Keeping track and getting answers

I have been charting Blake's moods and behavior for four weeks now. It's a pain in the neck to remember to do, but worth it. Having something concrete to look back on gives me a clear picture of where he was then and how he is now. I do see improvement. Considering frequency, intensity and duration, I'd say he's about 50% better now overall. He is still obsessed with Pokemon on Nintendo DS, and still frequently argues, constantly pushes (badgers), is oppositional, overly-sensitive, and is consistently over-reactive in his reactions. But I am hopeful, we'll continue to see improvement.

If you are looking for some wonderful charts that you can use or use as a model to make your own, CABF has some super ones....
http://www.bpkids.org/learn/library/mood-charts-list-of-several
(We use "Kimberly's Mood Chart")

I took James off of the Intuniv and do see that he is slightly more hyper and fidgety, but I didn't think the benefits of him being on it were worth the side effects of making him sleepy and I was concerned that it was contributing to his constant "freaking out" and crying. He doesn't ever get aggressive with us, he just cries and cries LOUD. He overreacts as the victim. His ADHD makes it near impossible for him to follow directions and control his impulses and he is frequently getting into trouble for it. His buttons are also easy to push and that is entirely too temping for big brother Blake. I am hoping that once Blake is stable, that situation will improve. I would like to talk to his doctor about trying Straterra on James. I have read that it does not bring on mania (which is important if we have mood disorders in our family) and doesn't have an intense appetite suppression. I have also read that it works wonders for some kids and does squat for others. He is really having a hard time, both at home and at school with his ADHD and his fine motor struggles, so I feel like it's worth a try. I am waiting (and waiting) to hear back from the OT scheduler. There are not a lot of spaces at this center and I need to wait for an opening. That's frustrating.

Not, to be link happy today, but I need to share a great webpage about meds for mental illness -
http://crazymeds.us/pmwiki/pmwiki.php/Main/HomePage

On to getting answers.....We have the first of 4 appointments for Blake in a week and a half. He is going to have a neuropsychological evaluation at UCLA. It is not covered by our insurance company, and is not cheap, but I think it will give us a lot of answers that will help us to help him learn and function the very best he can. I would also like their opinion on the mood disorder diagnosis and my hunch that he may also (or instead of?) have PDD-NOS.

As for me, I am working hard to lose weight and get more organized. I am doing really well, actually. I have a lot of hidden messes, so it's a process. It feels really, really good to have some sort of control back in my life. I am the captain of my ship and I don't like the feeling of sinking!!

Dealing with uncertainty

It's been 10 days since Blake started his news meds and so far, so good. We notice a slight difference, probably about 10% better. Things are still often a struggle, but he has not had a raging meltdown in 6 days. That's progress.

I am trying to keep myself in the present and am having a hard time doing it. My mind is swirling with thoughts and possibilties. I am thinking about how things this summer are going to go, how a cross-country plane ride will be with 3 kids and just myself. Will they be OK in the camp I'm putting them in? What type of side effects will we see with these medicines as the doses go up. Than I worry about how he'll do in school next year, if his love of learning will ever come back.

Then I think how we don't even know what school the kids are going to next year. We have applied to a wonderful charter school the next town over. James is #3 on the waiting list. Blake is #9. Chances are good that James will get in, but likely Blake won't. In that case, Blake will go to another Charter school (which I really like too, but it only goes to the 5th grade). That school is, luckily, minutes away from the other. Then, the following school year, Blake would get into James's school and they would continue there (with Baby L someday!) until 8th grade.*OR* James won't get in and I will send them both to a fairly good local public school and hope that he gets into sometime during the school year.

It's all up in the air. I didn't realize what I planner I was until I was in this situation. I need to be making plans and remembering to stay flexible about them and that is hard. With Blake, I need to be remembering that he is doing the best he can at the given moment and also to have hope that we will soon see him happy, relaxed and even-keeled.

Maybe I can buy a crystal ball on Ebay.

New ABC's - Bipolar

Bipolar disorder in children is a neglected public health problem. It is estimated that 1/3 of all the children in this country who are being diagnosed with ADHD are actually suffering from early symptoms of bipolar disorder.

Through history, bipolar disorder, also called manic-depression has afflicted people like Isaac Newton, Abraham Lincoln, Winston Churchill, Theodore Roosevelt, Beethoven, Tolstoy, Charles Dickens, Virginia Woolf, and Ernest Hemingway to name a few.

Bipolar disorder in children presents very differently from how it presents in adults. Adults typically experience a more classical pattern of mood swings. Children rarely fit the recognizable pattern. They have a more chronic course of illness where they cycle back and forth with few discernible well periods in between.

Almost all bipolar children have certain temperamental and behavioral traits in common. They tend to be inflexible and oppositional. They tend to be

extraordinarily irritable and a large majority experience periods of explosive rage.

They tantrum for hours at a time. Siblings and parents (most often mothers) can be threatened and hurt. The rages are typically triggered by a simple parental “no”. The child goes into an almost seizure like tantrum where they may kick, hit, bite, punch, break things and scream foul language.

