Monday, February 28, 2011

Supplements

When Tortuga first came home 4 years ago he was on a serious drug cocktail. He had meds for everything--getting up, sleeping, pooping, mood, attention, aggression. Just prior to his leaving the RTC to come home I insisted that his medications be reduced to those deemed essential for his health and well-being and that he be taken off anti-psychotic medications because they were given to him without court approval (required in our state at the time.) He came home taking 7 different meds at 5 different times of the day with an incredible array of side effects. Based on some new school transition issues and delays we somehow managed to "miss" several doses of meds that were required during the school day. By the time that was sorted out we had effectively reduced his meds to 4 and to 3 different times of the day AND he was functioning better in terms of side effects and staying awake at appropriate times. A few of his drugs literally knocked him out mid-sentence or mid-meal or minimally reduced him to a semi-catatonic state. I spent countless hours researching the various meds, side effects, alternatives, and options. As I reviewed his history I also realized that he had been on some of his meds since he was 3 and a half. After a semi-productive meeting with his psychiatrist where we came clean about the meds we had "inadvertently" weaned him off of and his role in not providing the appropriate paperwork to the school on time we agreed to a "trial" period in which we would wean him off of ALL of his meds and re-assess what was going on with Tortuga. Within several months we had a drug free kid who was emotionally bouncing off the walls. He could express almost no emotions beyond being overly happy/excited and sudden anger/rage at the slightest things. (Bipolar was one of 15 possible diagnoses.)  He didn't show other emotions and even though they were present he didn't recognize them, his facial expressions didn't match them, and they easily overwhelmed him and reduced him to a raging mess.

It was so difficult to figure out where to begin and we second-guessed our choices regarding medications on a regular basis. However we were also convinced that we needed to figure out what his "real" issues were before we started treating symptoms with drugs. This was NOT because we were particularly anti-meds but because we just felt like his 7 1/2 year old body and brain needed a break and we needed to see what was underneath all of those drugs. We also were informed by the experiences C. had post a significant brain injury in which she constantly underwent med changes that severely affected her mood, behavior, personality and well-being. Where problems had never existed before, she suddenly had diagnoses for all types of psychological issues so we knew much of it had to do with her brain injury (both physical and emotional).  I started researching diet and herbal supplements in hopes of giving him the best possible chance to heal his heart and body.

We knew for sure that Tortuga had PTSD--his behavior screamed PTSD. We also were pretty confident that he either had ODD and serious attachment issues and some form of RAD (RAD was his diagnosis.) Taking him off all the meds was hard. Very hard. Yet keeping him on the meds was also hard.  We had been pretty successful with Corazon's poop-withholding issues using an herb ("Cascara Sagrada") that my parents had used occasionally when I was growing up (as a tea not a pill).  We had tried everything with her and had resorted to suppositories on a semi-regular basis until we started using this herb. It worked well for her. He was on two different meds for this issue although his problem was compounded by the other medication he was taking. W tried the pill form of this herm with him. It worked considerably well although we had a long haul because it worked slowly and steadily making it harder for us to initially tell if it was actually working. We never told him the purpose of this "med" since that probably would have been counter-productive. :D

Both Corazon and Tortuga have had severe sleep issues. Corazon was so hyper-vigilant that she rarely slept. When she first came home at age 4 1/2 she would be awake no matter what time I checked on her. She would doze but insist she didn't sleep. In fact there were times she flew into an absolute rage when she realized she had been asleep! For years we put up with her response to the question "how did you sleep?" being "I WASN'T sleeping!" Even better if we accidently woke her up and said "Sorry, were you sleeping?" she would SCREAM "I WASN'T sleeping!" even as she rubbed her eyes and worked to get reoriented. As she began to attach we saw this behavior disappear although she still slept in spurts. When we discovered the herbal supplement "mel a tonin" we hit the jackpot. She slept. She actually slept! I cannot stress how significant this is on so many levels--ALL of us were better rested, she lost her anxiety about letting herself fall asleep, it "chilled" her out at night in ways that her usual bedtime routines didn't, and overall her "stress" levels seemed lower.

