|July-August '07 | briefing | mail | interviews | articles | psorchat | psorchat review | don't say this | flaker creativity | flakers' jargon | other places | archives | send mail | ed dewke | search | acknowledgments | legal stuff | ©2007 Ed Dewke|
How Many Family Diseases Are “Hereditary”?
Dear Ed: It's around 4:00 a.m. and the house is quiet. My husband and children are sleeping soundly in their beds. I, however, have surrendered to the intense itching as of late and decided to browse the Internet one more time for any new information regarding P or my latest medication, Soriatane. And here is where I landed. What a blessing!
My P history is like many others. Nothing new or different, but challenging none the less. I started the e-mail a while ago, but stop frequently to scratch whatever body part yells “Oh, oh, over here ... up a little ... now over...” and on and on.
In fact, I can’t remember what I wanted to write about in the first place. That was over an hour ago. The birds have now started singing and dawn is approaching. My husband will be up in a few minutes to ask me once again "What are you doing?" He genuinely feels badly for me and gives me some extra grace during the day if I’ve had a particularly bad night. But it doesn’t take away the effects of being exhausted. Because, as we all know, P permeates every part of one’s day. The special soaps/shampoos, layers of lotions, itching, wiping every chair one sits in and the list goes on or repeats itself depending on how badly the flaking is that day.
Well, my littlest native is restless and stumbled over to me in the dark and asked “Are you going to send that now?” My husband arose and put him back to bed. With children that are unpredictable, I’ve learned to like and sometimes rely on my husband’s slightly obsessive morning schedule.
OK, I remember where I was going with this e-mail. I'm throwing this out there for anyone who may have information or encouragement for me and my family. Both of my children have special needs. The oldest, 10, has severe ADD (with the H in there depending on the day), LD, and anxiety. My youngest was delivered early with multiple complications and continues to have medical “stuff” coupled with autism. For the organics out there, you probably know where I am going with this. Yes ... leaky gut. I put myself on a gluten-free/peanut-free diet over a year ago and paid more visits to natural food stores. (This was in response to a massive flare when the risks of my taking Enbrel began to outweigh the benefits. I saw some improvement, especially taking away peanuts, but obviously not enough since I’m now using Soriatane.) I am very familiar with all of the diets (or many of them) with autism spectrum disorders. We chose to stay away from them in their pure form simply because we don’t believe it would actually work. And where does it end? If I cut out every food suggested to be the cause of “leaky gut” we would live on brown rice and lamb. I look at myself with severe P and mild arthritis (right now), my youngest with his behavior issues that are sometimes so difficult to manage, and then my oldest with his inability to follow two-step directions yet builds go-carts from whatever he finds on the scrap pile, and I wonder if I’m missing something. Am I being stubborn with the diet thing or just reasonable? We each have our own medication stash and all of us have a therapist (or two depending on the child). My husband and I have always taken the middle road when it comes to health help. Good, nutritious food and appropriate medication seems about right but ... is there something genetic or hereditary or just coincidence?
Well, I've taken enough time this morning and my son is now fully awake. We plan to listen to his music and float away for awhile from all of our troubles. -Sheri
Ed’s Response: My knee-jerk vote would be for a heredity fundament to these health issues, but that's because I suspect a propensity towards what we're calling “leaky gut” is probably hereditary, too. Thanks to on-going science, the term “heredity” is becoming vague and we probably should not use it with regard to lots of diseases. Hair color? Eye color? Body type? Yes, probably all “hereditary.” But there seems to be so many genes affecting the immune system that getting bad ones from a parent may be only one variable in a complicated equation. Unanticipated combinations of genes may “add up to” our autoimmune problems, including those combinations that happen during the genetic make-over of fertilization. “Genetic predisposition” is one possible alternative to “heredity,” but it only works because it's not so common — yet. The proper semantics will come along in time — but then only last for awhile.
Thanks for writing. And share with us whatever you learn! -Ed
Sheri’s Response: My children are spending some time this afternoon with their grandparents so I had a few minutes to read your email. Thank you for all of your information. I really didn't think there was any other way to look at this phenomenon of autism/autoimmune/leaky-gut issues but you have given me a new way to look at my “genetic” make-up. I have recently steered away from the multitude of information regarding autism/ADHD/autoimmune since it is so overwhelming. There is always the latest reason and latest treatment but none of them are proven. I run a support group for mom's who have children with any type of special need so I have to be very careful to bring everyone to the middle. Some of the moms are all about diet/chelation, etc., and some are all about meds. Fortunately, the ground rule for the group is that we all respect each family’s decisions and the women have done just that. They are amazing moms and we are all learning from each other and supporting each other ... and we sing Kum Bye Yah, too. Just kidding. I am impressed with them, though.
Enough rambling. My point ... I liked what you had to say and I needed an informed person to keep me balanced (for today). I think I'll go have some caffeine with steroidal milk and bleached sugar and top it off with organic, gluten-free bread dipped in pure olive oil.Have a great day! -Sheri