Monday, February 18, 2008
Site change
I'm moving all my autism info to a new blog: treatingautism.wordpress.com. Please meet me there! :)
Saturday, January 26, 2008
Rimland Center (originally written 12/31/07)
Our visits to the Rimland Center this week were very successful and promising. I went in trying not to expect too much... I thought we'd walk away with a list of labs to have run on Nate and nothing more, so I was pleasantly surprised when much more than that was accomplished.
I liked Dr. Van Dyke a lot. He actually listens! to what parents say! and believes them! We spent the majority of the first appointment giving a more detailed history (does Nate do this? does he not do that? what are his specific stims? diet? physical activity?). I hadn't really thought about it before, but most of Nate's stims are visual in nature (his main one is his obsession with watching things spin). Dr. Van Dyke's own 5-year-old son with autism is the same way, he told us, and he also told us about a new type of therapy I hadn't heard of before: vision therapy using prism lenses. I'm really excited about looking further into this; I'm buying the doc's recommended book, Seeing Through New Eyes.
The doctor also supported and liked our use of enzymes and GFCF diet, since those are usually the first two things he has parents do. We talked about the next steps in Nate's treatment, and we started one the next day, at his second appointment! I was thrilled to be able to start something, to be doing and not just reading/talking.
So, this new treatment is called methylation, and it involves giving Nate a vitamin B12 shot once every three days and adding in three new supplements: DMG, taurine, and folinic acid. The shot is methyl B12 because it's in a form even more usable by the body than the usual B12 shots some people get. I had read about methylation--in fact, I had just finished with the chapter about it in Children with Starving Brains. I've done some reading since then, too (see here, here, and here), and I still don't think I can adequately explain what it is or what it does. However, it helps the majority of children with autism in some way, so it's a good treatment to try first. (And, since it really can't hurt, Dr. Van Dyke likes to try it right away rather than wait for lots of testing that may or may not tell us whether it would be beneficial. I'm all about the doing and not just talking!) This stuff is going to help at a cellular level with things like oxidation/lowering oxidative stress, because "an increased vulnerability to oxidative stress and a decreased capacity for methylation may contribute to the development and clinical manifestation of autism" (James, Cutler, Melnyk, Jernigan, Janak, Gaylor, & Neubrander, here). The benefits should also manifest themselves in behavioral improvement: more social language, more efforts at imaginary play, etc.
With one of the Rimland Center specialists' supervision, my husband gave Nate his first MB12 shot on Friday. I don't think the shot hurt him; I think he cried because he didn't want me holding him still. In the two days after the shot, Nate seemed lethargic, more stimmy, much more whiny, and less cooperative. Hmm. I'm hoping it's his body adjusting the same way it has to the other treatments we've done. Since the shot, I have noticed a couple of positive changes that definitely could be attributed to the MB12: 1) for the first time ever, Nate made up a song and sang it (it was a song about going to the airport when we were on the way there. It had only a couple of words, but it was still cool); 2) he started saying please much of the time without prompting, and today he even said, "yes, ma'am" without my having to tell him to. Cool!
In addition to the MB12, taurine, folinic acid, and DMG, we are going to start several other supplement-type things that we can buy without a prescription. These include a liquid aloe vera to help even more with inflammation and the GI tract, fish oil (not just cod liver oil) for essential fatty acids, and one or two more things I can't remember off the top of my head.
We are going to do a few labs to determine some more about Nate, including whether or not his elevated ammonia levels on a previous test are correct. Some of these labs might indicate what future treatments, like antifungals for yeast overgrowth, we'll try.
Overall, we are so encouraged and excited about all of these treatments and love the Rimland Center.
I liked Dr. Van Dyke a lot. He actually listens! to what parents say! and believes them! We spent the majority of the first appointment giving a more detailed history (does Nate do this? does he not do that? what are his specific stims? diet? physical activity?). I hadn't really thought about it before, but most of Nate's stims are visual in nature (his main one is his obsession with watching things spin). Dr. Van Dyke's own 5-year-old son with autism is the same way, he told us, and he also told us about a new type of therapy I hadn't heard of before: vision therapy using prism lenses. I'm really excited about looking further into this; I'm buying the doc's recommended book, Seeing Through New Eyes.
The doctor also supported and liked our use of enzymes and GFCF diet, since those are usually the first two things he has parents do. We talked about the next steps in Nate's treatment, and we started one the next day, at his second appointment! I was thrilled to be able to start something, to be doing and not just reading/talking.
