Wednesday, November 14, 2007

When to take chances...this week it was a spinal tap

No cause, no cure, more questions that answers and we all are desperate to help our children. In a world where there is no "protocol" no single treatment plan for our children we are left to learn for ourselves. I am always asking my self "What chances should I take", "Who Should I listen to", "What therapy or drug just might be the magic bullet".

We all want to cure our kids, we all want our kids to live a full life and we all know that right now no one can promise us that...so when something comes along and people are promising results, we want to run and jump right in. Sadly, we have to be careful because like anything there are going to be some "Snake Oil" salesman -even ones who believe in their oil - praying on our desperate need to help our children. I've learned to listen to my gut and really think about what is being recommended and does it really sound like it could help my guy, and shut off the part of me that just wants to try anything to make him better.

We each have to make our own choices of what to try and what to avoid. I have tried intervention, dietary changes, bio medicine and traditional medicine. I have remained open to trying anything that I am certain will not harm Nicky. Which means that I have passed on some treatments. I have also had to learn the hard way, that like many other things in life, it may not be the treatment itself, but the person administering the treatment. Because much of the alternative care we have been driven to pursue is not regulated, it becomes totally up to us to pay careful attention to who we are dealing with and choose our teams wisely.

After 7 years of trying different things I have finally settled in with "my group" of professionals I trust. Most of whom have children on the spectrum, so they are heavily invested in helping our children. One of these people is Nicky's neurologist. He has an excellent history with children with developmental disabilities and he is a good cross between conservative and progressive. He continues to be involved in both his practice and research. He is not opposed to trying new things both traditional and non- traditional once he is assured that his recommendations will not harm our kids. Because of his open mindedness I routinely forward him information I find about new studies, new treatments and ask for his thoughts. This has been very helpful in creating an open dialog and letting him know that I am involved in Nicky's care. It also helped me to build trust in him, because if he never responded or tossed out all new idea's I would have known he was not the doctor for us.

So we have tried lots of new things including:
Namenda - an altzheimers drug to improve brain function
Melotonian - an herbal sleep supplement
Turmeric - in hopes of reducing inflamation

He does not believe in the whole "bio medical" intervention as being a cure for our children but he is not opposed to parents trying the parts that will not harm the children (mostly dietary restrictions and supplements).

This week I took Nicky to see him and when he said that perhaps we could get a better look at how to best treat Nicky by doing additional tests: Abdominal X ray - to look for abdominal blockages and a spinal tap I agreed. I'll let you know what we learn.

Notes to myself and others:
l. Don't hesitate to ask lots of questions - because everyone is guessing at this point.
2. Work with professionals who has a long history of helping our children.
3. Research up the Doctors and research new treatments before jumping in.
4. No matter how great something sounds...always use my common sense and ask questions.

6 comments:

  1. Is there ever a concern that at some point, Nicky will be little more than a guinea pig? We all want the best for our kids, and you have tried just about everything science has to offer. At some point, maybe it's more important to just let Nicky be who he is. He isn't the one who cares about finding a cure for Autism. He has family and friends who care a great deal for him, and he can be a happy person in his own way without all of the experimental medical treatments. You're a wonderful mom. You do more than most in your situation. It's really okay not to have all of the answers. It's really okay to have a child who isn't society's idea of "perfect". Nicky isn't going to love you any less than he does right now, because you didn't single-handedly find the cure for Autism. You didn't fail, and you won't fail- because you're already his champion in so many MORE important ways! You love him with all of your heart, you push for all of the therapy he could possibly need, and you have never given up on him even in the roughest of moments. What more is there? What more could he ask for, if he could ask for it? If he even knew what to ask for? He's much better off than a lot of kids who don't have any disability. He's a lucky boy. He has a wonderful mom!

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  2. What a great perspective Anonymous. He is a bit of a guinea pig, and that too makes me sad. At the same time I'm not sad for trying to do all that I can. I feel blessed that no matter the outcome I've done all that I could do, including finding Doc's who do all they can do. Thank you so much for recognizing that my efforts reflected what "Science" has to offer! I try to stay close to science and interventions that I know won't hurt him. Boy I pray for the day there is a full treatment protocol, so we don't have to be so experimental with our kids. :(

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  3. I have to agree with anonymous that making our kids guiney pigs becomes at some point useless. I don't believe in the Alzheimer & psychotropic drugs on our kids because they don't have a deteriorating nervous system and no one knows in the long run, what that will do to our kids internally, I feel, more damage. I do believe certain medication for specific conditions do help such as seizures and anxiety but those like Nemenda which are hypothetically suppose to help with motor planning is just not known, its just a theory. I think our kids do need to flap their hands or rock even when they are working because that's what helps them absorb and process information. I know it doesn't look "normal" but they do it for a reason not just to perseverate, but it actually helps them process. That's just my opinion having done more of a developmental programming for my son vs ABA. I agree that you are a great Mom Donna and your son is very lucky to have you in his life. (:

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  4. Thanks to both "Anonymous" posters, you give me so much to think about.

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  5. Who is your neurologist? I'm currently looking for one for my kids. Kudos to you for everything that you do for your son!

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  6. Who is your neurologist? I'm currently looking for one for my kids. Kudos to you for everything that you do for your son!

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