Oh Clonidine, oh Clonidine, how lovely are your effects!

Jaymes is doing very well on his Clonidine. I was worried that it would sedate him too much, and for the first few days, it actually did. However, he seems to have adjusted very well, and it's made SUCH a difference. We still have screaming fits, don't get me wrong. I don't expect perfection. But the child who previously could not sit still long enough to take his meds, can now sit and watch Elmo on the couch and snuggle for the entire movie. He still lines up all the canned goods in the house while watching, but he sits for the most part and really attends to the movie. We love Elmo in Grouchland- excellent movie. Great music.

Jaymes hasn't really been talking... I don't know if it's a side effect of Clonidine (I doubt it, honestly) or if it's just a phase. He's been refusing to talk at school, and at therapy. But when he does talk, it seems to be pretty much just "Want to watch Elmo." At 6am this morning, getting dressed for school "want to watch Elmo." At therapy (where obviously there is no Elmo nor any TV) "I want to watch Elmo."

It's great talking, really is. But I wish he'd come up with some more original things to say, because at this point, I'm aware that his mission in life is to watch that Elmo DVD a million and one times before he turns 5.

Yes, my boy is almost 5! Can you believe it? Time flies, it really does. It seems like just yesterday I was snuggling Jaymes' little 5 pound body... Before the diagnosis, of course. We've had such a wild ride this last almost 5 years... Crazy. But totally worth it.

Jaymes is a great kid. He's adorable, he's smart, and he's my little buddy. His skin has been horrible, his eczema has been making him crazy. His teacher called me to say he was itching at school. It got so bad he was red scales head to toe- even in his diaper area. He would wake at night crying because it itched so bad. Doctor gave us an oral anti itch/antihistamine, and more medicated lotion. His skin is the softest it's been in a long time. Almost not bumpy. It's nice. He's feeling a lot better. He's got a dermatologist appointment in January to see what we can do for the poor little guy.

Oh, and by the way, we have -the best- caseworker ever. Be jealous.

America's Got Talent...Or do they?

I'm hoping that blogging will help me forget about losing my Chancie dog, as nothing else is working. I feel like i can't function normally... Can't look at the couch where she slept, or at the grave where her poor sweet body is, or at the dog dishes... I was calm finally yesterday and then a florist came with flowers from the vet's office. Nice, I know, but I lost it again. The flowers are on her grave... My other dog, Echo, is depressed. She won't eat, and wanders the house looking for Sweaterdog.

Anyway. Blogging about things that irritate me tends to make everything else go away, if only as long as I'm actually typing out the post... Any respite from my sadness is great. So here we go.

Why, on shows like America's Got Talent, is it such a big deal if a contestant is autistic, or has an autistic sibling? I've seen so many people post on their blogs "so and so contestant is autistic! I vote for them!" or "He's got an autistic brother, everyone needs to vote for him!"

I remember the little boy on AGT, he was adorable. don't know if he won, I don't watch that stuff. I just saw it on a youtube video. I thought it was an absolutely cute song, and was thoroughly impressed at the kid being able to go on stage and sing, autism or not. Good for him! But really... These shows are a contest. I know if I were a contestant, I'd rather win because I -had- talent, not because I had a disability or knew someone with a disability.

These shows are often based on a viewer voting system, aren't they? Isn't it kind of stupid to vote for someone in a way that has nothing to do with how well they did? Could I go on the show, and sing in my horrible off key voice and win because I have an autistic child? Because ya know, I could use the money. Is that really how it works?

I'm curious (not curious enough to look it up, mind you) as to the background stories of those who win these shows. Remember Fantasia, on American Idol? Great example of a sad, sad backstory, PLUS real talent. Maybe no more talent than thousands of other girls with equally depressing stories, but talent nonetheless. She ended up with a Lifetime movie based on her life- crazy! Do you think she would have won Idol if she were from the private school, trust fund crew? Not knocking Fantasia, she was talented, she probably deserved to win.

I guess my feeling is that these people should be judged on their actual talent- not their misfortune. It's not a big contest to see who's got the more horrific past. You can overcome a shitty past, and you don't need Idol or AGT to do that for you. True, money is nice, but you can still overcome things without the green.

