Sunday, February 21, 2010

Mix and Match

"Life is like a box of chocolates, you just never know what you're going to get."

A dorky quote, yes I realize. But I find myself thinking this often lately. The last couple weeks have held some interesting events.

I was called by a recruiter I used to work with regarding a temporary position with a pharmaceutical company that manufactures CNS drugs. He said they had come to the end of their list of possible candidates to submit when he came across my CV. He had hoped I'd had a change in heart on wanting to 'semi retire' my career. Now, I've been out of work for almost a year and previous to that, I worked strictly from home for another pharma company for 3.5 years. It had always been my dream to stay home with my kiddos and we were finally able to handle it financially. It's been amazing to say the least. I'll be forever grateful for the time I've been able to spend with each of them while they were infants/babies/toddlers. I really had no intention of returning to work before this call. I was even tossing around the idea of going back to school for a Master's in counseling. But then this call came and something really struck me about the job and the company. How could this not be fate? To think that I could be a part of the research that goes into the drugs that have saved my daughter's sanity over the last few years is beyond my wildest dreams. And to boot, we have a fantastic nanny waiting in the wings who my children know and truly love. I feel pretty lucky this has fallen into my lap.
I interview tomorrow afternoon and while it will be a huge and initially heartbreaking adjustment, I feel as though this is some type of calling I must answer. It's just meant to be.

In Ava news, she's developed a new odd behavior pattern. She's been having BM accidents at school! My poor girl. She refuses to change into the extra underwear she has tucked away in her backpack and so has dirty underwear for a few hours - until she arrives home from school. We've chatted with the therapist about this and she's not really sure where it's all coming from - perhaps a control issue? Ava claims she is afraid to ask her teacher (whom we love dearly and is a sweetheart and beyond understanding always) to go to the restroom as she feels as though she asks too often. Ava is such a perfectionist - it just kills her to imagine that someone is disappointed in her or is thinking she's not perfect. I emailed her teacher to let her know what was going on and she and Ava have developed a code phrase that Ava can tell her so she knows Ava must go to the bathroom right away without Ava having to blurt out "I have to poop, Mrs. S!" Since this has happen, Ava's not had an accident but I feel like we're just on borrowed time here. On one hand, I'm of course heartbroken for her and on the other hand I'm so frustrated with her because I cannot understand - I cannot fathom what is holding her back from just going to the bathroom when needed?! Wouldn't that be worth it so you don't have to feel horrible with poopy underwear? Ugh, my poor girl and this horrendous illness. I know behavioral patterns such as this will just continue to evolve as months and years pass, but it is beyond exhausting as a parent to constantly find it within yourself to trudge through it all. There is no option to throw up your hands and say, "OK! I give up! I can't figure this out, I have no idea what the hell is going on! I can't fix it so just forget it, I give up, can't do it, you try now, ok?" And all the while, the previous is what drives me to continue to fight until she feels good and is stable. I made her a promise about a year ago, that I would never give up on this - I would never ever ever stop fighting for her to feel better. That she should always know that no matter what happens, I'll be here, right next to her, fighting this disorder along with her as long as she needed me. I realize at 5 years old that may not mean a whole lot to her, but I hope at 25, at 35, at 45 she looks back and realizes I never left her side.

On another note - I wonder if anyone has seen much of the publicity surrounding the upcoming revisions for the DSM? There is obviously a huge need to address Early Onset BP as there is nothing of its type in the current DSM IV. Studies are showing that Early Onset BP is actually grossly overly diagnosed and that perhaps a more suitable diagnosis would be "Temper Dysregulation Disorder with Dysphoria". It's been found that children that were incorrectly diagnosed with BP actually end up as depressed adults, NOT BP adults. Take a look for yourself - very interesting stuff: Be sure to click on the tabs just under the words Temper Dysregulation Disorder with Dysphoria on the page for lots more detail on the rationale behind this disorder's addition to the DSM. Of course, I can't help but wonder where Ava fits into all of this. I look forward to discussing it with her pdoc soon. As horrible as it may sound, I'd be thrilled if my baby girl ended up with ONLY depression as an adult versus Bipolar Disorder. Thrilled that that would be all she had to deal with.

Ava's rages continue about once a week despite increases in meds. My girl finds it completely IMPOSSIBLE to play alone. Or really to play at all. It seems as though it is impossible for her to concentrate or keep her mind on anything at all. She used to love tv, her DS, the computer - it was worthy of a tantrum to get her off any one of those things but in the last several months she find virtually NO interest in anything. She's taken to following my husband and I around ALLLLLLLL day long (on non school days and after school). Its heartbreaking and maddening all at the same time. I watch other children her age an younger who play quietly and contently by themselves and I'm in awe. Ava has virtually NEVER been able to do this. She relies on someone else always to entertain her or spark her interest, imagination, motivation for everything. She is completely debilitated because of it. We work on this with her therapist as well but feel like we're really getting no where with it. At the same time, I worry it is a side effect of her Abilify as it seems as though it really became a huge problem as she began taking it. Yet another issue to discuss at her next pdoc appointment.

