Fun at Disneyland

Fun at Disneyland

Thursday, December 29, 2011

What is IT?

I was just thinking today about how much Autism Spectrum behavior I see in Blake - singing songs and substituting words (seems like he's trying to be annoying, but I don't think he has much control), MAJOR ADHD symptoms, often unable to sit still, doesn't ride a bike well (didn't take off training wheels until age 9), can't coordinate pumping legs on swings, rages, argues incessantly, BUT BUT BUT he is social, even seeks out people, he generally acts appropriately about other kids. He doesn't stand out at all as being different, maybe a bit bossy but nothing major. He doesn't have the flat speech, and the general lack of coordination. He is generally a skilled athlete (except for biking and swinging!)  Am I crazy for thinking it could be Aspergers? He does stim. Both finger movements and constantly throwing things up in the air and catching them. He has a lot of sensory issues, and struggles with fine motor; though I know both are seen in both Bipolar and ASD.

Having an HMO like Kaiser doesn't exactly give me access to the type of cutting edge doctor that will tell the difference. I want them to pay for out of network evaluation, but don't even know where to begin. Ultimately, I'd like OT for sensory seeking and fine motor and PT for the swinging and other movement. Also having some in-home therapy services would be fantastic. I don't even know where to begin to get these type of services.

Saturday, December 24, 2011

Losing Faith in Conventional Medicine

I have made a fairly dramatic decision in Blake's treatment plan. I'm still unsure of the Bipolar Dx, (sometimes, I lean more towards Pdd-nos) but I know for sure that he had severe and dramatic reactions to both the ssri Zoloft and all stimulants. Excepting those reactions, Blake still has many areas that he needs to grow. His ADHD and ODD are still difficult, though the rages and irrational thinking (ie. "I'm going to run away because I'm sick of people telling me what to do" and then *actually* running away) is thankfully gone - those seemed to be more the side effects from the SSRI's and stimulants. So, while, Blake was improving, I felt that the improvement was more from taking the stimulants away in October than from adding these Antipsychotics and Mood stabilizers.

Additionally, as we were upping the dose of Risperdal from 1.5 to 2 mg., poor Blakey peed the bed. That night, he also told me that he had been peeing "just a little tiny bit" in his pants. I felt so sad for him and explained not to worry, that it was the medicine and that we would lower the dose.

That day, I began to read more about treatment of mood disorders with micro-nutrients. I have always been open to alternative treatments, but carry a healthy dose of skepticism. But I read lot about it and the research behind it. And more importantly, I read the stories of people that it had worked for, not just on the company's webpage, but on other unbiased message boards. These nutrients, along with diet, and therapy is really and truly helping a lot of children. It seemed like an easy decision. Try these supplements and phase out the medicines. The conventional treatment will always be there if this alternative treatment doesn't work.

So we started EMPower on Thursday. This is his third day on it, but he is still on his full dose of Lamactil (275 mg) and a slightly lowered dose of the Risperdal (1mg). The support staff at Truehope (The makers of EMpower) want us to give him the Empower daily (along with an amino acid and a probiotic) and then call them when Blake starts to show changes. Apparently, the micro-nutrients make is so that the medicines are better metabolized and cause the meds to have a greater effect. So in a sense, they become over-medicated. That is the point that we will back the meds down.

I want this to work so badly for him. It has an 80-86% success rate, which gives me a lot of hope. I am proud of him for taking all these pills. He takes 2 pills before each meal, plus 5 pills THREE times a day, plus his regular meds, which is a grand total of 25 pills. What a champ.

Sunday, November 27, 2011

Still trying.....

After 10 days with both the Seroquel and the Risperdal, we're not seeing any improvement. The psychiatrist wants us to stop on of the Ap's - I suggesting stopping the Seroquel since that causes him to overeat and to be sleepy. Happily, she agreed. She wants to double the Risperdal dose and spread that out over the day and also keep going up on the Lamictil (the mood stablizer). I guess that's the plan.

I confess I was hoping for something to work a little faster.

James is also is rare form and is almost more exhausting than Blake. With Blake, it's opposition, negativity, hyperactivity (lots of movement, lots of noise, extreme executive functioning issues, etc.). With James, it's emotional over-reactions, whining, frequent spills, accidents, things that need my interventions, high demand for attention and zero impulse control. 

At least his night terrors are better. I had been giving him Clonidine to help with sleep since the Ritalin was making it hard to settle at night. He was having severe night terrors every single night. I have now switched to a 1/2 a Benedral and that seems to do the trick. Helps him get to sleep and he has not had one night terror on it.

We spent the past 5 days in Las Vegas. We went for Thanksgiving vacation and actually had a nice time. I was very hesitant to go, but told myself that we have to try. We can't always stay home because it's easier. All the kids really enjoyed themselves and mom and dad got to have some fun too!

