Hello to you!
So summer is here. Daughter is in summer school and v-ball camp and my dear son is home driving me nuts. No, not really. Overall, he is doing pretty well.
Miracle of all miracles, I did actually take him off all his meds. He has been gluten/dairy/corn free for about 6 months now. Taking him off the meds was the next step. The doc we are working with has him on a host of natural neurotransmitter support products. Just to name a few, Dopatone, Seratone, Gabatone, and other various omegas and oils. All with the goal of getting his brain to rebuild proper neuro pathways.
The traditional medications he was taking just treat symptoms and don't support the brain in fixing itself. Something I am learning that children's brains can actually do.
I never would have thought he could be off his meds and be mostly manageable. In the beginning I thought I would die. It was hard. But about 2 weeks in things got much better.
I also got him a membership at my gym so now he goes most days and stays for hours swimming and climbing the rock wall. So far that seems to be working out pretty well.
I am also reading a book, "Disconnected Kids". It is very interesting. I would check it out if you have a child with ADHD, Autism, or other neurological disorders.
Be well!
Wednesday, June 23, 2010
Monday, May 10, 2010
Diet looking up...
I have to say, the eating thing has gotten better. He is actually eating food, sticking to the diet. There has been a time or two when he was out and about that he ate questionable things, but that will be a lifelong struggle.
Yesterday was his 13th birthday. I got to make my first gluten free/dairy free birthday cake. Check it out!
I couldn't eat it as I am on a special diet myself that involves no sugar right now. And buttercream frosting has LOTS of sugar in it. But I hear it tasted a bit like sugar cookie dough. Sounds yummy to me!
We are 3 weeks and counting til no meds. Depakote has been reduced to a level that I suspect is non therapeutic at this point. The Focalin XR we will just stop once school is over. Then it is hard core diet and natural supplementation.
Wednesday, April 7, 2010
Gluten Free status
Hi Everyone,
Been a rough couple of months in our house. We are continuing with the gluten/dairy/corn free diet for my son. It has been a real struggle given his propensity to not eat anything anyway! I have found a large portion of my recipes from Elana's Pantry. Her baked goods are especially phenomenal.
I am also continuing to mess with his medication. We tried to add Intuniv starting winter break. I have since taken him off of it. I believe it was making him angry and irritable, more depressed seeming. I have decreased his Depakote dose by half. I want him off that completely. Depakote can make the head "cloudy" and since he has been on it since age 6 (he's almost 13) I feel like we need to know if it is part of what slows down his processing. He remains on the Focalin XR but only through this school year. I hope to have him medication free this summer.
The meds are definitely impacting his desire to eat, especially the Focalin. Trying to start a new diet and having him not be hungry don't exactly work together. It is possible we will have to add some meds back in next school year, but I feel like we have reached a point where we have to start over.
He just had his 3 year special ed reevaluation, continuing to show a huge learning disability, mostly in the areas of overall speed, processing and fluency. Everything takes him 4 times as long as other kids. Been in a battle with his new school over all of this. Was about to pull him out but decided they needed to own up and take care of him, despite them being just a "charter school". So he will end the year with a para-professional/coach person. If he does ok with that, he will start next year the same way.
I'm constantly looking for suggestions on making this diet thing work for him, especially recipes, remembering they must be dairy and corn free as well. Let me know if you have any! :)
Been a rough couple of months in our house. We are continuing with the gluten/dairy/corn free diet for my son. It has been a real struggle given his propensity to not eat anything anyway! I have found a large portion of my recipes from Elana's Pantry. Her baked goods are especially phenomenal.
I am also continuing to mess with his medication. We tried to add Intuniv starting winter break. I have since taken him off of it. I believe it was making him angry and irritable, more depressed seeming. I have decreased his Depakote dose by half. I want him off that completely. Depakote can make the head "cloudy" and since he has been on it since age 6 (he's almost 13) I feel like we need to know if it is part of what slows down his processing. He remains on the Focalin XR but only through this school year. I hope to have him medication free this summer.
The meds are definitely impacting his desire to eat, especially the Focalin. Trying to start a new diet and having him not be hungry don't exactly work together. It is possible we will have to add some meds back in next school year, but I feel like we have reached a point where we have to start over.
He just had his 3 year special ed reevaluation, continuing to show a huge learning disability, mostly in the areas of overall speed, processing and fluency. Everything takes him 4 times as long as other kids. Been in a battle with his new school over all of this. Was about to pull him out but decided they needed to own up and take care of him, despite them being just a "charter school". So he will end the year with a para-professional/coach person. If he does ok with that, he will start next year the same way.