Those of you who watch these kinds of shows- what do you vote based on? Looks? Age? Singing voice? Behavior off-stage? Religion? Color?

Chancie...

This morning my beloved old Sweaterdog, Chance, passed away. I took her to the vet and he agreed that at this point euthanasia was the kindest option for Chancie. I paid extra for sedation prior to the injection, so she could fall asleep and pass in her peaceful sleep.

She fell asleep in my arms, her little faced squished under my chin. It took about ten minutes. She was calm and comfortable, wrapped in her blanket, snuggling with me. When she was asleep, the vet gave her the euthanasia, and she was gone within a few seconds. There was no pain, no twitching, none of the awful things I have seen dogs do as they die... Only peaceful rest.

I have never had to put a dog of mine to sleep. It was horrific, and I did not even realize how truly devastated I was until afterward. All I can think of, all I can see in my mind, is her sweet, trusting eyes... She trusted me... And I basically killed her. I did it for good reasons,but I caused her death, regardless.

No, she had no hope of being pain free, and she would not have gotten any younger... But the thought that I was the one holding her as she died horrifies me.

I drove home with my hand on her still warm body... I scratched her ears and cried, and told her how sorry I was. I carried her out of the car, and Jason said his goodbyes...

I can't think about when we put her in the hole in the cold ground, or when we covered her over with rocks so nothing will dig her up. Every time I walk past her grave, my throat closes up and I want to curl up in a ball with her down there.

I just want to see her sweet little curled up self asleep on one of the couches, snoring. The living room looks desolate and empty without her. Her presence filled our home, now it's empty and lonely.

I want to feel good about ending her pain... I just can't.

Warning

If I'm an almighty bitch for the next week, please forgive me. Tomorrow morning I'm taking my old Sweaterdog, Chancie, to the vet to be put to sleep...

We're not taking it well.

So apologies in advance.

Chelation... My thoughts.

I've been wanting to blog about chelation therapy for a long time, but felt like I needed to research more to understand fully what is entails. I thought perhaps it would not be as horrifying as I had thought, if I understood it more thoroughly. So I spent a couple weeks reading up on it. The pros, and the cons, the how's and why's and who's. I came to this conclusion... It's as unnecessary, unproven, and potentially harmful as I thought. But the research was enlightening. I had not know that there was oral chelation. I assumed it was exclusively IV administered.

In those couple weeks, I never once found a single article showing scientific proof that chelation did anything for an autistic child. I found a lot of doctors and alternative health sites promoting it, mostly using McJenny as a selling point. Did she even use chelation? I'm not sure. She seems to be the sole source of "scientific" proof for most of these types of practitioners. You all know my opinion on McJenny. I'd listen to a McNugget before listening to a word McJenny has to say. Not simply because I disagree with a lot of her agenda, and her wild claims that her way can cure all autistic kids, but because she is drowning out the voices of people who have a clue.. Oh boy, i need to stop and get back on track. this is not a McJenny post.

Ok, so from what I read, chelation is done by giving the child a chelating agent, either orally or in an IV (usually DMSA, from what I saw). This agent enters the bloodstream and binds to heavy metals in the blood. Apparently it also binds to Calcium, which seems like it would be very bad for kids, especially tiny ones like Jaymes, who need as much Calcium as possible. Anyway, the heavy metals and chelating agent are then excreted from the body by way of urination. It can take between 2-4 hours per treatment, and some people will treat their kids DAILY.

All medical issues aside, in what world is it appropriate to force a child to be still for a treatment (even if they can play or whatever at the doctor's office, I would hope to god their don't send kids home to chelate without medical supervision.. though it would not surprise me much...) for 2-4 hours? An autistic kid? Nope. that in itself would be torture for Jaymes.