So, this new treatment is called methylation, and it involves giving Nate a vitamin B12 shot once every three days and adding in three new supplements: DMG, taurine, and folinic acid. The shot is methyl B12 because it's in a form even more usable by the body than the usual B12 shots some people get. I had read about methylation--in fact, I had just finished with the chapter about it in Children with Starving Brains. I've done some reading since then, too (see here, here, and here), and I still don't think I can adequately explain what it is or what it does. However, it helps the majority of children with autism in some way, so it's a good treatment to try first. (And, since it really can't hurt, Dr. Van Dyke likes to try it right away rather than wait for lots of testing that may or may not tell us whether it would be beneficial. I'm all about the doing and not just talking!) This stuff is going to help at a cellular level with things like oxidation/lowering oxidative stress, because "an increased vulnerability to oxidative stress and a decreased capacity for methylation may contribute to the development and clinical manifestation of autism" (James, Cutler, Melnyk, Jernigan, Janak, Gaylor, & Neubrander, here). The benefits should also manifest themselves in behavioral improvement: more social language, more efforts at imaginary play, etc.
With one of the Rimland Center specialists' supervision, my husband gave Nate his first MB12 shot on Friday. I don't think the shot hurt him; I think he cried because he didn't want me holding him still. In the two days after the shot, Nate seemed lethargic, more stimmy, much more whiny, and less cooperative. Hmm. I'm hoping it's his body adjusting the same way it has to the other treatments we've done. Since the shot, I have noticed a couple of positive changes that definitely could be attributed to the MB12: 1) for the first time ever, Nate made up a song and sang it (it was a song about going to the airport when we were on the way there. It had only a couple of words, but it was still cool); 2) he started saying please much of the time without prompting, and today he even said, "yes, ma'am" without my having to tell him to. Cool!
In addition to the MB12, taurine, folinic acid, and DMG, we are going to start several other supplement-type things that we can buy without a prescription. These include a liquid aloe vera to help even more with inflammation and the GI tract, fish oil (not just cod liver oil) for essential fatty acids, and one or two more things I can't remember off the top of my head.
We are going to do a few labs to determine some more about Nate, including whether or not his elevated ammonia levels on a previous test are correct. Some of these labs might indicate what future treatments, like antifungals for yeast overgrowth, we'll try.
Overall, we are so encouraged and excited about all of these treatments and love the Rimland Center.
Friday, January 25, 2008
Starting the diet (originally written 11/27/08)
Yesterday I went to Mother's Market and bought lots of gluten-free/casein-free-friendly items, like gluten-free (GF) all purpose baking mix, white rice flour, GF cereal, and casein-free (CF) vanilla rice milk. Today was Nate's first full GFCF day. It went well until tonight, when we were over at Ray and Colleen's (I bring the children over there and Colleen watches them while I teach my flute lessons) and everyone else had pizza (pretty much Nate's favorite food). Poor Nate didn't understand why I wouldn't let him have any; instead he had a GFCF waffle, baby food fruit (he still eats these), and popcorn. He got over the pizza thing once we put it away and everyone was done.
It's interesting that he has been asking for cookies and crackers all day and then rrrreally wanted the pizza tonight. That seems to confirm the idea that his body is addicted to those things.
We will continue doing the enzymes with Nate, but since we'll be doing the diet too, I won't have to be so strict about enzymes with every bite he eats. I'm wondering if it might also work the other way around--that I might not have to be so strict with the diet since he's using enzymes. I'll have to ask about that.
Here are some sites I've found helpful in this very new venture:
Information on flour alternatives - what each kind of flour is good for, substitutes to use for gluten (which is needed to make foods stay together and have a good texture)
Recipes and meal planning ideas - the chicken fingers look good.
Yummy cookie recipe - this blog has several good-looking recipes, many GFCF.
I'll add more as I find them. :)
12/3/07 Wow, this girl has a lot of great information (includes casein-free too):Cooking & Baking Gluten-Free: Tips from a Gluten-Free Goddess
2008 update
I often find myself on the "unacceptable" list on GFCFdiet.com. It has helped the most!
I am so glad we are doing this diet and find that, in some ways, it is easier than doing enzymes. (We are still doing enzymes, too.) If someone else watches Nate or we go somewhere, I don't have to worry about instructing on giving enzymes; I can just send appropriate food along with him.
It's interesting that he has been asking for cookies and crackers all day and then rrrreally wanted the pizza tonight. That seems to confirm the idea that his body is addicted to those things.
We will continue doing the enzymes with Nate, but since we'll be doing the diet too, I won't have to be so strict about enzymes with every bite he eats. I'm wondering if it might also work the other way around--that I might not have to be so strict with the diet since he's using enzymes. I'll have to ask about that.