And so it goes - never a straight shoot sort of road in our house - always twisting and turning unexpectedly. I say this all the while teasing my husband often when he says this sort of thing. He honestly believes that we live a much harder life than compared to most. I question him with - what constitutes ours as hard as compared to the next family? Who is to say that we endure more than others? You cannot compare apples to oranges. Life is not easy and anyone who tells you it is - is lying!

I spoke to a clairvoyant recently who told me that some believe that unborn children choose their parents. She told me that Ava had specifically chosen us based on her issues in this life and our ability to handle them. On the days I want to give up and wave my white flag, I think of this and know in my heart that it is true. And I reaffirm to myself, what I have promised Ava -- I will not give up, I will not give up, I will not give up . . .

Tuesday, February 2, 2010

Ava's med history

I thought it would be helpful for other parents to see Ava's med history. I wrote below in response to a fellow blogger but thought others may benefit from it as I always learn so much in hearing the details of other kiddos' stories and histories. I hope this leads someone else in the right direction - even if brief.

The pdoc we've been seeing for 2+ years now has just done trial and error type of prescribing for Ava. She and I really really work together as far as symptoms and theories as to what psychological issue is causing which behavior. Ava takes the following:

25 mg Zoloft, in the AM
5 mg Abilify, in the AM
27 mg Concerta, in the AM
5 mg Abilify as soon as she walks in the door from school at 4pm

Just to give you an idea of how we've figured out her latest med cocktail, here is a very brief history of Ava's meds throughout the last couple years of trial and error: Ava was first on Lamictal and we noticed slight improvements regarding her mood/depression/rages but it did not touch what seemed to be anxiety issues. We up'd the Lamictal slowly and saw no improvements. Then she began to have the rash! We stopped dosing, waited 2 weeks (to clear all out of her system) and tried Risperidol. Nada improvements or negative behavior from that - nothing. I researched and read a ton that said that Lamictal could be reintroduced with 85% rate of success without the rash. Dr. Lee agreed since we did see slight improvements so we restarted Ava on Lamictal - very, very slowly titrated up. Again, slight improvements but nothing significant. I suggested that Ava may need something for anxiety so we tried Prozac initially. This increased her rage and irritability tenfold. Stopped dosing. Waited 2 weeks. Started Zoloft and saw GREAT improvements as far as anxiety issues/sensory sensitivity issues. Her rages still continued and I felt like Lamictal wasn't really doing anything significant. We switched to Abilify as my mom is on this (BP Type II) and has had amazing results. Ava started with 5 mg in the morning. We saw improvements again but nothing super significant. With all of her meds we saw significant improvements for about 3-4 days and then they all sort of 'level out' for lack of a better term and she then will show just average improvements, meaning rages still continue but not for hours and/or not daily. I REALLY have felt since the beginning that Ava has shown signs of ADD/ADHD but was told over and over that BP can present as that but once the BP is pretty much under control, those ADHD symptoms disappear. But Ava's did not. I really stressed this to her pdoc. The big issue was that Ava showed no signs of ADD/ADHD in school. But Ava is a complete ANGEL at school, always. Her pdoc and I decided to go for it with the stimulant - if it wasn't what she needed, then we'd know immediately. Ava took her first dose and about an hour later, fell asleep while reading a book quietly on the couch. WE WERE FLOORED! It is true that stimulants can cause issues for those with BP, as can antidepressants (like Zoloft) but it really depends on the individual. And Ava is a crazy complex case. The tweaking and trial and error we've done will probably go on forever but I'm willing to do whatever it takes. We did notice a significant improvement in Ava's behavior overall upon starting the Concerta. There was suddenly a peace within her - the restlessness, jump-out-of-her-skin feeling you could feel just being around her was gone. However, we noticed HUGE flare ups about 4pm (hence my post before this last one!!!). The pdoc suspects this is because this is about the time the Concerta wears off and so we added 5 mgs of Abilify to balance out the mood swing there in the afternoon. This 4pm dose has done WONDERS. Before this dose we were having HUGE HUGE meltdowns for hours every day for about 2.5 weeks. My theory (take it with a grain of salt!!) with meds is that you treat the symptoms despite what literature says. We are all individuals and so things effect us all differently. My background is actually in research so I'm a huge advocate of it but when it boils down to treating MY child, I'll do what I feel that little voice inside my head is telling me to do - my intuition rules. And if one drug doesn't work, rest assured there are many more in that category that may, so we just keep trying. It's taken forever and I know that with growth spurts and puberty around the corner it will be a never ending battle but I don't care. I'll keep up the fight. Go with your gut, above all else. If your pdoc disagrees, tell he/she why you feel the way you do, ask for a trial period, find another doc, don't give up.