Bipolar children don’t often show this rage to the outside world. Parents, often due to their own shame and guilt, keep this behind closed doors as they desperately try to find the answers. Even if parents are able to talk about it, friends, family and teachers cannot usually imagine the reality in which these families live.

No one symptom identifies a child as having a bipolar disorder, but if hyperactivity, irritable and shifting moods and prolonged temper tantrums happen AND there is a history of mood disorders and/or alcoholism coming down either or both sides of the family tree, bipolar should be suspected.

Children with Bipolar disorder frequently experience separation anxiety from infancy and it lasts longer than their neurotypical peers. They also suffer from horrible, frightening and violent nightmares. They are often extremely oppositional because they lack the flexibility that allows a smooth transition from one activity to another. Frequently, children with Bipolar are extremely sensitive to stimuli of all sorts and may not be able to tolerate tags on clothing, certain fabrics, sounds, or odors. Many children with Bipolar may have difficulty making and keeping friends. They are often described as bossy, intrusive, or having to always have their own way.

‘The Bipolar Child” by Dr. Demitri Papolos is an excellent book (I credit the above information to Dr. Papolos). The website, bpkids.org is full of information if you are interested in learning more about this disorder.

I am posting about this because my 9-1/2 year old son was just diagnosed with a mood disorder and it took over 5 years of me knowing something was not right and no one truly helping us. In one form or another, all any psychologist or therapist could offer was to give rewards and consequences. Be more consistent. Be firm. Use 1-2-3 Magic. Make him understand that no rewards come without good behavior. Use complicated points systems to entice him. These methods failed miserably because they came with the assumption that he could control himself. He could behave. He was just choosing not to. That is an assumption that caused me a lot of resentment.  I don’t think I will ever get over how bad I feel about all the yelling, threats, consequences and at times, belittling comments that I made to him.

I was angry - angry that we were trying as hard as we could and it felt as if he was spitting in our faces. We were trying so hard and we were not making a bit of progress. It was actually getting worse. His tantrums were still happening, only now, he was a pretty big kid and more than capable of harming me.

I always thought it was behavioral. I never truly considered it could be medical.

When he was 7 years old, he was diagnosed with ADHD. With desperation, we agreed to try stimulants. I have since learned that the use of stimulants can trigger mania or depression in children with mood disorders. Some studies have shown that the use of stimulants can cause the bipolar disorder to manifest at an earlier age than other kids without stimulant exposure.

In my son’s case, when the stimulants were not in his system and working, he was MUCH more hyper than he had ever been before even going on the stimulants in the first place. I told the doctors that too, but no one listened.

Another family of medicine that children (and adults!) with mood disorders need to avoid is the use of antidepressants. We found this out the hard way (see my post on Zoloft). Antidepressants can cause havoc in a child suffering from a bipolar condition, increasing anxiety states, potentially inducing mania, more frequent mood cycling, increases in aggressive outbursts and temper tantrums and even psychosis. Many children need to be hospitalized it is so severe.

As for us, we have now made the very difficult decision to medicate our son with both a mood stabilizer and an anti-psychotic. Since these medicines can have some serious side effects, it was not an easy decision. I am still unsure if we’re doing the right thing. But our family was homebound. We were paralyzed from the effects of this and both my husband and I were literally ill from the stress and constant chaos. We are also starting ABA therapy through our local Autism treatment center and are hopeful that the combination of medicine (biological treatment), therapy (behavioral treatment) and our own education about how we can best help him, can bring us all to a place of peace.

Though I am anxious and worried, I am still hopeful about my son’s future. I am also doing my best to just live in the “now”. Thinking about the future, trying to predict and prepare for all the “what-if’s” is too over-whelming. I just know that I love my son with all that I am and I will do whatever it takes to help him live the very best and the very happiest life he possibly can.

Insurance and Uncertainty

I am in the process of finding new healthcare insurance for our family. Being in the crisis with Blake, we were faced with the possibility of having him hospitalized at a mediocre (at best) children’s psychiatric hospital in Torrance, CA. Not surprisingly, Kaiser doesn’t have a contract with UCLA, so that wasn’t a possibility. I knew we needed a quality multi-disciplinary healthcare team for both Blake and James. I knew we needed experienced, cutting edge doctors in the mental health field. We were just not going to get that with Kaiser HMO.

So, we’re getting quotes right now, and plowing ahead, privately with ABA therapy. We are leaning towards starting Blake on Risperdal. I don’t know if it’s the right thing to do or not. I guess I am taking a leap of faith because we’re at the point that our family life is dysfunctional on a daily basis.  I have started charting his behavior and moods and can really see that transitions and changes in plans set him off. Also, stopping video game play is another big trigger.

The more I read, the more sure I become that Blake has Aspergers Syndrome. I would like him to be accessed though the UCLA Autism clinic (which I have read is world renowned), but it’s over $5000 cash for an assessment, so that will have to wait until we get the new insurance.

I wish we could wait to get a diagnosis and to see true quality child psychiatrists with the new insurance, but I don’t think we can wait. It is so, so hard on us all.