Thursday, November 17, 2011

Short, but oh so SWEET

The peace lasted for about 2 days. On day 3, Blake went back to pretty much the same as before. Only, he was slightly less aggressive. The hyperactivity, the shrieking/screaming/yelling, ignoring us, ODD symptoms, the constant trying to get a reaction from his siblings...all that came back.

We had to cut the Risperdal dose down from the nausea/vomiting, but a week later, when it was to the same dose as before, we still weren't seeing a difference. The Psychiatrist wanted us to keep it at that level and see if it didn't get better. Another week later and it still had not made a difference. I spoke to the Psychiatrist yesterday, and we discussed adding back the Seroquel to see if the combination was what had worked for him for the 2 days of magic. (He was coming off the Seroquel, which he had been on for 10 days without any improvement in symptoms when we started Risperdal).

So now, he's on 2 Anti-Psychotics which scares the crap out of me. But you know what? Blake says those 2 days were the best days of his life and so we will not stop until he finds that peace again. He started on the Seroquel this morning and the school called by 9:30am. He was exhausted. I went and got him and he has been doing fairly well all day. Just sleepy. I know that side effect will go away in a couple of days.

The battle with the school continues. I am happy to have an advocate, but frustrated at the long waiting period (60 days - we still have 40 more) for the IEP, because Blake really needs certain accommodations NOW. It is making him more frustrated to be held to these standards that make it so that his best is still not good enough. The advocate suggested I write a letter to the school and request an SST to get some help for him now. I started by saying that "I recognize that we have an IEP meeting sometime in the near future. However, as it won't be held until after the first of the year, I am requesting an SST to explore and secure accommodations that Blake very much needs in the interim."

And then I listed our suggestions - Minimal homework tasks, extended time to complete tests/quizzes, shortened work if needed, prompts to refocus, prompts to turn in work, prompts to bring required materials home, movement breaks in class, support during group activities (reminders as to how to work in a collaborative team, how to negotiate, compromise, etc.), Support during placing for group activities (Not placing him with classmates who he doesn't work well with), praise and encouragement, and assistance with organization as needed.

I hope this works. On one hand, I guess I understand the need to demonstrate his deficits and lagging skills in his classwork, but on the other hand, I hate for him to be frustrated and to feel like "Why even bother trying? It won't be good enough.". I feel like the teacher should be prompting him to do the above things, like turn in his work, especially when I have personally gone to her and she knows he needs help with things involving executive functioning. The school he is at is so wonderful in so many other ways. There is such a nice community there, lots of caring parents and passionate staff. We are new to the school, so I don't have a really good feel for everyone. But for now, I want to work with them to get what Blake needs. I don't want to jump ship and start yet another school. The school has great stuff; camp outs, hikes, monthly field trips, conflict resolution circle, a huge environmental program, healthy lunch program, and a TON of hands on projects and collaborative groups (hence those needed accommodations for Blake!).

Just one teacher not willing to go out of her way until a piece of paper tells her she must.

Monday, October 31, 2011

Here comes the sun

It's really wonderful to see how much the Risperdal is helping Blake. Since it was causing some nausea and vomiting, we lowered the dose by more than half. I can tell he will need more, since there is some breakthrough of old behaviors and inflexibility, but we have to go slow to avoid the nausea.

But even still, it is amazing to see him...the real him, shining through. He doesn't pick fights, argue incessantly, say no to everything, get super out of control hyper, run and scream through the house, shreik and leap around. There was always a level of chaos in the house and to have the chaos gone...well it's peaceful. Peace. There is peace in my house. It feels so good. I can even feel some of my stress melting away.

Most importantly of all, he is happy. He has said lots of times how great he feels. That is music to my ears. In the end, that is all us parents ever want.

I am trying to just take everything as it comes and not get carried away with pushing him to go too fast. And I am trying to control my mind from running away on me and planning his whole future. :) I am doing a good job so far, I think, of being gracious, loving and full of praise and encouragement. It is pretty easy to do that though! I missed this child I have seen the past three days. It's so good to have him back.

Saturday, October 29, 2011

Keep Calm and Carry On

Things have been bad. Really bad. Blake's mood and irritability went though the roof after we retried Concerta (a stimulant). Dr. (and I) both thought since the Lamactil (a mood stabilizer) was at a therapeutic dose, that perhaps he wouldn't have the negative reactions. Nope, we were wrong. After a wonderful 2 weeks, he became increasingly aggressive and oppositional. We stopped the Concerta, but his mood still has not returned to normal and it's been 5 weeks.

He started at one school, and 3 weeks in, a spot finally became available at James' charter school. This is the school that I had desperately wanted both boys at. It's a K-8 charter focused on "whole child" education. They teach conflict resolution, the staff respect the children, work out alternative solutions and foster community and care for the earth. It seemed perfect.