Here are some sites I've found helpful in this very new venture:
Information on flour alternatives - what each kind of flour is good for, substitutes to use for gluten (which is needed to make foods stay together and have a good texture)
Recipes and meal planning ideas - the chicken fingers look good.
Yummy cookie recipe - this blog has several good-looking recipes, many GFCF.
I'll add more as I find them. :)
12/3/07 Wow, this girl has a lot of great information (includes casein-free too):Cooking & Baking Gluten-Free: Tips from a Gluten-Free Goddess
2008 update
I often find myself on the "unacceptable" list on GFCFdiet.com. It has helped the most!
I am so glad we are doing this diet and find that, in some ways, it is easier than doing enzymes. (We are still doing enzymes, too.) If someone else watches Nate or we go somewhere, I don't have to worry about instructing on giving enzymes; I can just send appropriate food along with him.
Thursday, January 24, 2008
Intro to treating autism (originally written 11/21/07)
I'm no longer feeling overwhelmed by all the information out there on treating autism. But I remember what it was like starting out with Nate, feeling like there was so much to learn but nowhere to start. Here is my primer on treating autism, including books I've read and treatments we've tried. (I'm writing this as much for myself as for anyone else; I like to get all these thoughts down in writing but also want a place to point people to if they come to me asking about the things we've done for Nate. I am definitely NOT an expert on this subject, but I've been learning a lot through research and through friends and acquaintances who have been through it too.)
First, autism is treatable. It isn't just a brain thing. Mainstream/traditional treatments like behavioral therapy are really helpful and should be pursued. Alternative/biomedical treatments are also effective and should be vigorously pursued... as early as possible.
What are the treatments?
Mainstream - Many children with autism are put in behavioral therapy, like ABA (applied behavioral analysis). ABA is a play-based therapy where they work on social skills, eye contact, appropriate play with toys, imaginary play, whatever the child needs help with. Children may also be placed in occupational (for self-care skills, eating, oral motor movement, sensory issues), speech, and physical therapies.
"Alternative" - This is where the list of possibilities seems to go on and on. I use quotation marks because pediatricians and other doctors are often ill informed and don't know about or believe in these treatments, so they would think of them as alternative; however, they are working for many, many children. Because autism is tied up in many systems in the body, not just the brain, it seems logical to treat all of the affected areas, especially the ones that seem to start the chains of symptoms that lead to the ones in the brain. Many parents see results when they put their children on a special diet (like gluten-free/casein-free).* This is because children with autism don't seem to process certain foods correctly, and parts of those foods end up acting like drugs, attaching to the opioid receptors in the brain and thereby altering behavior (among other things). Along these same lines, enzymes can be used (alone or in addition to diet). Here is my post on enzymes. Also, since their bodies often don't process nutrients correctly, these children may benefit from various (and many) supplements. The first book I list in the books section has lots of information on helpful supplements, what they do, and why they are needed. Some other biomedical treatments include hyperbaric oxygen, treating for yeast overgrowth (Candida), chelation/toxin removal, and methylation (which has shown to help over 90% of patients with autism in some way! See here, here, or here).
Books
Changing the Course of Autism: A Scientific Approach for Parents and Physicians - This book changed the way I understand autism. I had read bits and pieces in other books about autism being more than just a brain thing, but Jepson's book fully lays it out. The first half is very technical and very informative, explaining what goes on inside the bodies of children with autism. He cites many, many studies and explains them in good detail. The second half spells out biomedical treatments to try. Jepson doesn't give specific dosing information, because most of the things should be under a doctor's supervision. I like that this book presents the "why" and not just the "what" for treatment.
Children with Starving Brains - Written by the grandparent of a child with autism and the founder of Autism Speaks, this book is written along similar lines as Changing the Course of Autism but is a bit more practical. I still haven't finished this book (am only 1/3 of the way through), but it is on many recommended readings lists.
Enzymes for Autism and other Neurological Conditions - This book is not particularly well written, but it details using digestive enzymes in a very practical manner. DeFelice details what enzymes are, how they work in the digestive system, how to start using them, what to expect when starting, the myriad benefits of using them, etc. It is also from this book that I found out why and how to use magnesium (in the form of epsom salt lotion).
Overcoming Autism: Finding the Answers, Strategies, and Hope That Can Transform a Child's Life - This book is written from a strictly behavioral treatment standpoint. It explains some good philosophies for how to interact with children with autism, encourage them to use language, steer them away from stims, etc. However, it was sort of depressing for me to read: I read this book early on--before Nate was talking at all, and so many of the strategies were for children who were already talking. Overall, I wouldn't say someone should read only this book, but instead read this book in addition to some of the biomedical treatment books. This can help provide a broader, comprehensive treatment picture.
