Spring DAN! 2009

So i’ve been MIA a lot longer than I hoped. Since the last time  I wrote I went to the most incredible conference of my life, DAN!. It was April 16-19th and it truly changed my life and outlook on this process. I think every parent with a child on the spectrum would benefit from attending these conferences. If you can’t go in October, check out their website www.defeatautismnow.com. I was able to meet Dr. Kenneth Bock, Dr. Andrew Levinson and SO many doctors whose books I’ve read and really benefitted from. Check out Dr. Andrew Levinson’s website www.vitalitywellness.com for some fantastic meditation ideas for parents and kids. More posts to come today.

My path to Wellness for RD…

In a path for my wellness for RD, I began putting together a list of all the things I am doing to help him get better:

Gluten Free/Casein Free Diet

Zeolyte Drops

Probiotic

Digestive Enzyme

Brain Child Nutritionals Spectrum Support Pak II Vitamins (which includes: Mixed Carotenoids, Vitamin C, Vitamin D3, Vitamin E, Vitamin B-1, Vitamin B-2, Vitamin B3, Vitamin B-6, Folinic Acid, Biotin, Vitamin B12, Vitamin B-5, Choline, Inositol, Bioflavonoids, TMB, DMAE & N-Acetyl Cyateine.

Brain Child Nutritionals Minerals (which includes: Calcium D-Glucarate, Magnesium, Zinc, Selenium, Manganese, Chromium, Molybdenum, Potassium and Methlysulfonymenthane.)

Cod Liver Oil

Epsom Salt Baths

 Athia Toxin Removal Cream.

His reflux has improved, but his tantrums are the same, he eats little and has to be by my side. Maybe because he thinks I have all the answers. The truth is I don’t. I’m frantically researching and trying ultimately not to dissapoint him or myself. I want so badly for him to get better. Maybe it will make me better and yet I am realizing he needs Speech therapy and so does LW…his brother. I think I am destined to have to kids on the spectrum and or a Aspie Son and an ADHD son. A crystal and indigo child by some people’s interpretation. Now to many that sounds like some sort of liberal bullcrap, which I have to say sometimes enters my mind. I’m not a hippy or some misguided person but sometimes I find comfort in things even in they aren’t true. Maybe its my way of getting through things and that isn’t neccessarily that’s bad.

I find that Autism is like a rollercoaster. I’m on this ride that makes me sick sometimes and scares the crap out of me. I enter into dark tunnels with sounds that enter my ears but sights I can’t see. By the time I let my fear subside and try to tackle the problem I’m out of the tunnel and back up a hill headed downwards to another scary turn. I think I see the station and I’m headed that direction when it twists and turns me upside down. Maybe its cheesy but it’s exactly the journey that is Autism. I feel that I lose a bit of myself with each turn and I wonder if the woman I be will ever return. I don’t blame my son, he is a joy, but I am beginning to wonder why. Why so many parents have to go through this hell with their kids, why they struggle, go into financial ruin, have little relationship left to share together, have to ignore their other children to save the one who needs the most help, and yet are left with the thought that things might never get better. I’m a spirtual person but sometimes I wonder why this happened. What God is telling me and how I should go forward. I guess only time will tell….but time is painful and leaves scars that aren’t quick to heal. I’m not sure how much healthy skin I have left to scar. That’s what scares me most.

Louder Than Words & Mother Warriors

I read both of Jenny McCarthy’s books and I’m very greatful for having the chance to read them. They made me feel like i’m not alone in the world and also made me sad. But these books are empowering. I think there is something to be said for a generation of women who fight the system to save their kids. I’m fists up to the belief that she is correct that this generation of mothers will pave the way for other moms. I’m working each day trying not to drive myself nuts but its not always easy. I want him to have a good day and sometimes it just hurts my heart. I would really suggest reading these books, its a great insight into the world of Autism from the biomed parents perspective. I know not all ASD parents are biomed but I think its worth reading about other parents struggles because it can help you clarify your own sometimes. Also I think its good to be informed. I wasn’t a biomed mom and now I am, I think you have to walk a lifetime in someones shoes to try and understand why they do things but I’m really not a judgemental mom either way. I hope this blog just helps others out and maybe me in the process…