I'm constantly looking for suggestions on making this diet thing work for him, especially recipes, remembering they must be dairy and corn free as well. Let me know if you have any! :)
Tuesday, February 2, 2010
2 1/2 weeks into this diet thing
So we are into this whole gluten free/casein free thing. Overall, I can say this:
It is very time consuming.
It is very expensive (I have spent over $800 in three weeks, some of which is "start up" cost), and I am not buying premade gluten free products. I am making everything from scratch.
He is tolerating and as far as I know, has not tried to secretly cheat. Although in the last few days he is REALLY complaining about not eating cheese.
I do think he is acting better BUT, we did put him back on his Focalin because the school was so frustrated.
The doc really wants me to pull him out of school, get him off his meds, and get him eating healthy. I really don't see that happening because of the logistics of both of us working and health insurance concerns.
But, so far so good I guess. And we aren't eating out. Because where you gonna go? I took him out last night and it was really hard to find something on the menu that was allowed. Of course, with an $850 grocery bill, who can afford to go out!!
It is very time consuming.
It is very expensive (I have spent over $800 in three weeks, some of which is "start up" cost), and I am not buying premade gluten free products. I am making everything from scratch.
He is tolerating and as far as I know, has not tried to secretly cheat. Although in the last few days he is REALLY complaining about not eating cheese.
I do think he is acting better BUT, we did put him back on his Focalin because the school was so frustrated.
The doc really wants me to pull him out of school, get him off his meds, and get him eating healthy. I really don't see that happening because of the logistics of both of us working and health insurance concerns.
But, so far so good I guess. And we aren't eating out. Because where you gonna go? I took him out last night and it was really hard to find something on the menu that was allowed. Of course, with an $850 grocery bill, who can afford to go out!!
Friday, January 22, 2010
Gluten Free - Dairy Free - Med change
So we visited the chiropractic doc on Monday. No big surprise, she is having us take him completely gluten and dairy free! She explained a bunch of stuff that I can't explain but basically it boils down the fact that a thyroid doesn't function all by itself. It is only one piece of an entire system, and all of the signs are pointing to his system being all messed up.
It has been a hard week for me because I have been a cooking fool! There is a lot that goes into cooking when you are gluten and dairy free! And it is expensive. I'm buying almost no pre-prepared foods. I'm making it all from scratch using replacements like Almond Flour and Coconut oil, and grapeseed oil. I have 2 awesome cookbooks, The Gluten Free Almond Flour Cookbook and the Spunky Coconut. So far everything has been great. And best of all, he is actually eating all of it! I never expected that!
On a different note, sort of....we had a meeting at his school yesterday as things are not going well. Turns out the Intuniv all by itself is NOT helping him focus at all. AND...I discovered that I had made a mistake and the doc had wanted me to give him the Intuniv IN ADDITION to the Focalin. So I have begrudgenly made the decision to put him back on the Focalin.
The goal is to get somewhere healthy with this diet. In the meantime, he has to be able to survive at school and that is not happening in ANY way right now!
Wish us luck!
It has been a hard week for me because I have been a cooking fool! There is a lot that goes into cooking when you are gluten and dairy free! And it is expensive. I'm buying almost no pre-prepared foods. I'm making it all from scratch using replacements like Almond Flour and Coconut oil, and grapeseed oil. I have 2 awesome cookbooks, The Gluten Free Almond Flour Cookbook and the Spunky Coconut. So far everything has been great. And best of all, he is actually eating all of it! I never expected that!
On a different note, sort of....we had a meeting at his school yesterday as things are not going well. Turns out the Intuniv all by itself is NOT helping him focus at all. AND...I discovered that I had made a mistake and the doc had wanted me to give him the Intuniv IN ADDITION to the Focalin. So I have begrudgenly made the decision to put him back on the Focalin.
The goal is to get somewhere healthy with this diet. In the meantime, he has to be able to survive at school and that is not happening in ANY way right now!
Wish us luck!
Saturday, January 16, 2010
Our latest
Hi everyone,
Sorry I have been absent. This has been a hard school year, for all of us. My son is having a really hard time with 7th grade. And though I don't think we made the wrong choice sending him to the Montessori school, it is obvious they are really struggling with him.
We have changed his medication. He is still taking the Depakote, but we took him off the Focalin XR and the doc put him on Intuniv. It is a newly FDA approved non stimulant specifically for ADHD. It is basically a time release version of Tenex, for those that know what that it.
There have been some good benefits of the med switch. He is eating quite a bit. He is sleeping better, with more quality I think. I'm not sure it's any better or worse in terms of school though. His motivation is still crap, and his focus is complicated. Which brings me to the last update....
