How far we've come

When I think of the boy Blake used to be, I marvel at the young man that he is today.

Both boys now go to a small, private, regular-ed school. I moved them from the charter school over Winter Break. They have adjusted marvelously. Blake is in 7th grade and has several new friends, is fitting in well, and is so happy. He hasn't had one issue with behavior at school and is even thrilled to be joining the school's volleyball team. Academically, with the smaller class sizes, increased accountability and structure and great teachers, he is thriving. He cares and he tries so much harder than he used to. It great to see because he's really a very smart kid. He still has difficulty with executive function, and is losing/forgetting things daily. That's frustrating for all of us! But I have tried to set everything up for success. I am strict about homework time and also go through his binder with him weekly. His wonderful science teacher assures me it's a common problem among many middle school boys!

James went from 33 kids in his charter school class to 14 in the private school. We also moved him down a grade, since he would not have been able to be successful in the fourth grade at the private school. It's academically a bit tougher than the public schools as a whole and James was already very behind for his grade level. So, I think is was a smart move. He has a new best friend there, gets tutoring twice a week from his teacher and is learning so much more. Its good to see. But James still really struggles with the sensory seeking, and his ADHD still. We're working on seeing if adding Intuniv with the stimulant is helpful. Its so bad that 95% of the time, you can't have a logical back and forth conversation. He doesn't have a lot of interests, like sports (like Blake loves). He quit swimming because it was too cold in the Winter and now he doesn't want to go back. I just worry about him because there's so many things he does that are a struggle. He's not really great at anything. And with his lack of impulse control and his often huge energy, he bugs people. He bugs me and I love the heck out of him. So he's not really talented at a sport, or school and he can be annoying. And I know he knows that. Even if his big brother didn't rub it in his face, he'd still know it. And it kills me to see. I worry about him a lot most days. I am hoping this move in school will let him feel more confident and I am still looking for the thing that will light his eyes. We're trying surf camp this summer. :)

The baby is now 4-1/2 years old and is pretty darn amazing. She has shwon me what it's like to have a "typical" child and renewed my confidance in the parenting abilities of me and my husband. She fun and happy and tough. She will start kindergarten next year at the same school. It's K-8th, so yay!

An Update...A long time coming

I know it's been a long time since my last post, but I did want to update and share how everybody's doing. We are all well. Things are still certainly a daily challenge with both boys and now an often demanding three year old, but we have a LOT of good times together and I am seeing real growth in both Blake and James.

Unbelievably, we are still uncertain of Blake's (age 11) exact diagnosis. But for now, there have been no more aggressive actions and he is less oppositional. Not even close to agreeable, but still, he's better than before. We having just started seeing an amazing child psychologist. He came highly recommended by both a well respected friend with a son with bipolar and also by our school advocate. He is not a Kaiser Dr., but it's obvious to me by now that there are no competent doctors within the Kaiser system as it is currently set-up. Dr. S is very knowledgeable about kiddos like mine and at our intake appointment, he assured us that Blake is like 90% of the kids he sees. Dr. S will be looking at all of Blake's previous testing results and see what he finds out. I am looking forward to working with him and for him to work with Blake. He also knows a top child psychiatrist in the area that can look at both boys and their meds and make recommendations to Kaiser. That would be a dream!

James, age 8,  is currently on stimulants for his ADHD. He still struggles with emotional overreactions and severe impulsivity, but he's doing OK this year. His 3rd grade teacher is really good with him and provides a lot of structure and clear expectations with a lot of love. He does well with that. He has found a new sport, swimming, and really loves it. Its great to see him getting better and for him to have something all his own like that.

Both boys are still at their current charter school. It's a good fit, in many ways, but I am also worried that Blake isn't getting the real help he needs to get better at writing, organization, reading comprehension and executive function issues. They do work with kids when they have conflict and I know they have great love and respect for their students, but I'm not sure the structure of the school is right for Blake. (Or for James in the long run either). But I'm OK with staying this year and exploring my options for next year. I want to also get the opinion of Dr. S on that.

So, all in all, we're hanging in there. We still have daily challenges, but also have more faith than ever that we are all going to be OK in life.

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.

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.

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!

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.

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.