Withdrawl, Stimming and ASD

I’ve been truly pleased with the GF/CF diet. It gave Reese a break from the terrible belly pain and me a much needed break from the reality that is Autism. In the meantime, I sort of held all my eggs in one basket. Hoping and praying that this would be the answer, truly it’s a piece of the puzzle but its not the whole puzzle. Its helped him so much with his reflux and his belly pain has decreased but not gone away completely. He does tell me every now and again that his belly hurts but I think the problem is actually related to the fact that he just doesn’t eat enough, he’s still afraid to eat and he can’t go the bathroom for days. He is on a toxin removal that helps slowly remove toxins but its not enough. His body is more seriously affected than I had originally thought. It makes my stomach ache thinking about how much we have changed and how much further we have to go. Reese is doing a great job and I’m just so proud of him.

Stimming is really making me feel crazy somedays. We were on vacation and he just couldn’t stop flapping and saying the same thing over and over again, or acting like the tasmanian devil. He would come back later and say sorry and then go right back and do it all over again. I felt so bad for him when it would happen and then all of the sudden i’d just get so angry this was happening. I knew part of it was withdrawl but also his little body is changing and reacting to all these new things he was getting. Sometimes you question whether what you are doing is right or if you are just imagining things. This was one of these moments. I upped his Zeolyte drops and he went the bathroom. He seemed to feel better and even act a little better. I was surprised at how correct I really was and how much the gut and brain connect.

Just like Jenny McCarthy said I feel like i’m getting a degree from the University of Google, Barnes and Noble, my DAN dr. and my ASD Angel Mommy. Its empowering but also sad. I like every mom with a child on the AS don’t want this degree, we’d rather be blindly ignorant with children who are happy, healthy and not in need of being saved. But that’s not the card I was dealt. A lot of things have happened to me in my life but the most valuable to me has been being Reese and Logan’s mom. In the words of Rachel Coleman, “you’ve taught me more in your lifetime than I’ve learned in mine.” So maybe, I’m meant for something too. Meant to help others with their pain or something, but I’m going to try and be as positive as I can for myself but also for my family.

GFCF Safe Halloween Candy

As a mom with a child on the GFCF diet I was wondering what sort of Candy my son could eat for Halloween.

Disclaimer: Be advised this list is based off people’s research but NOTHING replaces your own eyes! Please double check all labels as we cannot be held responsible for individual child’s reactions to certain candies or manufacturing changes. Always check yourself to be sure. This DOES NOT replace medical advice, it is simply a list that a few moms have put together to aid moms in Halloween Candy Shopping. With that said, take a peak at this list!

Smarties by CeCe (NOT Nestle Smarties, those are NOT GFCF)

Starbursts

Skittles

Enjoy Life Chocolate Chips

Haribo Gold-Bear Minis (a lot of Gummy Bears and Gummy Worms are OK, check the label)

Divvies Dark Chocolate Bars

Check out www.choclat.com  (we ordered chocolate covered raisins, peanut butter cups from them that are GFCF safe. They even make these on a dedicated line.

Dubble Bubble Original Bubble Gum

Chocolate Beans (like M&M’s) by Whizzers www.allergygrocer.com

Sweet Tarts by Nestle

Spree Chewy Candy by Nestle

Regular Spree Candy by Nestle

Gobstoppers by Willy Wonka Candy Factory Nestle

Bottle Caps by Willy Wonka Candy Factory Nestle

Pixy Stix by Willy Wonka Candy Factory Nestle

Nerds by Willy Wonka Candy Factory Nestle

Runts by Willy Wonka Candy Factory Nestle

Charms Pops by Charms CompanyDumdum lollypops

 

 

There are others as well, if you are questioning a candy don’t hesitiate to contact the manufacturer. Tell them that the accuracy of the information is VERY important.

GFCF is my new best friend…

Reese has ASKED for Raisins, Hot Dogs and tried Beef Stew today. I couldn’t be more proud of him and how hard he is working. His circles under his eyes are slowly getting better and he took his probiotic and went to the bathroom soon after. He is on his way to Gastro healing and I couldn’t be happier.

