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.'

8 comments:

  1. Erin-I am so happy for you all. I totally understand the feeling of tiptoeing on eggshells. We feel we do that all of the time around here.
    I have a question for you-from what I have read they say that a stimulant has negative effects on bp kids so I am curious is that what you have heard and if so, why do they give Ava concerta? I feel Kenzie needs what the stimulant can do for her but it also causes more mood problems for her. (see my newest post) So I am wondering did they figure out that with Ava or does the stimulant not cause any problems for her? I would love to know how if so.
    Also, I love the part about the therapist helping Ava realize that her rages are a choice. That is so hard to balance because we know that they are sick but they do need to learn how to deal with it. I can't imagine how hard that is at 7 or even 13. But I do believe with the right help they can learn coping skills. We need to find a good therapist again to help Kenzie figure this out too.

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  2. Amy - so glad you wrote. 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!!!).

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  3. 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 therapist 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!

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  4. Erin-Wow-you did write me a book but I am very thankful. I have learned more through my blog than I have in the last four years. Ava sounds very similar to Kenzie-she has anxiety and ADHD too. Concerta worked for Kenzie too for awhile-about one year and then it seem to wear off and not work anymore or maybe that was the bipolar and anxiety coming out that we did not know about then. That was when we tried ambilify first and it caused her to be very sick to her stomach-to the point of not wanting to get out of bed and not eating at all. We tried it for a week and then she just could not handle that medicine. That was about two years ago. I wonder if she could try it again. Then the doctor switched her to vyvanse and we saw a difference still not completely different but better. Then about one year later is when the rages started-she was on vyvanse and zoloft. When they added seroquel to the mix we saw a calm and even happy loving child that I know she wants to be. We got that for about one month-6 weeks. Of course all of this is during her puberty. they say she is at the hardest age to medicate. It is not fair that it is so hard to keep these kids stable and boy, does the medication have to be constantly watched. I so appreciate you sharing all of your stuff with me.

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  5. oh yeah-The school tells us Kenzie is an angel at school too. We really struggle with that-how can they hold it all together for everybody else and then fall apart so on us. Again, this disease is so complicated and unfair. But it is sure nice to know that I am not alone. Thanks, Amy

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  6. Amy - just read your most recent post and am glad you're doing what you feel is best. Is Kenzie happy to be back on the Vyvanse?

    I've heard puberty is the hardest time to medicate. Between growth spurts and hormones there's so much going on in those little bodies - adding pharmaceuticals can only make things more complex and confusing for everyone involved!

    Kenz and Ava do sound alike as far as a plateau they reach once starting a new med. I wonder if some of the meds you've had success with, could be up'd in hopes of seeing the same positive results the initial dose(s) gave? I also wonder if you've tried Lamictal with her? I've heard over and over a high success rate with this. I also should tell you that with each med we start Ava on, I make sure we start with THE lowest dose possible. I've often asked to pop pills in half to go even less than the lowest dose made. Abilify (her first dose was 2.5mgs -we snapped a 5mgs in half) was difficult for Ava for about 2 days as well - had to be sure she had a fully tummy and it made her very very sleepy/drowsy but it subsided after a couple days. We waited about 2 weeks and then went up to a full 5mgs. And then further up from there.

    I'm so glad we've connected and please know, you are not alone. As much as you don't wish these experiences on anyone - it means to much to find those who have been through the same and understand, I agree!

    Erin

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  7. As comforting as it is to know I am not alone, it doesn't change the fact that my 21 year old daughter, who was finally diagnosed, last year, makes my life a living hell. I have some Everything for my daughter, I have lost relationships over her, fought with family members for her and yet I am still abused by her almost daily. She has lost almost all of friends from her youth.. They are simply tired of her BS. She goes from one bad relationship to another (usually someone who doesn't work) and then I have to support him as well as her. My fiance and I have moved her 12 times in the last year. As matter of fact she continues to ask me for money, food and clothes. She recently borrowed a friends car at a party and drove home drunk and had an accident, a very bad accident. And now I have to sit in court every two weeks with her listening to her complain about how she has better things to do and she can't stand sitting there bored. I have repeatedly. Asked her to dress appropriately and address the judge with respect. She has done neither. I cannot pay for a lawyer because she has exhausted my money. Did I mention I am disabled from a car accident two years ago and receive disability, so I have little money to begin with. I am in pain most days and it difficult to do anything and yet I run around to give her a ride or take her shopping and she will treat me like crap all the time. She called me 25 times in a row when I wouldn't answer the phone after she called me an idiot and then said she was screaming and crying over the phone ( so that people could hear her) that I am so horrible and mean. ..a stranger walked up to her and gave her 20 dollars and said go help herself. You don't need her ( which she threw in my face) like see" even other people know how mean you are". It infuriates me. So she just called me after all of the chaos this morning and said " can you come get me so I can do laundry at your house" I just said no, after your behavior today I am not doing anything. And I get the threat that I won't see her until further notice. I am so tired. I cannot deal with her behavior anymore. She refuses to take her meds or go for treatment. So this cycle continues.

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  8. Just found your blog and can't believe the similarities we share. I am curious as to where in Illinois you live? I know Dr. Tony is in Crystal Lake (I have not taken my son to him yet), so I'm hoping b you live near there. I live in Woodstock. I'm also curious as to where your psychotherapist is located? I've been searching for one in the area and have had little luck. If you'd prefer to email me you can reach me at hkkeller@d47.org....hope to hear back from you!

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