Fa la la la la

Yesterday, we had an "emergency" pdoc appointment. Christmas season has been rough on Dallas, and on us. So many PTSD triggers, over-stimulation, anticipation and change of routine for his little body and mind to handle, so he's had several bad episodes. His mania cycle has finally wound down some after a solid month (gah!), and now it's swinging to the other side into depression (with some suicidal ideation again). This is his pattern -- mania, depression then stable for a few months. His cycles always seem to run like that.

The 100 mg. Lamictal med increase has helped some, but not as well as we had hoped. His PT had previously noted that though his mania seems more controlled, his inattention and lack of focus is a real problem. At home, he is still explosive and oppositional and unfocused, and a bit...ummm...giddy..

In response to the Lamictal med increase not working as well as we'd hoped, his pdoc prescribed a newly marketed and FDA-approved medication for ADHD/bipolar called Intuniv. We begin a titration pack today, in addition to his Lamictal in hopes that this med cocktail will be the magic bullet that gets and keeps him stable. I hate to send him off to camp, where no one knows his issues or can monitor his moods/behavior, but praying it will all go well.

We enrolled him in sports camp for the Christmas break to help him get out his excess energy, still follow a "get up, dressed, and go" routine, and give me some much-needed quiet time alone. He seems to love camp so far. I told my husband I'd go without any gifts at all, if I had to, just to pay for the camp. It's that worth it. He came home happy, had a good therapy session afterwards, and went to bed happy, so that is wonderful!! Physical activity and sports -- strenuous and prolonged, really seems to help calm him.

Knowing me, I probably won't post another entry until after Christmas, so have a great holiday, and if you are dealing with challenges in your own family, I wish you PEACE, JOY and STABILITY. :-)

Merry Christmas!

Welcome to Bipolar World

I was a basket case giving him the first dose yesterday, and had to have moral support (a friend on phone, and support group online) to even pop open the blister pack and put it in his mouth. I cannot believe that a person with such pharmaphobia (is that a real word?) like me has a child who has to do this med experimenting thing! My stomach was in knots and I couldn't eat all day. I am so afraid of doing something that is going to harm him, in order to help him. :-(

It is a titiration dose of 25 mg for two weeks, and then 50 for two weeks, up to 100 mg of Lamictal (anti-seizure med off label for bp in children) we are trying, so shouldn't have noticed much affect at all, but it was there within about 3 hours. The affect I noticed was somewhat labored/deliberate speech, and him wringing and rolling his hands absent-mindedly a few times when he was watching TV, and lots of crazy giddiness otherwise. NO aggression or opposition or conflicts with anyone or depression/sadness/anger, but lots of silliness and some immature behavior that looked nearly manic to me - just without the anger and agression. More like an immature 7 year old, which is strange as Dallas normally comes across as a 17 year old in a 7 year old body most of the time. He did tell me that the medication made him feel "fantastic" and "the best I've ever felt". But he was almost drunk-acting but no slurring of speech or balance being off. His memory was not working well either, but being disciplined was met with a normal response from him, rather than opposition. The main thing we need to watch out for on this med is suicidal ideation or actions, mania, ticks, and a rash that can sometimes be fatal in rare cases. Ugh...

Can I say again how much I hate giving him meds? I hope this one, and a new rx for possibly Strattera (non-stimulant) by the time school starts will be all he needs to feel normal and function normally. Last night, he slept through the entire night without waking, and is still asleep now at 9:40, but didn't go down until almost 11 pm.

We likely won't be able to see an endo for months for the newly-discovered hypothyroid issue. It's appalling, but his endo needs to be a pediatric specialist, and there are two in our entire region, and both backed up for up to a year with appointments.

Today's a brand new day. We'll see how it goes...

Season of change

It's been over a month since I last blogged, and it's an overwhelming task to try and play catch up, but I'll do my best.

The pressure of school is over, and boy what a change in my son from just a month ago! His behavior has begun to look "normal" and he is happy most of the time. It may be just a coincidence and timing of his mood cycles, but my instinct tells me it's more than that. It's as if he's turned an emotional corner of sorts. He is after all now 7 years old, and "mature" as he likes to say.

We celebrated his 7th birthday on June 20th with a bowling party with 8 of his best friends and our extended family, and even a few neighbors joined in. He made a special request that I bake him a "Florida Gators bowling cake with a bowling ball on top". Do what? I am most definitely NOT a baker by any stretch of the imagination, but I did my best. It took me 5 hours. Did I mention I am not a cake baker?

He loved it and that's what mattered.




Dallas is also swimming like a fish this year, and has begun trying to dive... err.. belly flop. He no longer has any fear of the water. We may have another Michael Phelps on on hands!



However, the best part and biggest change is that he can just chill out and enjoy the summer for the carefree time is is supposed to be. Once, where without any structure, he completely fell apart, he is now able to thrive and be flexible. And also relax a bit...



Fourth of July, however, was too exciting for words. Dallas was all about the fireworks. Obsessed by fireworks. My husband tells me it's a "boy thing", and that we aren't raising a future pyromaniac. I guess he'd know, since he spent way too much money of fireworks himself, and it was like watching TWO excited boys, instead of one.




One of the biggest changes however, is that we took him completely off his ADHD medication. It wasn't without worrying about how he'd cope (and us as well) but he's done GREAT. His attention span isn't too great, and we often have to repeat ourselves 3 or 4 times, but his behavior has been manageble, and he's not been so impulsive as to be a danger to himself. Well, not so far anyway.

The other really big change, is that he's begun to cry when his feelings get hurt or he's sad. It sounds like such a simple, normal thing that kids do (and most parents try to prevent the tears!), but for Dallas, it's a huge, positive thing. At first, we were very concerned that he was going into a deep depression cycle and the new-found crying was a warning flag for that. But as time has gone by, we realize that he's instead begun to be able to identify and express appropriate emotions that match his feelings... and feel safe enough to CRY. Understanding his own feelings and emotions has been a 3 year struggle for him, but we do believe he's finally turned a corner. He never even cried about being taken into foster care or losing the people he loved. He confused "mad" with "sad" and it's been a difficult, often volatile journey for him, and for us.

We are so incredibly proud of how far our son has come on the road to healing!