On a mother's hunch, I took him to an endocrinologist last fall. Tried to explain to him that for his entire life, I have always felt like there is just a more complicated health picture for my son than anyone has cared to look into. For example:
1. Despite the medication, or inspite of the medications, I haven't felt like his eating and growth have been normal.
2. We know he has been diagnosed with learning disabilities, but he just seems too foggy and confused. He can do grade level work, but not well. If it was just a learning disability, I think it should look and feel differently than it does. It's hard to explain.
So, the doc agreed to do some blood tests but I could tell he thought I was crazy. Well two tests later, we have discovered that his TSH, thyroid stimulating hormone, is high! There is something going on!
Now I am struggling with the idea of the traditional doctor. We are supposed to see him in Feb and I know that he will take a very traditional approach to this. And tradition has always proven ineffective for my son.
So I contacted another doctor that we see on Monday. She is actually a chiropractor of all things. But this is her specialty, figuring out what the body is doing to itself beyond what traditional medicine might say.
I just hope that if she thinks we have some real stuff to treat here that it can be done without taking forever. He might not survive 7th grade if we don't get help soon!
Sorry I have been absent. This has been a hard school year, for all of us. My son is having a really hard time with 7th grade. And though I don't think we made the wrong choice sending him to the Montessori school, it is obvious they are really struggling with him.
We have changed his medication. He is still taking the Depakote, but we took him off the Focalin XR and the doc put him on Intuniv. It is a newly FDA approved non stimulant specifically for ADHD. It is basically a time release version of Tenex, for those that know what that it.
There have been some good benefits of the med switch. He is eating quite a bit. He is sleeping better, with more quality I think. I'm not sure it's any better or worse in terms of school though. His motivation is still crap, and his focus is complicated. Which brings me to the last update....
On a mother's hunch, I took him to an endocrinologist last fall. Tried to explain to him that for his entire life, I have always felt like there is just a more complicated health picture for my son than anyone has cared to look into. For example:
1. Despite the medication, or inspite of the medications, I haven't felt like his eating and growth have been normal.
2. We know he has been diagnosed with learning disabilities, but he just seems too foggy and confused. He can do grade level work, but not well. If it was just a learning disability, I think it should look and feel differently than it does. It's hard to explain.
So, the doc agreed to do some blood tests but I could tell he thought I was crazy. Well two tests later, we have discovered that his TSH, thyroid stimulating hormone, is high! There is something going on!
Now I am struggling with the idea of the traditional doctor. We are supposed to see him in Feb and I know that he will take a very traditional approach to this. And tradition has always proven ineffective for my son.
So I contacted another doctor that we see on Monday. She is actually a chiropractor of all things. But this is her specialty, figuring out what the body is doing to itself beyond what traditional medicine might say.
I just hope that if she thinks we have some real stuff to treat here that it can be done without taking forever. He might not survive 7th grade if we don't get help soon!
Monday, November 2, 2009
sorry to be gone
Hey there! Sorry to be absent. Have been so busy. Back to school and we have already had the flu, strep, bronchitis, a hernia surgery and other various ailments! I've already had to take 11 sick days taking care of everyone! I'm exhausted! And currently fighting my own cold.
My last post was more complaining about homework. So I thought I would update everyone on how that is going. I basically gave in, or up, or however you want to look at it. I finally made a phone call to one of my son's teachers and let her know what a struggle we were having. I needed her to hear and understand that part of what I was struggling with was forcing and fighting with him to get stuff done so that the other teachers would not think I wasn't doing my part. She reassured me that the teachers would actually have more respect for me if I did let go and let him fail on his own.
They want him to do this on his own. They want him to fall all the way down, so they can build him back up before high school. I was so relieved to hear this. To be told I would not be judged as a bad parent if let him come to school with nothing done.
So this is what we are doing now. I remind him what time it is, frequently through out the evening. But getting started is his responsibility. And finishing is his responsibility
He's been in trouble a few times. Had to deal with consequences at school. But we have fought MUCH less than before. So we go.......
My last post was more complaining about homework. So I thought I would update everyone on how that is going. I basically gave in, or up, or however you want to look at it. I finally made a phone call to one of my son's teachers and let her know what a struggle we were having. I needed her to hear and understand that part of what I was struggling with was forcing and fighting with him to get stuff done so that the other teachers would not think I wasn't doing my part. She reassured me that the teachers would actually have more respect for me if I did let go and let him fail on his own.
They want him to do this on his own. They want him to fall all the way down, so they can build him back up before high school. I was so relieved to hear this. To be told I would not be judged as a bad parent if let him come to school with nothing done.
So this is what we are doing now. I remind him what time it is, frequently through out the evening. But getting started is his responsibility. And finishing is his responsibility
He's been in trouble a few times. Had to deal with consequences at school. But we have fought MUCH less than before. So we go.......
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