Remember that saying mom told us over and over again?
"If you can't say anything nice, don't say anything at all."
I think far too many people have forgotten that old saying. I read an editorial today that just made me shake my head. I really feel Cindy's pain. At best, support among parents is lacking most times. If you take a side, you'll have tons of support. But stand in the middle and make choice on your own, well, you're on your own.
I've thrown almost everything in the book at Derek. We do biomed, diet and now ABA.
I don't see a DAN! doctor but I follow the advice of Andy Cutler in my chelation proceedure and a practitioner he recommended to me. Because of this one message group out there would attack my posts because I dare mention Andy.
I also belong to a local ABA support group that though their name would make you think they are open to all treatments, dare you mention anything but ABA and you are shot down.
You feel really lost and really alone sometimes.
I'm not saying that I have not got support, but the chatter and put downs among groups regarding anothers choice is just outrageous. As long as we as parents put anothers choice down, we'll never get anywhere. Learning to respect anothers choice is key here. And to respect means to keep your mouth closed (or your fingers off the keyboard as the case may be).
Next time you go to put down someone for their choice of just trying to help their child, remember what mom used to say.
Tuesday, August 30, 2005
Friday, August 26, 2005
Commentary on Current Media
You may have heard or read about the 5 year old boy in PA that died during a chelation treatment. Concerns from family and friends have sparked my commentary on this.
First, I do not fault the parents for their choice of chelation, I do not fault any parent for their choices with dealing with autism. Studies are limited on all accounts, from treatments to therapy and sadly us parents are forging the way to helping our kids. We don't get billions of dollars in funding like juvenile diabetes or leukemia, though 1 in 166 kids are on the spectrum, more kids have autism than juvenile diabetes or leukemia. Its a very sad situation to be in, to loose your child right before your eyes and no one will help you do anything about it because there are no studies or the disease itself is so politically charged. I've never seen a childhood disease be fought about so much instead of people banding together and just try to help.
The media has taken this story and only a few reports have got close to a correct story. They are taking something that the reporter knows nothing about and talking to one sided sources, and not even coming close to doing their homework.
This boy was using an IV chelation method, using a chelator called EDTA. As you all know, I am against IV chelation, I personally feel it is too harsh and too fast. In some cases, and I don't know about this one, but children are given a large dose of the chelator over a 24 hour period to see how much metals are removed from the system. My feeling on this is that this is too much stress on the body, and can leave the metals to retransport themselves to body organs and cause more damage than good.
The media is mainly talking to sources that are against chelation. I've read ONE story out of 15 last night that talked to parents who have an organization that are pro chelation. Just ONE. The next thing the media is reporting incorrectly and I've read this in all articles is that chelators are given under the skin or orally. This is not true, as you know in my case all of Derek's chelation medication is given topically either a cream or drops put on his skin and rubbed in. His chelators are not given in mass but rather in very small doses that require me to give them as often as every 3 hours including through the night. My philosophy is to take the metals out slow and allow the body to recoup each time for at least a week before chelation is done again.
The media also has not mention at least four other chelators that are used, leaving the average reader to think there is only one. The other four commonly used are DMSA, DMPS, ALA and TTFD. All of these can be administered in different methods as well from IV, oral and transdermal (skin).
Lastly, the media has failed to mention that this is the first death that we know of since 1950's using IV chelation for autistic children. I think that with thousands of parents using this method thats a pretty small ratio.
First, I do not fault the parents for their choice of chelation, I do not fault any parent for their choices with dealing with autism. Studies are limited on all accounts, from treatments to therapy and sadly us parents are forging the way to helping our kids. We don't get billions of dollars in funding like juvenile diabetes or leukemia, though 1 in 166 kids are on the spectrum, more kids have autism than juvenile diabetes or leukemia. Its a very sad situation to be in, to loose your child right before your eyes and no one will help you do anything about it because there are no studies or the disease itself is so politically charged. I've never seen a childhood disease be fought about so much instead of people banding together and just try to help.
The media has taken this story and only a few reports have got close to a correct story. They are taking something that the reporter knows nothing about and talking to one sided sources, and not even coming close to doing their homework.
This boy was using an IV chelation method, using a chelator called EDTA. As you all know, I am against IV chelation, I personally feel it is too harsh and too fast. In some cases, and I don't know about this one, but children are given a large dose of the chelator over a 24 hour period to see how much metals are removed from the system. My feeling on this is that this is too much stress on the body, and can leave the metals to retransport themselves to body organs and cause more damage than good.
The media is mainly talking to sources that are against chelation. I've read ONE story out of 15 last night that talked to parents who have an organization that are pro chelation. Just ONE. The next thing the media is reporting incorrectly and I've read this in all articles is that chelators are given under the skin or orally. This is not true, as you know in my case all of Derek's chelation medication is given topically either a cream or drops put on his skin and rubbed in. His chelators are not given in mass but rather in very small doses that require me to give them as often as every 3 hours including through the night. My philosophy is to take the metals out slow and allow the body to recoup each time for at least a week before chelation is done again.
