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.