Steps to take
If your child is diagnosed with autism (or you suspect it), here is what I recommend you do:
- Get a regional center/state services evaluation. Here is the Orange County CA reg center website. This will start the process of getting traditional therapy for your child through the state.
- Attend your child's therapy and learn to interact with him/her the same way the therapists do so you can continue the learning at home.
- Look into changing diet and/or adding enzymes gradually; pay attention to your child's behavior and see if you can tell a difference. (Remember to wait out the adjustment period.)
- Find a DAN! doctor. Many successful biomedical treatments (like supplementation or chelation) should be attempted under a doctor's supervision.
- Read, read, read!
- Have someone to talk to--it doesn't have to be someone who has a child with autism, but at least someone who can sympathize, lend a listening ear, and encourage.
- Remember that your child is still your precious, unique child!
Websites
Talk About Curing Autism - This Southern California-based organization's website has lots of resources for parents, including help with special diets, vaccine recommendations, support meetings, and more.
Autism Research Institute - Home of Defeat Autism Now! (DAN!), the ARI website also has many resources, including an overview and myths about autism, a recommended reading list, a video "My Child Was Just Diagnosed With Autism -- What Do I Do Tomorrow?" (under "First Steps"), and the official list of DAN! doctors.
GFCF Diet - Help with starting the gluten-free/casein-free diet.
Kirkman Labs - Supplier of many supplements, enzymes, and other products many parents use.
Houston Nutraceuticals - Where we get Nate's current enzymes, Peptizyde and Zyme Prime.
Enzymes & Autism Yahoo Group - Forum where you can ask questions about enzymes and other biomedical treatments.
Autism Speaks - Contains current news, videos, and research information.
* We still haven't put Nate on a special diet, but in anticipation of being asked to do it when we take Nate to the Rimland Center next month, I have removed straight milk. He hasn't seemed to miss it. Next will be yogurt. It will be hard to get rid of cheese since Nate has a quesadilla at least 6 times per week.
2008 update
Nate has been full GFCF since December 2007.
First, autism is treatable. It isn't just a brain thing. Mainstream/traditional treatments like behavioral therapy are really helpful and should be pursued. Alternative/biomedical treatments are also effective and should be vigorously pursued... as early as possible.
What are the treatments?
Mainstream - Many children with autism are put in behavioral therapy, like ABA (applied behavioral analysis). ABA is a play-based therapy where they work on social skills, eye contact, appropriate play with toys, imaginary play, whatever the child needs help with. Children may also be placed in occupational (for self-care skills, eating, oral motor movement, sensory issues), speech, and physical therapies.
"Alternative" - This is where the list of possibilities seems to go on and on. I use quotation marks because pediatricians and other doctors are often ill informed and don't know about or believe in these treatments, so they would think of them as alternative; however, they are working for many, many children. Because autism is tied up in many systems in the body, not just the brain, it seems logical to treat all of the affected areas, especially the ones that seem to start the chains of symptoms that lead to the ones in the brain. Many parents see results when they put their children on a special diet (like gluten-free/casein-free).* This is because children with autism don't seem to process certain foods correctly, and parts of those foods end up acting like drugs, attaching to the opioid receptors in the brain and thereby altering behavior (among other things). Along these same lines, enzymes can be used (alone or in addition to diet). Here is my post on enzymes. Also, since their bodies often don't process nutrients correctly, these children may benefit from various (and many) supplements. The first book I list in the books section has lots of information on helpful supplements, what they do, and why they are needed. Some other biomedical treatments include hyperbaric oxygen, treating for yeast overgrowth (Candida), chelation/toxin removal, and methylation (which has shown to help over 90% of patients with autism in some way! See here, here, or here).
Books
Changing the Course of Autism: A Scientific Approach for Parents and Physicians - This book changed the way I understand autism. I had read bits and pieces in other books about autism being more than just a brain thing, but Jepson's book fully lays it out. The first half is very technical and very informative, explaining what goes on inside the bodies of children with autism. He cites many, many studies and explains them in good detail. The second half spells out biomedical treatments to try. Jepson doesn't give specific dosing information, because most of the things should be under a doctor's supervision. I like that this book presents the "why" and not just the "what" for treatment.
Children with Starving Brains - Written by the grandparent of a child with autism and the founder of Autism Speaks, this book is written along similar lines as Changing the Course of Autism but is a bit more practical. I still haven't finished this book (am only 1/3 of the way through), but it is on many recommended readings lists.
