Lib has been on his medications now for 2 weeks. Yesterday, the teacher told me that he picked out his NUMBERS by verbal command only! He cut out numbers using regular scissors and matched them perfectly. He is now pointing on a regular basis.
He is 7 years old and it looks like he is in the process of catching up.
Not only that, we are seeing more connectedness, more eye contact, more awareness. I am so glad we made the choice to medicate. I would say if you can stop absence seizures naturally, by all means do it, because medications are not a magic bullet either. Drugs are the last things I really wanted to put my son on. However, he is on such a small dose and, if it can make such a big difference, then to be honest, it has brought me great relief. The seizures just got scarier looking.
He was having seizures for so long as we tried various things in different combinations: Taurine, melatonin, DMG, milk thistle, GABA, B6/magnesium, etc. The seizures just kept coming more regularly and faster, too. Seems so many things that were supposed to work had the opposite effect in my son.
Since starting the medication, I have synchronously run into people who tell me their story about their child or their sister or their friend who had absence seizures as a child, took medication, and eventually grew out of them, so I can see that I am receiving lots of reassurance about my decision.
And, my son is happy. He no longer naps every day when he comes home from school. He is using so many pictures to communicate it's hard to keep up. He's trying to get words out.
For Liberty, at least, this seems to be perhaps one major piece of the puzzle found.
Wednesday, February 24, 2010
Tuesday, February 16, 2010
I don't know what anything is for...
I was thinking about a line from the Course in Miracles, "Today, I will judge nothing that occurs." Have you ever tried to do that? Refrain from constantly interpreting what anything means? Today, I can tell you that I certainly don't know why my son has autism or why things are the way they are, but the more I detach from needing an answer and the less I judge, the more I allow things to flow. I love Ram Dass and I found this video of him before his stroke.
Tuesday, February 9, 2010
Blogging Revisited / Seizures
I have taken a hiatus from the blog for various reasons. We have been working with a holistic neurologist/DAN doctor for the past few months, trying to get Liberty's seizures under control with natural products, but last week, the teacher called and she saw something new that scared her. Then I witnessed it, as well. Turns out we were seeing true absence seizures. The other behavior we THOUGHT were absence seizures were not. Go figure!
We were able to obtain an EEG fairly quickly. This time Liberty was not sedated but awake. He had to be put in a papoose from head to toe, but the technician was wonderful. He cried, but really he was just angry. Fortunately, there were clear-cut "textbook" absence seizures recorded on the EEG. He had three while we were there. So, my boy is now on medication. We tried to avoid it, but I do think that this is going to help him. I do not know how many lapses in consciousness he has had over the past who-knows-how-many years. I know that if he was having seizures, they only recently became visible around 6 years of age. The good news about absence seizures is that children usually outgrow them. They can sometimes go into complex seizures, so we chose Depakote to cover both.
I don't feel bad about the medication now, because honestly the seizures scared me worse than any fears I might have about the drug. Lib has been on the medication for four days. I might just be being hopeful, but already he looks more connected and rested. The doctor and I decided that this drug is only a "bridge" until at some point we can wean him off, if we can optimize him on other supplements like milk thistle and GABA. Liberty has had paradoxical reactions to the very things that are supposed to help absence seizures such as taurine and melatonin.
I have learned, as well, over the past few months that the yeast issue in the gut will never really be cleared up completely until the metals are chelated. I have tried the DAN way and I told my doctor this, who is a DAN, that I wanted to try the "other" way, namely the Andrew Cutler protocol. He's a chemist who wrote "Amalgam Illness." Anyway, the AC protocol is "low" dose and "slow" meaning it can take a matter of years. This protocol considers the chelating agent's half-life of only 4 hours, reasoning that after 4 hours, the metals are no longer being pulled from the tissues and are free to move about and become reabsorbed. You can only chelate for around 3 days like on the weekend with an 11 day rest in between and, of course, at that point some metals will get reabsorbed. But, I see many children who actually recover on this protocol with no regressions like I have seen and witnessed in my own son. My DAN doctor is cool enough that he listened to me and told me that whatever I wanted to do he was "on board" with and "let's try it." I am so thankful that I stuck with him! His office is now located an hour and a half away from my town but he does not charge the arm and leg and fingers and toes that many of these DAN docs charge.
I hate that the the autism community is divided like this on the proper protocol for getting our children well, but the truth is no one has discovered the one right way to help children on the spectrum.
I am going on my Guidance and it is not failing me. I have faith. And that is everything at the moment. And, I do think that whatever avenue you choose, you have to feel good about it and not anxious. Here's a great quote by Abraham that I saw the other day when I was deciding to put Liberty on medication:
We were able to obtain an EEG fairly quickly. This time Liberty was not sedated but awake. He had to be put in a papoose from head to toe, but the technician was wonderful. He cried, but really he was just angry. Fortunately, there were clear-cut "textbook" absence seizures recorded on the EEG. He had three while we were there. So, my boy is now on medication. We tried to avoid it, but I do think that this is going to help him. I do not know how many lapses in consciousness he has had over the past who-knows-how-many years. I know that if he was having seizures, they only recently became visible around 6 years of age. The good news about absence seizures is that children usually outgrow them. They can sometimes go into complex seizures, so we chose Depakote to cover both.
I don't feel bad about the medication now, because honestly the seizures scared me worse than any fears I might have about the drug. Lib has been on the medication for four days. I might just be being hopeful, but already he looks more connected and rested. The doctor and I decided that this drug is only a "bridge" until at some point we can wean him off, if we can optimize him on other supplements like milk thistle and GABA. Liberty has had paradoxical reactions to the very things that are supposed to help absence seizures such as taurine and melatonin.
I have learned, as well, over the past few months that the yeast issue in the gut will never really be cleared up completely until the metals are chelated. I have tried the DAN way and I told my doctor this, who is a DAN, that I wanted to try the "other" way, namely the Andrew Cutler protocol. He's a chemist who wrote "Amalgam Illness." Anyway, the AC protocol is "low" dose and "slow" meaning it can take a matter of years. This protocol considers the chelating agent's half-life of only 4 hours, reasoning that after 4 hours, the metals are no longer being pulled from the tissues and are free to move about and become reabsorbed. You can only chelate for around 3 days like on the weekend with an 11 day rest in between and, of course, at that point some metals will get reabsorbed. But, I see many children who actually recover on this protocol with no regressions like I have seen and witnessed in my own son. My DAN doctor is cool enough that he listened to me and told me that whatever I wanted to do he was "on board" with and "let's try it." I am so thankful that I stuck with him! His office is now located an hour and a half away from my town but he does not charge the arm and leg and fingers and toes that many of these DAN docs charge.
I hate that the the autism community is divided like this on the proper protocol for getting our children well, but the truth is no one has discovered the one right way to help children on the spectrum.
I am going on my Guidance and it is not failing me. I have faith. And that is everything at the moment. And, I do think that whatever avenue you choose, you have to feel good about it and not anxious. Here's a great quote by Abraham that I saw the other day when I was deciding to put Liberty on medication:
"Is this pill really an effective pill? I this process really an effective process? Anything that causes you to allow what you desire is the process of coming into alignment. And so, we're not, in any way, validating or invalidating anything. Many offer their "dog and pony show" as being the one that works. And good for all of them. We applaud anything that assists someone in allowing the Well-being that they so much want and deserve, to flow. -- Abraham.
Will keep you posted on Liberty's progress...and mine.
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