The psycho therapy sessions for Ava have been beyond wonderful. The part that Ellen stressed, more than anything is the importance of Ava knowing that she is NOT a 'bad girl'. She's a wonderful little girl who has a mood disorder. And as Elle tells her, "you are like a great big yummy pie. you have all these pieces that make up the pie and one piece is your mood disorder but that doesn't ruin the rest of the pie, it just makes it you." She stresses her strong characteristics above all else which helps with Ava's depression and anxiety and gives her the boost she needs to fight her BP. I wish we could have started earlier but no one would see her at age 4! And perhaps that would have been too early but I've always figured, the earlier she is educated and introduced to something she'll live with for the rest of her life, the more power she'll have to fight it!

Monday, February 1, 2010

Tiptoeing on egg shells

My last post, I enjoy saying, is a distant memory now. And as I type, I curse myself in fear that I will jinx our current smooth sailing. Ava's extra bump of Concerta and the change in timing for her second dose of Abilify in the afternoon rather than evening seem to have kicked in for her. We are so grateful.

We had a second session with Ellen, Ava's own psychotherapist. Ava and I talked with her together and then Ava had some alone time with her and then we chatted briefly again the three of us. Wow. What support and goodness comes out of those sessions. Ellen stressed to her the importance of distraction as we've realized, much like our 3 year old when she begins an age-appropriate tantrum, Ava can be distracted out of her rages. The timing, however, must be exact and is becoming a learned art by her father and I. So, we're still treading thin ice many many times a day but Ava knows that her rage is sometimes a choice and that often she IS in control. Ellen also stressed to Ava what a wonderful mother she has. Sounds silly to me to type that out but her saying that brought me to tears. I try so hard and so often feel so beaten down by Ava's behavior that it felt like a boost to the clouds to know that she and Ava had talked about this and to see a twinkle of acknowledgement in Ava's eyes as Ellen elaborated on that part of their conversation. I smiled through my tears and thanked Ellen. I had no idea how much I needed to hear that. My husband can tell Ava that all day long but it means nothing until someone outside the home, outside our close circle of family and friends, someone Ava respects and enjoys, says it to her.

Ironically enough, her positive behavior has coinsided with Chiropractic care we have just begun for her. I met a fellow mom, Amy, who is a friend of a friend. Amy's little boy has Asperger's and when I asked if he was medicated for his bouts of irritablity and rage Amy told me how very close they were but his teacher suggested a Pediatric Chiropractor in our area. Amy gave me his card and I must say that I am amazed by the Chiropractic theory on mood disorders. Ava is a textbook case as she was Frank Breech my entire pregnancy, was colicky beyond colicky until about age 4.5 months. Theory is that the vertebrae are not encasing the spinal column properly (due to her in-utero position and a 'traumatic birth' as a c-section baby) so nerves are misfiring, not firing, firing too much, too little, etc etc etc. When looking at xrays with Dr. Tony of Ava's vertebrae - it was very obvious she was completely out of alignment - her very top vertebrae, C1, was not aligned with the rest of her backbone. And theory is that this causes serious issues with mood and emotion among a long list of other issues. She's had 3 adjustments and who knows what the future holds for her there - but Dr. Tony's hope is that she'll be able to kick all meds by the end of the summer. What a dream. I asked him - "if it's this easy, why doesn't . . . " and he finished my sentence, "I know. Why doesn't everyone with issues like this come in and get adjusted?" YES! He agreed and told me that it's because the majority does not believe in Chiropractic care on our side of the world. I'd have to agree and I may be part of that majority but I'll take a chance on anything at this point to help my child. Anything.

I feel amazingly blessed today to have the support system we do. My husband was laid off due to budget cuts from a fabulous company the day before Halloween. There is often talk of relocating but we push it away as we both know what we have here in regards to doctors, therapists, and friends that cannot be replaced. I have faith that we'll be able to stay in the area and peace will continue to surround us. After our last couples therapy session, I have really considered returning to school for my Master's in Counseling. I have always hated the fact that I didn't continue with my degree in Psychology and imagine I'd have much to give others as far as experience with mental illness.

I'll take today and the peace we have this moment. Hold onto it and hope it spreads to others I know I struggling with this disorder. If times are rough for you, hold onto hope and know that 'this too shall pass.'