Enzymes for Autism and other Neurological Conditions - This book is not particularly well written, but it details using digestive enzymes in a very practical manner. DeFelice details what enzymes are, how they work in the digestive system, how to start using them, what to expect when starting, the myriad benefits of using them, etc. It is also from this book that I found out why and how to use magnesium (in the form of epsom salt lotion).
Overcoming Autism: Finding the Answers, Strategies, and Hope That Can Transform a Child's Life - This book is written from a strictly behavioral treatment standpoint. It explains some good philosophies for how to interact with children with autism, encourage them to use language, steer them away from stims, etc. However, it was sort of depressing for me to read: I read this book early on--before Nate was talking at all, and so many of the strategies were for children who were already talking. Overall, I wouldn't say someone should read only this book, but instead read this book in addition to some of the biomedical treatment books. This can help provide a broader, comprehensive treatment picture.
Steps to take
If your child is diagnosed with autism (or you suspect it), here is what I recommend you do:
- Get a regional center/state services evaluation. Here is the Orange County CA reg center website. This will start the process of getting traditional therapy for your child through the state.
- Attend your child's therapy and learn to interact with him/her the same way the therapists do so you can continue the learning at home.
- Look into changing diet and/or adding enzymes gradually; pay attention to your child's behavior and see if you can tell a difference. (Remember to wait out the adjustment period.)
- Find a DAN! doctor. Many successful biomedical treatments (like supplementation or chelation) should be attempted under a doctor's supervision.
- Read, read, read!
- Have someone to talk to--it doesn't have to be someone who has a child with autism, but at least someone who can sympathize, lend a listening ear, and encourage.
- Remember that your child is still your precious, unique child!
Websites
Talk About Curing Autism - This Southern California-based organization's website has lots of resources for parents, including help with special diets, vaccine recommendations, support meetings, and more.
Autism Research Institute - Home of Defeat Autism Now! (DAN!), the ARI website also has many resources, including an overview and myths about autism, a recommended reading list, a video "My Child Was Just Diagnosed With Autism -- What Do I Do Tomorrow?" (under "First Steps"), and the official list of DAN! doctors.
GFCF Diet - Help with starting the gluten-free/casein-free diet.
Kirkman Labs - Supplier of many supplements, enzymes, and other products many parents use.
Houston Nutraceuticals - Where we get Nate's current enzymes, Peptizyde and Zyme Prime.
Enzymes & Autism Yahoo Group - Forum where you can ask questions about enzymes and other biomedical treatments.
Autism Speaks - Contains current news, videos, and research information.
* We still haven't put Nate on a special diet, but in anticipation of being asked to do it when we take Nate to the Rimland Center next month, I have removed straight milk. He hasn't seemed to miss it. Next will be yogurt. It will be hard to get rid of cheese since Nate has a quesadilla at least 6 times per week.
2008 update
Nate has been full GFCF since December 2007.
Wednesday, January 23, 2008
Vaccines: some things I've been learning (originally written 10/8/07)
There are those in the autism community who believe certain vaccines like the MMR caused their children's autism. I am not one of those. Nate's was not a regressive case, where he was "fine" and then, one day soon after a shot, lost skills, language, etc. Looking back, we can see signs all along in Nate's development. However, I agree with the experts (like in the book I'm currently reading, Changing the Course of Autism: A Scientific Approach for Parents and Physicians) who posit that autism is not merely a genetic disorder, but a disorder perhaps involving some genetic predispositions (in the brain? gut?) that are triggered by environmental factors that affect the gut, brain, and other areas of the body. One of those environmental triggers might be some of the ingredients in vaccines.
Some studies have found that children with autism are unable to process certain metals, like mercury and/or other vaccine ingredients, properly. Their bodies hold onto these materials, sometimes to toxic levels, which can then manifest in "autistic" behaviors. I'm being as careful as possible with Lucy's vaccinations since 1) autism tends to run in families and she may also have those "genetic predispositions" and 2) I've been finding out what's in these vaccines (a lot of junk, including aluminum, formaldehyde, and human tissue!).
Lucy got her first shot, the Hib (prevents Haemophilus influenzae type b bacteria, which causes bacterial meningitis, pneumonia, and other infections) at five months. Babies' immune systems often aren't ready for shots by two months, so we gave Lucy's body more time to develop. I'm getting her vaccinations one at a time (more spread out), so she only gets one shot at each doctor's visit, as opposed to the four or more that is standard protocol*. Also, she won't get the combination shots like the MMR; instead she'll get separate measles, separate mumps, and separate rubella shots. Here's how I plan to do all of her shots (probably not exactly to this schedule, but in this order and not any sooner than the ages listed):
- 5 months: Hib
- 6 months: DTaP
- 7 months: second series of Hib, IPV (Polio)
- 8 months: DTaP
- 9 months: third series of Hib, IPV
- 10 months: DTaP
- 15 months: measles
- 17 months: fourth series of Hib, IPV
- 27 months: rubella
- 39 months: mumps**
- 4-5 years: boosters for the measles, rubella, and mumps** shots (if possible, though, you can check for "titers" before giving boosters and may not need to give the boosters at all)
- 4 years: Hepatitis B
I haven't listed the chicken pox (varicella/varivax) vaccine because I may not get it for the children at all. I may file exemptions for both Nate and Lucy for some shots. Several states, including California, allow parents to file "philosophical exemptions." This way, they can still attend any school. FYI, California's school immunization record form has space on the back for a "personal beliefs" exemption request.
