Copper Toxicity Updates
UPDATE - December 2008
So several weeks ago I met with the nutritionist and got my son's test results back. They were in some respects remarkably different than the first test. She attributed that to the fact that he was still on his Abilify when he took the first test.
Interestingly, his copper level had not changed at all and yet she did not mention any concern regarding his copper level. She had told me previously that she had seen much higher levels than his (on his first test) so I had wondered if she would react to it at all.
I had been reacting to the report that accompanied the initial test. Since I did this test through her, although it was conducted by the same lab, I did not get a chance to see any written report from the lab this time. I assume she either has it or there wasn't one. I guess I will ask that next time we meet.
So what did she say????
Well, this time around, his test was saying he was a FAST OXIDIZER. Too the best of my ability I understand this to mean he tends to crave sweets and carbs, be protein deficient, and burns through his fuel at a very high rate and therefore his body chemistry is always out of whack.
She swears, that with the right intervention, we can turn him back into a food loving child who eats the right things at the right times. So we are starting with some supplements:
She also recommended a protein powder that is velvety soft and mixes beautifully. I am most thankful for this right now as good protein powder is hard to find and the process of elimination of the bad ones can be pricey as you waste a lot looking for the right one.
So three times a day he has his supplements with a protein enriched milkshake. She also has us using only Breyers ice cream since it is the best ingredients.
We are supposed to be pushing high protein meals. Truthfully, this isn't really happening. He is still pretty picky about what he eats. But getting the shakes 3 times a day seems to be keeping us out of the hypoglycemic highs and lows so that is great!
And he has put on about 5 lbs!!!!
I am hoping to get to sit down with her again and evaluate more right before Christmas so I will let you know. Wish us luck.
UPDATE - February 2009
I won't lie to you. It has been a rocky few months trying to get this settled.
Around Christmas time I kind of "had it out" with our nutritionist because she kept saying things like "Every two hours, hand him a piece of cheese," or asking my son "what would you be willing to eat for breakfast" and expecting him to keep his word.
I had to explain to her that I was not going to pay her so she could "convince" him to eat. He will not be convinced of anything. If he was a compliant child, we wouldn't have all these eating issues.
I also told her that if she had told me when we went into this thing, that he would have to agree, from the outset, to change his eating habits, I wouldn't have wasted her time. I needed her to give us supplements that might encourage his body to ask for more appropriate food.
She wants us to push the protein, so we do. But there are days where I think all he eats is 12 string cheeses. He still will not eat any meat of any consequence, except bacon, and that's just in the last couple of days.
We continue to follow the supplements she suggested. The list is even longer than before:
I couldn't even begin to explain to you the why of all of them.
Nor would I recommend that you start trying all of them yourself.
I was very clear with her that what I valued most was her expertise in supplementing him safely. He takes all of these things 3-4 times per day. It is a ton of pills.
You absolutely must seek your own expert if you wish to try something similar.
I will say this......
We got him off his Melatonin. Though he doesn't go to bed by 8pm or even 9pm sometimes, he does go to bed without being sedated by something.
We seem to be avoiding the highs and lows of blood sugar and hunger issues.
We are more acutely aware of what he should be eating and how his body responds to such.
So we shall see. Back later with more....
UPDATE - June 2009
Oh - where do I start!?
We are still at it. She has finally decided after 6+ months and 3 hair analysis that he is in fact high in copper. I guess deciding this isn't as easy as having one test come back high in copper. You have to do several tests over many months and watch the fluctuations. So now we are focusing on "freeing up his liver" to better process the copper he has. It's not that we want to rid the body of the copper, we just want to have it use the copper properly.
So here is our latest list of things he is taking (AGAIN, DO NOT TRY THIS ON YOUR OWN - CONSULT AN EXPERT)
It's 16 pills 3x a day! It's trying, no doubt. He hates swallowing that many so often. A couple of things I asked for this time and noticed along the way:
1. I demanded 3 times a day instead of 4 like she wanted. That was just too much.
2. I only give him the B6 in the first 2 doses. He was having trouble going to bed at night and when I stopped giving him the B6 in his night dose as well, that seemed to help.