The media also has not mention at least four other chelators that are used, leaving the average reader to think there is only one. The other four commonly used are DMSA, DMPS, ALA and TTFD. All of these can be administered in different methods as well from IV, oral and transdermal (skin).
Lastly, the media has failed to mention that this is the first death that we know of since 1950's using IV chelation for autistic children. I think that with thousands of parents using this method thats a pretty small ratio.
Thursday, August 11, 2005
One of Those Three Month Updates
I'm getting good at these ;-)
I would say in a way we've taken the summer off. EI has continued with some time off here and there as per the public school schedule but we've missed chelation schedules since late June. Some due to my sheer tiredness, and some due to traveling.
Speaking of traveling myself, Derek and my oldest took a trip across country to visit a friend in New Jersey for a little over a week. It was quite a trip, a flight to Baltimore, a stay there for 2 days, then a train to Philly, then a flight with a plane change home. Derek did SO well. I think he was the best behaved 3 year old on the flight! People would come by and comment that they had no idea he was even there. It took a lot out of me because I kept him constantly entertained but it was for a few short hours and we made it through.
He slept well, he was a little "stimmy" but it was to be expected. He loved the New Jersey shore and sat with me on the beach with the waves smacking us in the face for nearly an hour. There was a lake by my friend's home and he was thrilled, I think he was a fish in a former life. My friend has a daughter the same age as Derek and since we've been home he asks about his friend and wants to play with her. I printed out some pictures of them and lamenated them for him.
Our in home ABA program started in late June and its going well. We're at 2 hours a day 5 days a week and will work up as he can tolerate it. He's still napping so between EI in the morning and ABA a couple hours in the afternoon he's got a full schedule right now. My therapists are great, I had so many issues finding someone who wasn't flakey. Missed interviews, calling and canceling was just becoming a nightmare. Now we are dealing with insurance, we've finally got approval for ABA coverage but its almost nothing, at just a few hours a week it will be out in 5 months.
Now that trips are over and ABA is going I'm getting back into things, chelation and trying to figure out how to get vitamins into him. I'm also looking into DMG/TMG. Also a second hair test has been done and I'll be sending that in tomorrow. He's still GF/CF and that continues to go well. He's even had a peice of pizza with no ill side effects! He's obviously got some gut healing going on.
My other plan is to start to introduce potty training. At EI they take him to the bathroom with the other kids so he's exposed daily. He also follows us in too, and washes his hands with us, so there is some sense of toilet use and a routine to it. Wish us luck!
One last thing- I've joined an autism blog ring, and I invite you to check out the other blogs.
I would say in a way we've taken the summer off. EI has continued with some time off here and there as per the public school schedule but we've missed chelation schedules since late June. Some due to my sheer tiredness, and some due to traveling.
Speaking of traveling myself, Derek and my oldest took a trip across country to visit a friend in New Jersey for a little over a week. It was quite a trip, a flight to Baltimore, a stay there for 2 days, then a train to Philly, then a flight with a plane change home. Derek did SO well. I think he was the best behaved 3 year old on the flight! People would come by and comment that they had no idea he was even there. It took a lot out of me because I kept him constantly entertained but it was for a few short hours and we made it through.
He slept well, he was a little "stimmy" but it was to be expected. He loved the New Jersey shore and sat with me on the beach with the waves smacking us in the face for nearly an hour. There was a lake by my friend's home and he was thrilled, I think he was a fish in a former life. My friend has a daughter the same age as Derek and since we've been home he asks about his friend and wants to play with her. I printed out some pictures of them and lamenated them for him.
Our in home ABA program started in late June and its going well. We're at 2 hours a day 5 days a week and will work up as he can tolerate it. He's still napping so between EI in the morning and ABA a couple hours in the afternoon he's got a full schedule right now. My therapists are great, I had so many issues finding someone who wasn't flakey. Missed interviews, calling and canceling was just becoming a nightmare. Now we are dealing with insurance, we've finally got approval for ABA coverage but its almost nothing, at just a few hours a week it will be out in 5 months.
Now that trips are over and ABA is going I'm getting back into things, chelation and trying to figure out how to get vitamins into him. I'm also looking into DMG/TMG. Also a second hair test has been done and I'll be sending that in tomorrow. He's still GF/CF and that continues to go well. He's even had a peice of pizza with no ill side effects! He's obviously got some gut healing going on.
My other plan is to start to introduce potty training. At EI they take him to the bathroom with the other kids so he's exposed daily. He also follows us in too, and washes his hands with us, so there is some sense of toilet use and a routine to it. Wish us luck!
One last thing- I've joined an autism blog ring, and I invite you to check out the other blogs.
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