The book I've gotten most of my information from is What Your Doctor May Not Tell You About Children's Vaccinations by Stephanie Cave. I like that the author, a doctor, isn't completely anti-vaccine; she just gives a fuller picture about what's in each vaccine, possible side effects, how best to protect our children, etc.
* More information on why I'm spreading Lucy's vaccinations out and only getting one at a time: "Marcel Kinsbourne, M.D., a pediatric neurologist and research professor at the Center for Cognitive Studies at Tufts University, expressed his concerns about multiple dosing to the House Committee on Government Reform when he was asked to speak on the subject of vaccine safety. Dr. Kinsbourne told his audience that 'when several vaccines are given at the same time, they may have adverse effects that none of the individual vaccines have when they are given by themselves....' In addition to the added assault on the immune system when more than one vaccine is given, injecting several vaccines makes it virtually impossible to know which one is responsible for any adverse reactions that may occur" (Cave, 2001, pp. 33-34).
** I keep thinking of more stuff to add! Lucy might not get the mumps shots at all. The major threat of the mumps disease is male sterility. (In addition, the rubella disease is rather mild except in cases where a pregnant woman contracts it; it can kill the baby. So girls don't need the mumps vaccine as much as boys do, and boys don't need the rubella vaccine as much as girls do.)
Edited to add: The book I'm currently reading presents evidence that the main issue with the MMR is the measles portion, and even separated out, the measles vaccine has caused problems.
2008 update
I have since decided not to get any vaccinations for Lucy. She has gotten the Hib (once at 5 months and once at 9 months), so I will probably get the other two rounds of that shot for her, but nothing else right now. I'm finding more and more reasons not to put all those weird/foreign things into my baby.
Tuesday, January 22, 2008
Questions I've been pondering (originally written 7/26/07)
Where is the balance between helping Nate to be "normal" and accepting him for who he is? I am glad he is getting so many kinds of therapy and seems to be doing well with it. But is there a point where we are pushing him too much, not allowing him to be his own person?
No parent wants to hear their child has something "wrong." We want our children's lives to be easy, happy, so when we hear they have a condition that means things will be more difficult for them, it's heartbreaking. But do I really know what's going to make Nate happy when he's older, or am I projecting what I would want for him (to have friends, to do well in school, to speak eloquently, to get married and have children)?
Estee Klar-Wolfond, a mother of a child with autism and an activist, writes,
"We do not hear about research that seeks to help autistic people be the best autistic people they can be. We need to redirect our attention to merging help (with the more disabling aspects of autism) with respect (respecting the autistic person’s right to exist) and realize that there is life beyond an over-simplified 'cure.' Further, helping the more disabling aspects of autism (anxiety, sensory issues) can exist outside of a 'cure' for autism.
I urge every parent (but for those who visit this blog, I bet I’m preaching to the choir), to actively seek out the alternatives and become proactive in not accepting strategies that change your child to 'appear normal' because they will ultimately be very damaging to their self-image as teenagers and adults, and we will have greater problems to contend with later."
I don't necessarily agree completely with the author (e.g., "self image" and self esteem often encourage us to look inside ourselves for our identity, when really our identity is in Christ), but she did make me think. I don't want Nate to think we believe there's something wrong with who he is. He does need therapy, because we want him to be able to communicate effectively and function in the world. But beyond his learning to talk and at least identify (if not understand) social mores, I don't want to push him too much. (But what is too much? I don't want to waste his most formative years when therapy and behavior "modification" and discipline and proactive parenting have the most impact! I don't want to say, "Nate is just going to be this way," just because it's easier not to take action. As you can see, I haven't worked this all out in my head, which is why this post is titled, "Questions.")
I guess what I really need to keep my focus on is fostering Nate's spiritual growth. I want him to become a believer in Christ, and I want him to be happy, however that happens. I want him to know we love him no matter what, that we enjoy his personality and want him to pursue his interests.
