still wasn't in a great mood, but with a little food, he definitely got better. I must remember to carry healthy, low fat snack options in my car from now on. I don't want to "give in", but want our lives to not become at the will of JC. Anyways, we were all exhausted and went to bed within an hour of returning home from Roaring Springs with smiles on our faces!!! :) In the end, we all remembered the fun we had as a family all day, and as my middle one would say, "tomorrow's a new day" and in the words of JC "tomorrow's a start over"....

Football, Friends and every day life...

JC is doing better than to be expected on his football team. He is definitely causing some social issues to arise, but more occasional than I thought he would when we first signed him up. He has a wonderful, understanding coach who just keeps encouraging JC. JC likes him and seems to want to play "his position" well. He is very gentle with JC but expects him to complete the same things the team has to complete in training and during game time. Sometimes this frustrates JC, but most of the time, he seems to want to do it.

JC's friend who lives next to us, won't be going to his school this year. He changed to a smaller middle school and so JC is super disappointed. I am too. I was so glad that JC finally seems to have a friend. I am glad that at least they can hang out after school. Hopefully JC will find another friend like him, or not so much like him lol, this year. It takes a special, patient kid to be friends with kids like JC.

We still haven't been approved for the correct dosage of intuniv! That is frustrating. His psych is saying it has been approved, but the pharmacy can't get it to go thru. It has been a week!!! C'mon! Monday I will go down to pharmacy again to see what the problem is that we are getting two different answers. I am praying that it will help him socially and with us as parents most of all. School is starting soon and I am fearing how it is going to start out. I thank God that He is in control and has placed the right people to work with JC. Pray for us as we begin a new year, it is always tough during transition times...

Tonight was a difficult night getting JC ready for bed. It was earlier than normal because we have to be on the fields super early tomorrow morning for pictures and stuff. He was mad because he didn't get to go play with his friend after practice. That started a negative downward cycle. He seemed to get a bit better as he ate a small snack, took a shower and we prayed with the kids. Then, our middle son who sleeps in the same room, came out worried. JC had been saying mean things to him and he didn't want to sleep in there anymore with JC. JC of course, denied it and said that we all weren't real. We calmed him down as well as possible, talked to him about his behavior and prayed that they could both get to sleep as soon as possible with no further incidents. So far, so good...

We are looking into possible respite care for JC. We have not been able to find much info. here in our state about it. There doesn't seem to be many people who will do it and its difficult to find out how to go about it. We all need it though, including JC. If you think of us... pray that we would find someone qualified and willing, who would take him occasionally so we could have a break. Thanks...

Well, that's all for tonight. I am tired and have to wake up at around 5, so sleepy time for me.... G'night.

First Post... New Med... Hopefully new JC...

So.... a few online "friends" whose own children have mental disorders and JC's psych recommended using a blog / journal for therapy for myself :) I love to read, so I thought, well.... I guess I could write too. So this first blog may be a little long, sorry.

So here it goes! Life with JC - our 12 year old bipolar (finally dx'd at age 9), adhd, sensory integration disorder son.... it's been a wild ride so far and I'm trusting that it will continue to be for long time to come; which is why I am writing this blog.

A little history...

We fostered JC and his brother when JC was 2 years old. Adoption was finalized right before JC turned 3 (We adopted dd a few years later - the boys wanted a sister so bad back then!!!). JC and brother were both in a foster home prior to ours, but the parents were older and just couldn't take both boys and did not want to split them up. They were wonderful foster parents whom we included in the boys lives as much as possible when we lived in the same state. We still keep them updated on occasions and share Christmas cards and such. As for biological parents, we never met them, but heard and read some pretty harsh reports of what the boys went through prior to foster care as well as health histories on both father and mother. Biomother has a medically diagnosed behavioral disorder, was adopted herself as a child, and is self diagnosed bipolar (never medicated), which explains quite a bit about her behavior as a "mother".

After adoption, we continued to explore all options and diagnosis for JC. I know God has given us this child for a reason and we love him so much that we want the best possible for him!! He had already been kicked out of many daycares and proved to be too difficult for many babysitters and nannies the prior foster parents had tried. I decided to be a stay at home mom to provide some much needed stability and consistency. The prior foster parents had also tried to get him diagnosed through a psych dept. at UCLA. We continued with the assessments. He was dx'd only with PTSD with possibility of bipolar (yes, UCLA had already mentioned this at age 3!!!). As we continued on the path of diagnosis, we went through PTSD, Asperger's, RAD, PDD - NOS, sensory integration disorder, ADHD and finally to his main dx of bipolar.

We currently treat the two main concerns of ADHD and Bipolar. Since the stimulant meds for ADHD make our son extremely irritable (even more than usual!!) and have some psychotic episodes, we no longer medically treat this condition. He has taken many, many, many meds for bipolar. It has been a wild ride trying to get the medications straight. He was in a mental hospital for two weeks a few summers ago and that nearly made ME be admitted, lol!!! I have researched just about everything out there that seems to fit his behavior and follow several blogs and search up medications often. I am his strongest advocate and have chosen to do all I can to keep him out of the hospital ever again (I know that is probably not possible, but I do try)! Since he is almost a teenager, we are dealing with all the adolescent behaviors along with medication changes again due to weight, hormones, etc..... So...on to today!

Today, we went to the psych because she put him back on Depakote a few weeks ago. I don't think there has been any change or even worse in JC's behavior, my dh thinks there hasn't been any change, but that it is def. not worse, so that is the info. I shared with the psych. She is very open to my research and so this time, I brought up what I had heard about Saphris. He was currently taking 500mg. Depakote per day taken at night, 30 mg. Abilify taken in morning and 2mg. Risperdal (risperidone) Mtabs three times a day. So, she took him off the risperdal and gave us samples of Saphris to take 10 mg. twice a day. She recommended Intuniv if this doesn't work. So, I am going to have a tough 10 days before we see her again if this Saphris does not work. Plus, the Saphris is not covered by insurance due to it being a new drug and not approved for kids yet - it's like $200-300 per month!!!! YIKES! Psych can keep us with samples for awhile, but after that ???? So, I don't know if I'm hoping it works or doesn't work!! I've heard some great things about Intuniv too!!!

Since we just started the Depakote, psych wanted a full bloodwork panel done today. JC HATES getting blood drawn! We decided to try the small lab there at the office before heading to the hospital. JC has had to go to hospital many times before because he won't let them take it there at the office and the hospital has staff that holds him down (that's after I struggle and drag him out from under the chairs in the waiting area). I was praying the whole time.... still, JC didn't let them draw blood, he was hungry and irritable. So, the lab tech said to go have some lunch and then come back to try again (she was so wonderful and patient). We decided to try this since the hospital is so traumatic and my other two kiddos really didn't want to go with. After lunch, JC was much more agreeable and was brave and actually did it!!! I was so thankful and JC was proud of himself. It ended up being a positive experience and JC has been having a fairly good day today!

I will fill in some other points of our lives with JC - some of his behavior and actions towards family, siblings and others - in other blog postings so you can get an idea of how we function in all the madness :) on a regular basis.

Until then, remember Jesus loves You and will only give you as much as you can handle (with His strength and help of course!!!) I must rely on Him daily, hourly, minutely to guide me in our struggles with JC and the bipolar illness. I am so thankful for my husband and extended family who understand and try to support us as much as they can!!!

That's all for today folks,

Missy