So, Blake switched schools and right away had issues another student and his friends. He quickly alienated several kids and didn't have any friends. His second week there, we stopped the Concerta. My mom came the next week and though, of course, it was wonderful to see her, it added a level of stress in the house. Blake's mood became increasingly oppositional, He was acting defiant, being sneaky, telling lies, his whole executive functioning deteriorated to the point that was was forgetting everything, even to shut the car door behind him. He was physically attacking James at the slightest provocation. While my mom was visiting, Blake blew up at me because I told him his friend (our next door neighbor) had to go home. We were out in the backyard and he picked up a foam covered plastic bat and came at me, hitting me as hard as he could. It was very violent and all right in front of my mom. I know her heart was breaking seeing it and that made my pain so much deeper.

After that happened, Blake wanted to run away and began packing. We calmed him down and he settled for the night. The next morning, my mom was leaving and I planned on dropping the boys off at school and then taking my mom to the airport. Blake was obsessing on running away still, but now he was making a plan to run away from school with James. I called the school, asked that they keep an extra close eye on the boys and crossed my fingers that the day would be uneventful. I dropped off my mom and we had a very sad and tearful goodbye.

The minute I picked up the boys from school that afternoon, Blake was still obsessing. As soon as we got home, he packed his things and began walking down the street. James went with him. I called the police because there was no way I was going to be able to get them back home safely and keep our 2 year old safe. My husband got home, went and forced the boys into his car and brought them home at the same time the police arrived. The police gave both boys a very stern talking to and talked about the danger on the street. They also called the Children's Crisis Center to come out.

A wonderful therapist came. He has a lot of experience with kids like Blake and said right away that he though we were indeed looking at bipolar and that starting him on an anti-psychotic would be the best course of action. I called Blake's psychiatrist and she agreed and we began Seroquel the following day.

It was shocking how his mood shift continued. He was sliding so far down that I couldn't even see my son though all the chaos. School was a disaster, he was walking out of class without permission and they had to call the office several times to send people out to look for him. The change in the quality of his schoolwork was huge. You could see that there was so much confusion and "static" going on in his head.

At this point, he was 3 weeks at his new school. He had no friends. He was barely getting by.

I called an emergency meeting with his teachers and explained what was going on and how they could help. They seemed reluctant to do anything for him. I didn't have the strength or energy to take on the school. Not with dealing with the daily challenges of having an unstable child and also dealing with the new (and scary medicines). I called an advocate and met with her that week. She is wonderful and I am so glad to have someone in our corner.

The therapist from the children's crisis response team is also visiting us weekly to check on Blake's progress and to help in any way he can. I really like him and feel very fortunate that he has so much knowledge and experience. We tried the Seroquel for two weeks and didn't see any difference, so we just switched to Risperdal three days ago. Unfortunately, that is giving Blake the terrible side effect of vomiting. We are trying to reduce the dose and move up more slowly. The upside is that as of yesterday, we actually saw a pretty dramatic improvement in his mood. I have hope.

Thursday, August 4, 2011

Article on the front page of Yahoo

"Although there have been concerns about over diagnosis of bipolar disorder and other mental problems among children, Blader said that was unlikely to be hiking the rates since hospitalizations are based on whether or not people are considered a danger to themselves or others, not psychiatric labels."

But here is the hitch - More Dx's means more prescribed meds and those meds (especially Stimulants and SSRI's that are being given to an increasing number of pre-pubescent children) have side effects that are frequently landing these kids in the psych hospitals.

Tuesday, June 21, 2011

Neuro-Psych Feedback Meeting

The long awaited feedback meeting arrived today. Blake has been to UCLA three times this month for very comprehensive neuro-psych testing and my husband and I met with the doctors today to discuss the results and their recommendations.

The Doctor said first that he is a very bright child and that educationally speaking, they did not see any concerns, other than his fine motor control (they recommended OT for that) and his ADHD. They saw his ADHD symptoms (lack of sustained focus, need for movement, impulsivity) and agreed that he had ADHD.

Primarily, they believe he has a lot of anxiety and some depression. They do not believe he has bipolar mainly because he does not experience the sleep disturbances and the grandiosity. They recommended cognitive behavior therapy to help him reframe his thinking and said that they believed his anxiety triggered a lot of the opposition.

They recommended that Blake continue taking the mood stabilizer (Lamactil) but agreed with me, that it was probably best to just do the Lamactil and add the Abilify later if needed once the Lamactil was at a therapeutic dose. They also recommended that we consider medicine for his adhd once his mood was stabilized. They agreed that Blake having the in-home therapy would very beneficial to both him and to our family. Lastly, the main psychologist told us that she felt very optimistic about Blake's future.