Both she and Tortuga suffered from what we called a "night phobia" and who could blame them given how scary nighttime had been for both of them in previous homes, especially for Tortuga. In addition to their being afraid of nighttime (I won't say the dark because Corazon was a serious night wanderer even in a pitch-dark house) I cannot imagine how stressful it must have been for them to know they would be awake and alone at night given all their traumatic experiences as very small children.  As soon as it started to get dark both of them would start what we termed our "warning system." They'd say things like:

  • "It's going to get dark soon."
  • "The dark is coming." 
  • "Are we going home soon?"
  • "We need to get home before it is dark."

Of course they adamantly denied being afraid of the dark and they denied having bad dreams (or any dreams at all for that matter.) For Tortuga his nightmares were more like the night terrors that toddlers experience and he never acknowledged having had a bad dream or even recalling that he was screaming and crying out. Corazon said she didn't dream and stuck to that story for years. The mel*a*tonin changed all that. Corazon began to recall her dreams. We are now at a point with Corazon where she is on a very small dose and we use it only a few times per week when her anxiety and stress levels seem higher. Mel*a*tonin helps slow down cortisol production at night so our bodies can rest. Cortisol levels are higher during the day and that gives us increased energy so we maintain a normal day/night rhythm. With my kids this rhythm was pretty non-existent and their stress levels (high cortisol  production times) were through the roof . The mel*a*tonin dramatically improved their rest which positively affected them throughout the day. We have had to adjust Tortuga's dosage numerous times because he had a high dependence of prescription medications for sleeping. Once we weaned him off those and replaced it with mel*a*tonin we were also able to reduce his dependence of ben*a*dryl as a sleep aid. We have also been known to use it on occasion to help him chill out during the day when he has a particularly hard time (often after a poor night's sleep.)

A few weeks ago I decided to wean them both completely off of their supplements with the exception of their fish oil supplements (good on so many levels and for Tortuga dimishes his rages/aggression). I had begun to believe that Corazon might be ready to eliminate the mel*a*tonin and reduce her ni*acin and I have always tried to keep Tortuga down to the least number of vitamins and meds (he has severe allergies). I slowly reduced their supplements over a 10-14 day period and tried to chart any changes I noticed in their awake/sleep patterns. Then I kept them free of the supplements for another 10-14 days. (This partially explains why I didn't have time to write! :) )Finally I reintroduced their supplements at a lower dose to try and determine if these lower doses worked better. For Corazon it has meant that she only occasionally needs the mel*a*tonin but the ni*acin still needs to be a daily deal although we are trying a lower dose. For Tortuga, his state of being was incredibly thrown off by the initial weaning and his sleep patterns and stress responses, moodiness, aggression, etc. were completely out of whack. Once I reintroduced the mel*a*tonin and the ni*acin I found that he still seems to need the doses we have been at for awhile. This suggests that we are where we need to be with him at least for the time being.

Working with supplements is such a challenge because there is so much information out there and depending on who you work with (doctors, psychiatrists, etc.) we get such a mix of information. I know that I believe these supplements work for my kids. I also know that I prefer them taking these to so many of the other drugs that they have taken which have had significantly greater side effects and risks compared to the supplements we are currently taking. Of course we have also balanced these with dietary changes--no milk for Tortuga for example--that help serve their needs and improve their brain's chances for healthier development.

Tuesday, February 22, 2011

Someone is officially 3 1/2....

Milagro is such an incredible treasure...and she is mine. Ever feel like you must have done something right to deserve the happiness you have? That's how this little one makes me feel. Every. Single. Day. She will be in another room doing her thing and suddenly call out "MOM!" When I ask what she needs she will say "Nothing mom. I wanted to tell you I love you forever and forever and forever."

