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.

7 comments:

ManyBlessings said...

Would you mind sharing how much you give Tortuga? Especially the Nia*cin and fish oil? I am interested in possibly using both or either of those for my little guy who wrestles with aggression.

triplehmoms said...

I am curious as to why you wanted to lower, if possible, the levels of niacin and melatonin in your kids. We're fairly new to using niacin (don't use melatonin) and so I just wanted to follow your thought process on this. Can you elaborate more on what you see different in the kids without the niacin? How much do your kids take/use?

Lee said...

I am curious about the Mel*a*tonin and will need to do some research I see! Lissa is a very poor sleeper. I am not sure that she is hyper vigilent but I believe that trauma and stress in utero can have a profound effect. She just doesn't sleep easily or well as a general rule. She feels a need to co-sleep but not to be touched. and she wakes up if an ant crawls on a leaf five miles away! LOL

Dia por Dia said...

Lee,
Our younger son doesn't sleep well and for at least 3 years (ages 2.5-5.5) it seemed like he never slept. He had night terrors and nightmares too. I give him one melatonin and it makes all the difference in the world. When I take him off of it he goes back to not sleeping. There are lots of good articles on melatonin online but let me know if I can refer you to some I found helpful.

Dia por Dia said...

ManyBlessings,
I am happy to be more specific but prefer if you email me directly (nlbtexas at gmail dot com). I don't want to start a debate of dosages and whys etc although I am happy to explain our process of arriving at the right dosages to you. I strongly recommend using both. They made a world of difference for our son.
Best,
Dia

Dia por Dia said...

triplehmoms,
I am working on a niacin post which is partly why I didn't deal with it as much in this post. That said, I don't like giving kids any more "meds" including herbal supplements than they really need so part of my reasoning is if they need less then I want to reduce it. That said, there is little scientific research to show what the impact of long-term melatonin use is (and niacin) so I am just being cautious.

In terms of what I see that is different with the niacin, let me try and get that post written out. If I don't do it soon please feel free to email me and I will try to explain. It has been huge for us and the difference when they don't take it is also huge!

Lindsay Mama to Nine said...

Can't wait for the Niacin post! REALLY! We have been useing it for about four months...I have seen some major differences, in my kiddo's.
I LOVE THIS POST! What a dedicated, inspired, Mama you are!

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