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.

ADHD Meds & Treatment - My opinion

My opinion is, first and foremost, that when you are talking about meds for ADHD, it's a matter of choosing the most effective with the *least* (or more tolerable) side effects. Giving your children these drugs is not something anyone goes into lightly

Both my boys are in Intuniv for their ADHD and I have liked that much better than the stimulants.
From what I am observing, Intuniv doesn't seem to change personality, though sometimes I think it might deprive the kids of some sleep (they wake 5:30am many days) and thus make them whiney/grumpy.

My 7 yo is on 2 mg and 9 yo is on 3 mg. I am going to do a trial off of it with them this summer, just to check, but overall I have been happy with how mild the side effects are (after the first 2-3 weeks of use). The only thing I notice is they fall asleep earlier and more easily.

On stimulents, they both had horrible, manic-like energy rebound in the am and late evening. DS1 used to just run back and fourth, back and fourth 100's of times throwing up a football and catching it. He would do this when the meds wore off every night. Both boys were also stick thin and still losing weight. When we took them off stims., they shot up in height, both put on weight and looked so much healthier.

BUT, for my kids, the stimulants helped their fine motor control, organization, and focus and they aren't doing as well in those areas right now on the Intuniv. The Intuniv seems to mellow them a bit, and they are doing fine overall in school on it. They are still forgetful, super hyper and silly several times a day, occasionally aggressive and they still complain about schoolwork.

So, overall for my own kids ADHD meds, stimulents *worked* better, but with pretty nasty side effects, Intuniv, works OK and the side effects are mild.

We are in the process of getting in-home therapy started for Blake. The therapy were doing is going to be ABA based...like kids on the autism spectrum often do.....most (if not all) of DS1's struggles are very much in common with what Autism spectrum kids have issues with.

For example:
*  Bike riding, shoe tying
* Talking on the phone

* losing in competition/stacking the odds in his favor

* School - Not trying hard

* Social - Being bossy and controlling

* arguing to get his way/not accepting No as a final answer

* Being aggressive at times

* Fine motor (cutting, penmanship, printing, word spacing)

 

I think therapy can greatly help with all of the above. We'll see!

WARNING about SSRI antidepressants

I had to share our experience (which still isn't over.....)

Blake started on Zoloft 14 days ago. He had been so
negative lately and so I was willing to give it a try. This past Thursday, he
went into another students locker (actually a good friend of his) and stole his
Pokemon cards. Then came home Friday and absolutely erupted at me (w/ major aggression) over having had his cards and DS taken as a punishment, my hubby came home and we dealt with the violent eruptions for 75% of the evening. He was even threatening to jump out of the window. This morning (Saturday) we went right into hypomania/agitated/aggressive state and once again was saying I'm going to kill myself!

We then decided to take him to the ER. Long story short, we only saw a Psychiatric Social worker (in contact with a Psychitrist) and she agreed with us that the meds were probably to blame, but never mentioned serotonergic disinhibitation specifically. (I hadn't discovered it on the internet at this point).

We decided against hospitalizing him at a place 1-1/2 hrs away and took him
home, first stopping at the drug store to pick up the Benedral the hospital had
suggested. My son wanted rice krispie treats and I said no. I discovered in the
car halfway home that he had stolen then. (you have to know that my son NEVER stole before this week!)

At home, he erupted, very, very agitated and was just full out attacking us. We called 911 and the police and children's crisis response team (CERT) came. They talk with us, CERT did a safety contract with Blake and with us, they were really nice.

10 minutes after they left, he erupted once again. He raged and attacked us for nearly and hour until he slammed his finger in the door by accident and that pain snapped him out of the rage.

Then, finally and thankfully, the Benedral kicked in.

Besides the day my dad died, this has been the worst day ever.
What he has, I found on the internet. The dumb "experts" at the hospital couldn't tell us this.....he has seratonin disinhibition, also called Frontal Lobe Syndrome. He's off the Zoloft as of this morning and I am hoping each day gets a little better and that he's back to normal ASAP!

But I am so glad I found this website:
http://www.dr-bob.org/tips/split/Disinhibition-and-SSRIs-an.html

It described EVERYTHING my son has gone through b/c of the Zoloft.

I also learned that the MAJOR and sudden apathy he has had about school, is also likely related to the SSRI's.

SCARY what it did to his brain! I can't believe a med can make a person have
kleptomania! (among all the other dramatic effects!)

I feel so guilty and so dumb to have ever let him be put in antidepressants. It's just the Intuniv, and the Intuniv alone from now on. We'll take him negative! It's a walk in the park compared to this. My poor baby boy. I am broken hearted for him. Especially when I read that one doctor on the above site commented that children are "embarrassed and very ashamed about what they did while "under the influence" of the SSRI's." I feel very responsible and hope beyond hope that he is feeling better ASAP!!

Turning Education on it's big fat head!

Consider, finally, the case of education. Seymour Papert, known for his work on artificial intelligence, began one of his books by inviting us to imagine a group of surgeons and a group of teachers, both from a century ago, who are magically transported to the present day.