Then there is the basic premise of this therapy. It all goes off the -unproven- theory that Vaccines cause autism, because they contain mercury (which they do not, anymore). Basically the only "proof" these people have is what their patients have said. Sorry, but that's bull. Desperate mommy gets convinced to try this miracle cure, and afterwards is asked if kid is improving. She is desperate. She wants it to be true, and she sees improvement where there may or may not be any. You cannot rely on a parent to evaluate the effectiveness of a treatment. I know my child, but I do nt have the trainning, or unbiased opinion to be able to say "well, this was beneficial." or "This was a waste of time, there was no benefit to this treatment." We see what we want to see- we want to see that something has helped, and we will see things that are not there. Of course those docs are all for agreeing with the parents, after all, the parents are furthering their cause- and giving them money. Generally chelation is a self pay therapy. No insurance covers uncessary, intrusive, potentially dangerous therapies, not even Medicaid. After working in medical billing for awhile, I've learned that self pay patients are the doctor's FAVORITES, because doc names the fee and they have to pay it. There's no messing around with insurances, taking lower fees, etc...

One very interesting thing that came up on google when I was looking up info was this... The NIMH had proposed a study to see if there was any validity to using chelation to "cure" autism. thank god for sensible people is all I have to say. They canned it, deciding that because “there was no clear evidence for direct benefit to the children who would participate in the chelation trial and that the study presents more than a minimal risk."

Our scientific community needs to concentrate on "real" research. I'm not saying ignore biomed totally. I think vaccines can always be made safer, and that there should be a constant drive to improve more and more. I do not think that the folks advocating (and rabidly attacking parent who are looking for answers) "NO MORE VACCINES!!!" are doing anyone a service. We need our vaccs. We just need them done safely. Spread them out over a longer period of time. Keep the research going to make sure everything in those vaccs is safe, and will not cause harm. I do not deny vaccines can cause harm, but I refuse to believe the unproven theory that they cause autism. Kids have vaccine reactions- look at Sierra's hospital stay a few months ago. That was without a doubt vaccine related. But guess what? She's still not autistic.

Another thing that bears looking into is dietary interventions. I'd love to see some real scientific studies on the GFCF/Feingold/ETC diets. I'd love to see Medicaid and other insurances one day cover those costs for those of us who cannot afford to feed our children purely organic, healthfood store stuff.

How about some more genetic studies? Lets figure out what causes autism, and how to cure it. And no, I don't mean with miracle vitamins, foot baths, and chakra releases.

Medication studies. So few meds are approved to treat kids with autism. What about finding more, safer drugs with less side effects? How about we learn some more about treating kids under 5?

There are SO many better things NIMH could research, thank god they realized this and did not waste time and resources on a worthless cause like chelation. Thank god they realized the risks involved. Good for them.

We need to take a step back and look at the big picture. Stop bitching about the pharmaceuticals. they're really not out to kill all our children and steal the billions we throw at them. If they were, they'd simply pop some arsenic in the vaccs and be done with it. Regardless of what causes autism, why obsess over it? How does it help you to know why? What, get some free cash off the pharma companies when you sue for the "vaccine injury"? That doesn't help your child. We don't need to focus on who to blame, we need to focus on helping our kids live better, fuller lives.


In other news, Jaymes is doing pretty well. he's been having weird manic moments where he flails around so hard he hurts himself, so we have d/c'd Risperdal and started Clonidine. It seems to sedate him for a bit, then wear off. It is a 4th of a tablet though, and the tablet is only .1mg. So, tiny dose. We'll see how it does. I don't want him so sedated he isn't him, but i also want him to stop hurting himself and tearing up everything in sight!

He's been talking up a storm, and loves his Goosie Cards. There will be a blog about how he's using those pretty soon here.. He gets it though, and he loves the cards. He's doing well in therapies, and in school. He went poopy in the potty at school, but here at home we are not having any luck. Sierra spends a lot of her time on the potty, lol.

Getting geared up for the holidays.. Gotta get the Xmas tree and get some decorations up!

blogger FAIL

I know, I suck. I've been so busy with everything from the horse to Jaymes to the house and holiday crap. To top it all off, soon here I've got no choice but to send my piece of garbage Dell laptop back for repair. Meaning NO internet for.. how long? Couple weeks?

-eye twitch-

Anyway, I promise to get a decent blog post out tonight or tomorrow. Please don't abandon us, things are a bit hectic and my muse is sleeping. It'll go back to normal. I've been researching for a blog on the insanity that is chelation therapy... it'll be controversial at least, if not entertaining and informative.

Inb case anyone is interested...

Goosiecards is doing free shipping on orders until 12/31/08. Save yourself $5.99 (I think)! I'm going to order some I think... When I'm not broke.