These days our goodnight routine these days is as follows: I tuck her in. She says..."You are supposed to say 'I love you." I say "I love you." She says "I love you TOO!" I say "sleep tight." and she responds "Sleep tight and don't let the bedbugs bite." I say "I love you to the moon and back." She says "I love you to the moon and back and more than rice and beans!" I repeat what she says and she adds "AND more than strawberries, blueberries, chocolate, milk, mac & cheese, tacos, and lollipops!" Every. Single. Night.  If she comes into my room at night because she had a bad dream she leans in close to me, tears falling down her face, and whispers "mom can you hold me?" As I take her in my arms, I ask why she is whispering and she says she doesn't want to wake C. up! I think that even though she thinks it's fine to wake me up in the middle of the night this still qualifies her as a thoughtful child... :-) I cannot imagine what I did to deserve such amazing love from this little being.  Happy 3 and 1/2!





Monday, February 21, 2011

Random thoughts about cravings, compulsions, dependence, addiction

Our youngest (now 3 1/2) discovered "sweets" when she was about a year and a half.  C. has a SERIOUS sweet tooth and Tortuga has an incredibly adverse response to sugar so we have tended to keep sweets around in moderation except when they "sneak" into our lives--Halloween, Valentine's Day, etc.  Milagro quickly discovered that she loved candy and would literally "beg" for it if she knew it was in the house. So when she was just shy of age 2 we taught her to say "My name is Milagro and I have a problem. I am addicted to sugar. I love it. I want it. I crave it. I need it. Please give me sugar...sugar...sugar!" It has become a sort of "game" around here and she still engages in saying this whenever she wants us to indulge her. I think her body and mind really do "crave" sugar and if it is around she cannot stop thinking about it.

C. claims to be the same about chocolate and other sweets and describes the cravings as intense and overwhelming at times. Does this make them compulsions? As I understand it a compulsion is a powerful and  irresistible impulse to act in a certain way no matter how (ir)rational it is. People act compulsively usually to  reduce anxiety and/or worry. Sometimes I think Milagro's cravings for sugar are compulsions because they turn an incredibly pleasant, easy-going, and rational child into a tantruming "monster" and she will cry that she "needs" a piece of candy. Then there is dependence which I think of as a "compulsive" state of being in chronic need and/or reliance upon something in order to meet an overwhelming and perceived need. In essence that something is required in order for the person to "function" at whatever level they are used to functioning.

I have often viewed Corazon's need for having chaos around her (internal/emotional and external) as a dependence. She counts on it in order to function. I see Tortuga's need to be miserable in the same way. We often tell Tortuga that he is most comfortable when he is miserable (comfortable does not equal happy). Lately, I have been wondering if Corazon's constant need to be in "chaos" (physical, emotional, etc.) functions more like an addiction. It's not just about clutter and mess it's about chaos. I think her emotional state is so frequently in chaos that when it isn't for awhile it totally freaks her out and she spirals downward. In many ways she "hates" the chaos but she also "needs" the chaos because it is familiar. She knows how it feels, smells, looks, and plays out. When she isn't in chaos the world is a much more confusing place and it is very hard for her to find her place in it. She depends on it and she is driven to create it in order to restore "balance"  even if it means she is in a state of chaos. Clearly it doesn't make sense for a happy existence as I see it but I think for her it as necessary as other addictions are for others. I think this state of chaos helps to distract her from some of the more painful emotional problems she experiences and in a weird way it provides a way for her to "organize" her everyday experiences. In many ways, I think this helps meet the criteria for "addiction." Usually an "addiction" includes behavior that is motivated by cravings and/or compulsions, continued participation in the behavior despite negative consequences, and a loss of control over one's behaviors. In some ways I see her (and Tortuga) as addicted to these behaviors that maintain chaos and misery in their daily lives.


How does this help me help them? When I have tried to help them overcome these issues I tend to treat them as "bad" habits motivated by cravings much like Milagro's sugar cravings. I indulge them occasionally and I "preach" the virtues of not having these things. I also encourage them to resist the cravings and to replace them with more "positive" behaviors. Yet, if they are more like addictions, how would my strategies and support be different? One of the main reasons addictions are hard to break is that there is such as strong and powerful combination of positive and negative consequences. My children's "addictions" are no different. Their behaviors cause them great anxiety, anguish, pain, and frustration to say the least. Yet they are familiar, predictable, and in some ways provide protection and security from their other incredibly painful emotional problems. If I view their issues as "addictions" how will that change what I do to try and help them? I am not sure yet, but I am mulling this over.

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