We are still pushing the protein foods. He fell off the wagon and has stopped eating any protein other than cheese. This is the reason for some of the things like the Pancreatin and Bifidus Balance. To help his body respond and digest better. So we are trying to get back on the protein train! Yesterday he ate 1.5 sandwiches of egg olive which is our southern version of egg salad; just eggs, green olives, and mayo all blended together. That was amazing!!
He continues to avoid the high's and low's of blood sugar issues which is great. I'm hoping to make some real strides this summer because I don't see him going to 7th grade with all these pills in tow. We'll see!
Sometimes I have to ask what myself what the goal is here. I guess I keep coming up with different answers but a few things I would like to see happen if possible are:
1. Getting him to eat like a normal person. Meal time is a huge issue in our house and it is because of him. Sadly, despite my efforts, it has effected our daughter who as a result eats anything and everything. So now I have that to watch as well.
2. As a result of eating better, I'm hoping his brain will work better, thus impacting his learning, moods, general functioning. Also I hope he grows a bit. He continues to get taller and put on weight (slowly) but his sister is 3 years younger than he and almost as tall. My husband and I are above average for height. He has some catching up to do.
3. I would be lying if I didn't admit that ultimately, I would like to see him off his medication, someday.
UPDATE - July 2009
So the eating egg olive sandwiches lasted about a week and then he burned out. That is what he always does, burn out on something. He really hasn't found a suitable replacement. They went on vacation with their grandparents for 10 days and despite telling my mother to push the protein, I think he ate too many carbs because he came back wanting pasta all the time! So again, we are fighting the battle of eating the appropriate foods. I tell you, his behavior was definitely better when he was eating egg olive!
UPDATE - September 2009
So I have majorly slowed down with the supplements. I haven't spoken to our nutritionist person in over a month. I've stopped giving him his supplements 3 times a day and instead am doing 2 times a day, sometimes skipping days all together, like when he went on a trip for school or recently when he was sick and I felt like that was too much in his tummy.
I contemplated finding someone and getting a second opinion. But really, it just doesn't seem to matter. Nothing we have done has allowed him to come close to getting off his medication. And nothing has seemed to make him eat better for longer than a week.
I don't like giving up, but it's been almost a year. If it was working, I would think we would be further along by now. And I have never found our lady very easy to talk to. She lives in a bit of a "bubble", thinking people can decide not to send their kids out into the world until they are "healed". Please...I have work, and he has to be educated, period.
If anyone out there has had better success with the copper toxicity thing than we have, please let me hear from you!
If you have any questions about what I have learned or what else we are doing, feel free to
contact me.
UPDATE - APRIL 2010
Well, life has taken an interesting turn for us with my son. Back in the fall I took him to see a pediatric endocrinologist. Tried to explain to the doc that something just isn't right with him and could he run some tests. He basically said he didn't see any physical reason to be concerned (being 12 yo and only weighing 70lbs isn't concerning???) but agreed to run some preliminary tests. Most of which were thyroid and adrenal based.
Interestingly, his thyroid tests were NOT normal. His TSH - thyroid stimulating hormone - was high. So he says, test again in 4 weeks. We do, and it is even higher! Then his office calls and says he wants to see you but not for 2 more months! What!
So we bail on him, I start researching some options, and discover a book. "Why Do I Still Have Thyroid Symptoms? When My Lab Tests are Normal". Through this book I am able to find a doctor here who follows the methods of treatment outlined in this book. The book is basically all about the thyroid being part of a very large system and treating just the thyroid does not in any way fix the problems one might be having.
So long story short, the first line of treatment is to go GLUTEN / DAIRY / CORN FREE. And that is what we are doing. Since mid January, his diet has been completely revamped. He is still a picky eater and we still fight everyday about food. But we will figure this out!
We also, in this process, did stool and gene panel tests through Enterolab
which show that he is in fact gluten intolerant, has a leaky gut, AND carries the gene for Celiac disease and a gene for gluten intolerance. His casein (dairy) test was not abnormal yet, but that is apparently because it can slip through on the gluten receptors so it doesn't always measure accurately on the test until you have the leaky gut thing resolved.
So why do I tell you all this?
Because this is where we are now. Living the life of monster cooking. By the way, gluten free stuff can actually be really good. I have done a lot of cooking and baking. And we don't buy most of the gluten free products because many of them still contain corn, which he can't have.
Giving up his beloved cheese has been the hardest part. But he's managing!
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