The surgeons visit a modern operating room and struggle to understand what’s going on, but the teachers feel right at home in today’s schools. Kids, they discover, are still segregated by age in rows of classrooms; are still made to sit passively and listen (or practice skills) most of the time; are still tested and graded, rewarded or punished; still set against one another in contests and deprived of any real say about what they’re doing.

Those tempted to point defensively to updates in the delivery system only end up underscoring how education is still about delivering knowledge to empty receptacles. In fact, snazzier technology -- say, posting grades or homework assignments on-line -- mostly serves to distract us from rethinking the pedagogy. Interactive whiteboards in classrooms amount to a 21st-century veneer on old-fashioned, teacher-centered instruction.

Even before the implementation of what should be called the Many Children Left Behind Act, states and school districts were busy standardizing curricula, imposing more and more tests, and using an array of rewards and punishments to pressure teachers and students to fall in line -- with the most extreme version of this effort reserved for the inner cities.

Here’s what would be new: Questioning all the stuff that Papert’s early-20th-century visitors would immediately recognize: a regimen of memorizing facts and practicing skills that features lectures, worksheets, quizzes, report cards, and homework.

(Above by Alphie Kohn)

Instead school’s would best educate their students and prepare them for the future using a constructivist approach to learning. These are the five central tenets of constructivism –

• First, constructivist teachers seek and value students' points of view. Knowing what students think about concepts helps teachers formulate classroom lessons and differentiate instruction on the basis of students' needs and interests.
• Second, constructivist teachers structure lessons to challenge students' suppositions. All students, whether they are 6 or 16 or 60, come to the classroom with life experiences that shape their views about how their worlds work. When educators permit students to construct knowledge that challenges their current suppositions, learning occurs. Only through asking students what they think they know and why they think they know it are we and they able to confront their suppositions.
• Third, constructivist teachers recognize that students must attach relevance to the curriculum. As students see relevance in their daily activities, their interest in learning grows.
• Fourth, constructivist teachers structure lessons around big ideas, not small bits of information. Exposing students to wholes first helps them determine the relevant parts as they refine their understandings of the wholes.
• Finally, constructivist teachers assess student learning in the context of daily classroom investigations, not as separate events. Students demonstrate their knowledge every day in a variety of ways. Defining understanding as only that which is capable of being measured by paper-and-pencil assessments administered under strict security perpetuates false and counterproductive myths about academia, intelligence, creativity, accountability, and knowledge.

(from http://www.ascd.org/publications/educational-leadership/nov99/vol57/num03/The-Courage-to-Be-Constructivist.aspx)

And this….this is what the school I am trying to get the boys into is all about. I want it so bad I can taste it. Please, fate of the universe, Gods, Goddesses, All the powers that be in the universe…..Please let both of my children to get into this amazing school.  

The Kids (and I) are Alright!

Geez. After my last post, I probably left my readers a bit concerned! I'm still here. Just busy and trying to focus on the positive.

We took younger son, James off the stimulants as well. He had lost 9 pounds in a mere 3 months! So we put him on the Intuniv too. He really did well with it, just the starting dose of 1 mg worked great for him at school, so that's where we kept the dose. School is saying he's still doing really well. Only slight issue is that he's tired in the afternoon, but his teacher is really great about it and just kinda meets him where he's at.

At home, we're continuing to have a real problem with the whining and crying over every little frustration and disappointment. The fact that he does not do it at school tells me he must have control over this, so we're working really hard at it; Ignoring him (the old "I can't hear you when you're talking like that") and reminding him that he's working on using his words. Honestly, I'm not seeing any results with that. It's frustrating and frankly, annoying.

I think it's really difficult for him in that he really struggles at school. Academically, he is average, but fine motor skills are such a challenge for him that I believe it takes a lot out of him to complete all the schoolwork and then come home and do homework. He's just done. They do so many work sheets at that school. It's ridiculous.

I am trying to get both boys into a new charter school in the next town over. They have a "whole child" approach and much more hands-on learning. I believe that would help both Blake and James. I don't think most schools are teaching kids the way they learn best. Children should develop a love of learning, so that they'll want to be life-long learners. They should have a personal investment in their learning.

In today's society, with all of our technological developments, kids no longer need to be "filled up with facts". They need to learn how to learn. How to think critically. How to question, investigate, test theories, collaborate and connect to their world.

I am very excited about this school and am hoping with all my heart that both boys can attend next year. The even better news is that it goes all the way up to the 8th grade!

Blake is doing pretty good. He's gained about 8 pounds and looks truly healthy. He's still oppositional much of the time, but the frequency and intensity of his violent tantrums have decreased probably about 75%. I'll definitely take that.

So, we're hanging in there. I'm still slightly in "catch my breath" mode, but I'm content. My kids are alright for right now. My marriage is good. I'm getting healthy again by exercising and eating right and I have hope for the future.

Life is OK and I'm good with OK!