At the same time I have this underlying anger that this took so long. That my pediatrician doesn’t believe in this diet yet in 1 week my child’s reflux has DISAPPEARED! I’m just a bit disenchanted with the APA and the fact that my Gastro Doctor for Reese doesn’t believe in this diet yet I removed him from all Meds and he is clearly getting better just astounds me!

I just finished reading Mother Warriors by Jennny McCarthy, which is an outstanding book for anyone with a child on the spectrum. It gives you such insight in to other parents belief’s and the courage they took to heal their children. That book was truly fantastic and I’m so happy I read it.

I hope this blog helps someone considering the diet and makes them consider going that extra step. Its worth every minute.

Gluten Free Casein Free Soap

So I was on www.generationrescue.com and I saw an add for Kirman labs because it is a gluten free product. I was thrilled BUT then I saw it contains Lavender Oils which is the leading cause of Preubertal Gynecomastia (Kid/Male Breasts)! So I did some more research and found www.GFSoap.com and all their products are Fragrance Free, Gluten Free, Casein Free, Corn Free, Soy Free, Dye Free and Peanut Free! 

They have Bars of Soap, Hand Soap, Shampoo, Conditioner, Lip Balm, Massage Oil, Body Butter, and more. Its a great way to get rid of all of your gluten loaded soaps in the home. They even have travel soaps.  Remember, Gluten can be absorbed through more means than just through food!

No More Belly Pain…

Everynight I usually am up a few times listening to Reese’s belly, hearing the acid flow up and down knowing that its damaging his little body when he sleeps. Sometimes he wakes up in pain and sometimes he sleeps through it awaking with pain, dark circles and white skin. This morning I realized we both slept through the night. 

Since we began this GFCF diet I haven’t heard him complain of a belly ache. It seems implausible but its true. He has begun feeling and acting better. Thank God for this diet so far, i’m able to take a breath out and know even if it doesn’t fix everything he has if his Reflux gets better my world has improved 100% over. I hope that I can inspire others to try this diet. I assure you that every way it may put you out it gives you something back in peace.

GFCF Tastes Pretty Good!

For someone who loves food…and I do mean love….I have been trying most of this Gluten Free Casein Free food and I’m not dissapointed. EnvironKidz Organic makes an fantastic alternative to Kix. Their Panda Puffs look exactly like Kix and have a Peanut Butter Flavoring. My son was obsessed with Quaker Oats cereal and I must admit it was really scary to pull him off that with how dependant he is on eating it BUT he really loved it. He ate fresh organic blueberries with the cereal dry and apple juice.

My new favorite pretzels are Ener-G Wylde Pretzel Circles . They are crispy, not too salty and my son loves them. He is an INCREDIBLY picky eater so this makes me so happy. They taste exactly the same to me so I’m going to eat them too.

I even found GFCF Bagels, Pizza Crust, Grahams, Chocolate Chip Muffins, English Muffins, Chocolate Dipped Donuts, Hot Dog Buns, Cereal, Buns, Bread Crumbs, Soft White Bread and Chocoalte Sandwich Creme Cookies at KinniKinnick Foods Inc Now while I don’t want my son eating all this stuff all the time I do want him to still be a kid and have these once in a while when he wants them. Feeling left out as a child is a horrible feeling, ontop of all that he’s feeling I just want him to have some fun sometimes.

Screaming on the inside…

As my first post on Embracing Aspergers which i will lovingly refer to as EA i’m going to be a bit selfish and talk about myself. My son was diagnosed with Asperger’s Syndrome in May 2008. He struggles with GI issues, Reflux, Esophogeal Spasms, Belly Pain, Frequent Constipation, Poor Eating, Lack of Sleep, Aggitation, Hunger, Tantrums, Petit Mal Seizures, etc. I could go on but I think you get the picture. We started going to a CHOP GI Doc who switched Reese from Zantac to Prevacid with no real change. We also went to a CHOP PEDS Neurologist who said she didn’t think Reese was having seizures. Low and behold i forced an EEG on this woman and it came back abnormal. Both doctors said that there was pretty much nothing we could do. So I began to research. Painstaking facts and broken hearts poured on a page have filled my nights with tears and sadness but I keep on.