I left feeling good about everything, but also a little confused. My head has been swimming with more and more questions as I absorb all of the information. The doctors will complete the written report and mail it to me along with their specific suggestions for the cognitive behavior therapy so that we can share that with the in-home therapist.

I have been reading the book, "Lost at School" by Dr. Ross Green. Though I had read his most popular book, "The Explosive Child" years ago, This more recent book of his is truly revolutionary. His ideas about discipline and behavior are so dramatically different, but make perfect sense.

I was struck with many things, but one thing, especially, stands out to me from the book - "Diagnosis" isn't really all that important, it's the children's lagging skills that need our focus. And right now, that makes more sense then ever. It's a good feeling to be able to have some clear goals for Blake (based on his lagging skills) and to be working with a therapist to reach those goals.

Good day. Hope springs enternal, right?

Thursday, June 9, 2011

Hanging in there

Things are going fairly smoothly lately. No major rages in about 2 weeks. Blake is still really obsessing on Pokemon (on his Nintendo DS), but has done well with me setting a limit of 2-1/2 hrs./day. Which even looking at that number, seems like WAY too much. But the thing is, I can see that it helps him cope and channel excess energy, so I compromise.

Blake has done his first day of testing at UCLA and goes in on Monday the 13th for the other half. He is being a really good sport about it and we've had fun driving the 405 in bumper to bumper traffic. We actually have! I put on some music, we put the windows down and cruise (at 15 mph, but still!). It's been nice having it be just he and I. We don't get to do that enough. We were talking about the students at UCLA and Blake informed me that going to UCLA was his dream. He could do it too. I know he could. He has his challenges, and they can be huge at times, but he has so many amazing gifts as well. I pray that his challenges don't hold him back from his dreams and most days, I feel optimistic about his future.

Blake had a major accomplishment today. At a school performance, (with lots of students and parents watching) Blake played three songs on his trombone with the school's elementary band - made up of 6 kids. He did so well! He says he wasn't even nervous, which is surprising. He has had issues in the past with performing in front of a lot of people. Though, I believe that was when he was on the stimulants and they all gave him all sorts of anxiety. Anyhow, today he did so great and he also smiled a lot which is the best thing in the world to see.

James has his first OT therapy tomorrow. I hope she is good at motivating resistant kids because when James gets frustrated, he is D-O-N-E and I've found that if I push, he gets very angry and emotional. So, fingers crossed she's a good one!

I am enjoying the last days of having the boys in school. Even though I am busy running to and from near daily appointments of various doctors and therapists, it's still manageable with only one of the boys and the baby. But when it's the 3 of them, the boys get each other going, get loud, get rambunctious and silly, bug the baby, fight with one another....

Oh summer. Must you come so soon?

Saturday, May 28, 2011

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....
(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 -

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!!

Sunday, May 22, 2011

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.

Tuesday, May 17, 2011

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, 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.

Sunday, May 8, 2011

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.

Wednesday, April 20, 2011

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 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!

Saturday, April 16, 2011

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:

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!!

Wednesday, February 16, 2011

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.

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.  

Wednesday, February 2, 2011

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!

Sunday, January 16, 2011

I quit

I quit. I am done. Mercy. Hello? Hello? I am even too tired to even go into details, but the past 2 days have been more difficult than anything in the past year. Ready to tag the next team and there is no one waiting to take my place. More soon....

Monday, January 10, 2011

Doing Better!

I've been a bit negligent about keeping up with my blog. Things here are really going well. Blake is doing great both at home at at school. He is totally off the stimulants and just on the Intuniv and I am so pleased with how things have been going.

It's still not perfect, of course, he is still often oppositional and negative, but it's really so much better. He will do something he doesn't w ant to do without too much of a fight. He doesn't complain as much. He is exponentially better than he was just a month ago.

Having Blake happier has had a beautiful trickle down effect on the whole family. We feel more relaxed and have more fun with him, so we want to spend time with him. Just last night my husband took Blake out to "Phillipe's", a restaurant famous for it's sandwiches and featured on "Man Vs. Food" (One of Blake's favorite TV shows). Then they went to a Laker's game. My husband said they had an incredible time and Blake was so nice to be with the whole night.

I have cancelled the behaviorist for now. It's outrageously expensive and not really needed at this time. I am very hopeful that things will continue to get better.....

What we really need to do at this point, is to spend some time and energy on our younger son. He started stimulants in October, but I am still not entirely happy with his results. His focus is better, the hyperactivity is better, but his listening is not at all better, and his emotional reactions are worse. I know some of it may be the middle child thing, especially with his older brother taking up so much of us in the past. he is also only 6, so it's hard to say how much of this might be a maturity thing too.....