No parent wants to hear their child has something "wrong." We want our children's lives to be easy, happy, so when we hear they have a condition that means things will be more difficult for them, it's heartbreaking. But do I really know what's going to make Nate happy when he's older, or am I projecting what I would want for him (to have friends, to do well in school, to speak eloquently, to get married and have children)?
Estee Klar-Wolfond, a mother of a child with autism and an activist, writes,
"We do not hear about research that seeks to help autistic people be the best autistic people they can be. We need to redirect our attention to merging help (with the more disabling aspects of autism) with respect (respecting the autistic person’s right to exist) and realize that there is life beyond an over-simplified 'cure.' Further, helping the more disabling aspects of autism (anxiety, sensory issues) can exist outside of a 'cure' for autism.
I urge every parent (but for those who visit this blog, I bet I’m preaching to the choir), to actively seek out the alternatives and become proactive in not accepting strategies that change your child to 'appear normal' because they will ultimately be very damaging to their self-image as teenagers and adults, and we will have greater problems to contend with later."
I don't necessarily agree completely with the author (e.g., "self image" and self esteem often encourage us to look inside ourselves for our identity, when really our identity is in Christ), but she did make me think. I don't want Nate to think we believe there's something wrong with who he is. He does need therapy, because we want him to be able to communicate effectively and function in the world. But beyond his learning to talk and at least identify (if not understand) social mores, I don't want to push him too much. (But what is too much? I don't want to waste his most formative years when therapy and behavior "modification" and discipline and proactive parenting have the most impact! I don't want to say, "Nate is just going to be this way," just because it's easier not to take action. As you can see, I haven't worked this all out in my head, which is why this post is titled, "Questions.")
I guess what I really need to keep my focus on is fostering Nate's spiritual growth. I want him to become a believer in Christ, and I want him to be happy, however that happens. I want him to know we love him no matter what, that we enjoy his personality and want him to pursue his interests.
Monday, January 21, 2008
Enzymes (originally written 5/22/07)
I finished reading Enzymes for Autism over the weekend and ordered two types of enzymes for Nate last night. I am really excited about the possibility that these are going to help him a lot.
Here is a basic rundown of how I understand enzymes. Enzymes are catalysts in our bodies, and one thing they do is aid in digestion by breaking foods down. Our bodies make them, and raw foods contain them too. There is a trend that many (most?) people with autism and similar conditions also have digestive/gut issues. DeFelice writes, "This may be due to a real unidentified biological issue which is manifesting in problematic behavior." Because of these gut issues, many people with autism are put on a gluten- and casein-free diet (no wheat or dairy), and this seems to help when followed 100% (though strict adherence to the diet is very difficult, as many, many items contain gluten). However, what if, instead of removing food after food, you instead supply the person's body with the enzymes it needs to break down gluten, casein, and the other foods that have caused problems?
DeFelice found that a large majority of people (over 85%) with autism/PDD who began taking enzymes and participated in her study saw a marked improvement in/disappearance of "autistic" behavior: increased eye contact, increased language, increase in foods tolerated and foods accepted by child's choice, improved transitioning (changing activities/unexpected change in schedule), improved socialization, increased awareness. What is the connection? How can sprinkling some enzymes on someone's food every time he/she eats lead to changes in behavior? Here's what DeFelice writes:
"A fundamental issue is the fact that there is an extensive nerve network (the enteric nervous system) running along the entire gastrointestinal tract. So anything that affects the gut directly affects the nerves. This leads to digestive enzymes having a direct impact on neurology. In addition, the largest part of the immune system in our body is in the mucosal lining on the frontlines of the gut.... Many people with neurological difficulties also have general digestive problems, leaky gut, inflammation of the gut, yeast overgrowth, or other conditions that result in insufficiently digested food and poor absorption, which enzymes may help improve. Some, not all, children with autism exhibit behavioral problems that lessen with the removal of certain foods. Enzymes help break down foods more sufficiently so they will not be in a form that is problematic or causes an immune system reaction. At the same time, they may help heal the fundamental gastrointestinal issues." (349)
DeFelice goes into much further detail in the book; she also gives practical suggestions on how to get children to take the enzymes and what to expect when starting on them. They come in capsule form but can be broken apart and sprinkled on food or in a drink. I can also open a capsule and freeze the bad-tasting enzymes into a chocolate wafer. Also, I know to expect that the first one to three weeks on enzymes might make Nate seem worse physically and behaviorally, since 1) the enzymes will be cleaning out his system and 2) "the use of enzymes that break down casein, gluten, or any other 'addictive' substance may cause a withdrawal effect [for those not already on a casein-free, gluten-free diet].... This is because of the decrease in peptides in his or her system" (347).