So unexpectedly I met this mom at Social Skills who woke me up and frankly shook me up. She in many ways will now be my ASD mommy angel. She was the first one to introduce biomedical treatments, GFCF diet, oils, suppliments and more importantly DAN doctors (Defeat Autism Now! Doctor) She gave me the name of her DAN doctor. I jumped in the car and called that DAN Dr. right away but he was booked and his first opening wasn’t until January! So I took it and asked to be on their cancelation list. Luckily I bought Jenny McCarthy’s book Mother Warriors and I looked to see if she had a website with further information. I found the site Generation Rescue which then led me to a full list of DAN Dr’s and I found one 3 minutes away who had an opening THAT day at 4:00pm! So my husband and I met with this wonderful DAN doctor who was so caring, compassionate and truly wants to help us and our son. He is an M.D. and he truly knows his stuff when it comes to Autism Spectrum Disorders, GI issues and how to help save these little guys and girls bodies. He took one look at Reese and I could see that we fit right in there. He began to tell me about how Gluten and Casein as molecules form as yeast in our children’s bodies and ultimatly their tissue is to unhealthy to excrete what healthy children do. Hearing these things made my heart shatter but it gave me the answers I knew were true. He sang the praises of Digestive Enzymes, Probiotics, Zeolytes, Cod Liver Oil, GFCF Diets and how we should proceed. The doctor looked at me and no doubt could see the pain in my eyes. He said “You know…its not your fault his malnourished. We are going to turn this around and get this child healthy. It is not your fault.” He knew I was broken and I felt for the first time someone was trying to pick up the pieces for me. I was truly greatful. He also helped my husband to understand how much pain I’m in worrying about Reese, trying to fix this at all cost and still trying to retain little bits of me. I’m truly greatful for that. I fell in love with my husband at age 17, I need him desperately but in a situation like this we often push away those we love because it hurts to much.

At the end of the session Reese went up to the Dr. and asked him to check his belly. The doctor felt his belly and said to him, “Reese does your belly hurt now?” Reese shook his head yes. The doctor asked “Does it hurt a lot or a little?”…Reese let out a sigh and said “A lot.” I closed my eyes quickly, took a deep breath in and reopened them.” The doctor said “Reese, your Mommy is going to give you some new medicines and new foods that are going to make you feel much better. All you need to do for mommy is open your mouth and let her give them to you. Can you do that for me?” Reese said “OK” and we were on our way. The path we were on abruptly turned and we went right to the grocery store. There comes a time in a mother’s life when you have trouble manifesting and communicating how bad you feel. The simple fact that the food you have been feeding your child is toxic to their system makes every nerve and bone in my body scream with agony. The need to rush to the grocery store feels like watching your son fall down and break his neck and rush him the hospital to avoid anymore damage. That was my mission, that was my task.

So we went to the Gluten Free section and I felt so lost. Lost in a see of products that could help my son that I passed each day. Wondering how I missed this, wondering if It will work. So we took home a bunch of mystery products and tried. We sat with Reese desperate to get him to eat a GFCF Peanut Butter Sandwich and Grapes. He ate the grapes but as soon as he saw the GFCF sandwich he looked at it like it was a bug. He sat there licking the peanut butter, sniffing the bread and looking back at us. Then he ran away to play with toys. We spent the next hour getting him to eat the sandwich and then he threw up. He was upset and scared as was I. After reading about the diet and reading about food therapy I knew if I quit now he would never do this. So I cleaned him up, put on a movie and brought back the rest of sandwich. To my surprise he ate most of it and went to bed. He woke up this morning and for the first time since I can remember said he felt good. So, I go onward. Onward towards GFCF free, researching, buying, making, cooking, seperating, organizing and hoping. Hoping he will make strides forward, praying he won’t regress and looking to the sky for peace. I hope this blog will give other moms and dads struggling hope. Hope that we can do this, Strength that we can go on each day with energy and Peace that this path will give us the answers we need to save our kids.