I ordered Peptizyde and Zyme Prime for Nate. Peptizyde is for the breakdown of proteins, which means it works directly on casein, gluten, and other "problem" foods. Zyme Prime is a "broad spectrum" enzyme product, so it contains lots of different kinds of enzymes, and it works on carbohydrates, fats, starches, and proteins.
I will be sure to report on when the enzymes come, when I start Nate on them, and if he makes any progress!
Here are some links with more information:
http://www.enzymestuff.com/
Enzymes and Autism Yahoo group - I just joined
Ten Things Every Child with Autism Wishes You Knew - PDF file
Edited to add: Every time I reread this post, I think of more things I should write about (e.g., information on why some with autism might be "addicted" to gluten and casein, more on what I read in the book about how enzymes heal the gut and thereby affect behavior). But hey, I have two kids and no more time! :)
2008 update:
We are still doing enzymes with Nate with much success. We have since added other dietary treatments into our arsenal, and I now believe enzymes are an important part of a treatment plan that includes diet change and probiotics.
Here is a basic rundown of how I understand enzymes. Enzymes are catalysts in our bodies, and one thing they do is aid in digestion by breaking foods down. Our bodies make them, and raw foods contain them too. There is a trend that many (most?) people with autism and similar conditions also have digestive/gut issues. DeFelice writes, "This may be due to a real unidentified biological issue which is manifesting in problematic behavior." Because of these gut issues, many people with autism are put on a gluten- and casein-free diet (no wheat or dairy), and this seems to help when followed 100% (though strict adherence to the diet is very difficult, as many, many items contain gluten). However, what if, instead of removing food after food, you instead supply the person's body with the enzymes it needs to break down gluten, casein, and the other foods that have caused problems?
DeFelice found that a large majority of people (over 85%) with autism/PDD who began taking enzymes and participated in her study saw a marked improvement in/disappearance of "autistic" behavior: increased eye contact, increased language, increase in foods tolerated and foods accepted by child's choice, improved transitioning (changing activities/unexpected change in schedule), improved socialization, increased awareness. What is the connection? How can sprinkling some enzymes on someone's food every time he/she eats lead to changes in behavior? Here's what DeFelice writes:
"A fundamental issue is the fact that there is an extensive nerve network (the enteric nervous system) running along the entire gastrointestinal tract. So anything that affects the gut directly affects the nerves. This leads to digestive enzymes having a direct impact on neurology. In addition, the largest part of the immune system in our body is in the mucosal lining on the frontlines of the gut.... Many people with neurological difficulties also have general digestive problems, leaky gut, inflammation of the gut, yeast overgrowth, or other conditions that result in insufficiently digested food and poor absorption, which enzymes may help improve. Some, not all, children with autism exhibit behavioral problems that lessen with the removal of certain foods. Enzymes help break down foods more sufficiently so they will not be in a form that is problematic or causes an immune system reaction. At the same time, they may help heal the fundamental gastrointestinal issues." (349)
DeFelice goes into much further detail in the book; she also gives practical suggestions on how to get children to take the enzymes and what to expect when starting on them. They come in capsule form but can be broken apart and sprinkled on food or in a drink. I can also open a capsule and freeze the bad-tasting enzymes into a chocolate wafer. Also, I know to expect that the first one to three weeks on enzymes might make Nate seem worse physically and behaviorally, since 1) the enzymes will be cleaning out his system and 2) "the use of enzymes that break down casein, gluten, or any other 'addictive' substance may cause a withdrawal effect [for those not already on a casein-free, gluten-free diet].... This is because of the decrease in peptides in his or her system" (347).
I ordered Peptizyde and Zyme Prime for Nate. Peptizyde is for the breakdown of proteins, which means it works directly on casein, gluten, and other "problem" foods. Zyme Prime is a "broad spectrum" enzyme product, so it contains lots of different kinds of enzymes, and it works on carbohydrates, fats, starches, and proteins.
I will be sure to report on when the enzymes come, when I start Nate on them, and if he makes any progress!
Here are some links with more information:
http://www.enzymestuff.com/
Enzymes and Autism Yahoo group - I just joined
Ten Things Every Child with Autism Wishes You Knew - PDF file
Edited to add: Every time I reread this post, I think of more things I should write about (e.g., information on why some with autism might be "addicted" to gluten and casein, more on what I read in the book about how enzymes heal the gut and thereby affect behavior). But hey, I have two kids and no more time! :)
2008 update:
We are still doing enzymes with Nate with much success. We have since added other dietary treatments into our arsenal, and I now believe enzymes are an important part of a treatment plan that includes diet change and probiotics.
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