Friday, January 27, 2012

Shared custody with Special Needs Kids

Divorce with kids is hard. With kids with Special Needs?  Super fun.

For their weekends with dad, I first have to pack two full bags of supplements and special foods for their diets.

Sorry Rylie looks like a mutant in this one.  It was the only picture I took.  I think I need a new camera. Or more time to ask little kids to sit still so I can get a good picture.  : ) 

The purpose of the picture is to show the Kirkman bag full of supplements, and the pink bag full of special food for the kids (minus the spaghetti sauce and tapioca bread which Rylie has helpfully unpacked while I'm trying to pack).  We also have a suitcase which is half full of diapers and pull-ups (that you shouldn't need if you have a typical 5 1/2 year old), and a toy bin for important toys that Hayden can't live without for two days.  (Current favorites are Super Smash Brothers for Wii, Sonic, Mario, and his Angry Birds collection.)  Of course I can't pack any of this ahead of time, as it's all in use up to the morning of the day they leave.


Each of them has their own supplement chart that I have to send. For Hayden's I also track behavior and changes to his environment and routines. This is helps me figure out why huge behavior spikes occur. (Although those are pretty rare any more.)



Each box above is supposed to have a check mark by the end of the day.  It never does, but it's nice to have goals.  : )  The gray-ed out ones are things I still need to add.

Rylie's chart seems to keep getting bigger. This is three days' worth, though, not just one.



I then have to type up or jot down notes to the ex on what's new, even though it's only been 2 weeks since the last time I wrote notes.  This week's notes:

Both kids have ear infections and need Amoxicillin morning and night. Hayden gets 10 ml, Rylie gets 7 ml.  Probiotics are very important right now since they are on antibiotic, but wait an hour after Amoxicillin before giving probio, so it doesn't kill it.  Rylie should get 1/2 tsp of Kirkman twice a day, H should get 1/8 tsp of Klaire twice a day.  Please send back Rylie's probio on Sunday.  

I colored in orange the main supplements the kids should get. Hayden should get one small white scoop of the enhansa twice a day.  I tried to raise his dose and he reacted to it, so I went back to the original dose and am going to keep it consistent. He has an appointment with the DAN Dr. here on February 2nd at 2:15. I know you have school so I will let you know what we discuss. But if you want to come and are able you are welcome.  I will let you know when the next appointment is, it will probably be in about 6 months.

Hayden can now swallow pills. He can swallow the enzymes, Carnosine, folinic acid, amino acid, and s. boulardi.  He takes them one at a time. He will probably balk about it because it's not his favorite, so you may need a reward like chips or a game for afterward.  He can eat his spaghetti with a fork.

Rylie had a recheck today at Ortho Indy and the Dr. was pleased with her progress. He said she could just wear the brace for 2 hours a night, because I was worried that it was too red/cutting off circulation, or forcing her to tuck her foot under her at a weird angle.  I didn't send it this weekend because I want to show you how to put it on.  The nutritionist thinks her latest issues with eczema and constipation could be a reaction to corn, so we are supposed to stop feeding her corn for 2 weeks and see what happens. When I can afford it I will give her the $220 blood test so we can know for sure what she's allergic to.  So for now please try to limit wheat, milk, and corn for her. Although I'd rather she ate wheat and corn than nothing if that's all you have, since she lost a pound over the last 2 weeks.  The pediatrician thought it was probably from her cold/ear infection and therefore not being as hungry. The nutritionist thinks it's yeast overgrowth and an unhealthy gut that needs to get under control (through enzymes, probiotics, and limit foods she's sensitive to.)

Rylie drinks the rice milk I sent. She likes it warm, so if she won't drink it you might run hot water over the cup to warm it. She also likes juice. She likes french fries baked in the oven. The nutritionist said this is a good food to get her more calories. She likes hamburger, and sometimes she'll eat hot dogs broken up.

I am switching day cares next week.  The Rainbow daycare has had a new director for a few months. I don't trust her and don't like the way she treats the staff and kids. She is 30 minutes late every day picking Hayden up from Cornerstone. All but two of the staff have quit.  I have been looking for a new daycare for weeks and have been unable to find one that will transport to Cornerstone, but Christine finally found one. They observed Alex and Hayden today to make sure their special needs could be met, and I will meet with them Monday to discuss any special information about his care. Hopefully he and Rylie will start Wednesday if the new daycare (La Petite Academy) is able to get a second bus by then.  

Hayden is at a new building at Cornerstone. It is a large building behind the original. If you ever need to pick up or drop off, you drive around behind to the taller building. He will start getting OT services at Cornerstone next week.

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And, finally, when they come home from dad's, I of course have the fun every other divorced parent has, of doing laundry and unpacking everything.  The supplements and food are the most fun part of this, kind of like unpacking after going on a picnic.  It was fun to go on the picnic, but not so fun to come back.


If there's one trait required as an Autism parent, it's ORGANIZATION.  In all things.  Maybe that's why God gives Autistic kids to Aspie parents like me.  : )

I know, I can hear you over there, you're saying, "Geez, this chick isn't organized, look at these pictures of her apartment-- you can't see the floor!"  

I will have you know that it was clean and organized once. On December 24th, 2011. You could even see the floor.  Look, I have proof:  

 
 Although, if you've seen the Christmas post, then you know what this same room looked like later that evening. Ah well.

And now, since my dear children shared their cold with me, and just got picked up by my brother-in-law to go to their dad's... I'm going to bed, and I'm going to sleep in past 5am tomorrow! : )  Take care, friends!




Sunday, January 22, 2012

Rylie Videos

Rylie finds Hayden's lightsaber.  
(And right at the end I notice that she has half-way Houdini-ed out of her brace.)

Rylie loves sitting in little chairs, and reading books.






Rylie Updates


Miss Rylie Noelle turned one on January 10th.  She wasn't sure what to do with the birthday cake.





Where's the real food?  Are you hiding it under here?

"I'm annoyed with you people right now."

End of the party scene:  Rylie has lost her pants to some sort of incident and is trying to eat a transformer, Hayden is laughing (or yelling?) at her, and Grandpa is trying really hard how to figure out Super Smash Brothers on the Wii because Hayden told him to.



Rylie is now on all solid food, no bottles, and no milk.  She made the transition to sippy cups easily because she wants what her brother has. She is having constipation problems, possibly because of a corn allergy?  I want to do a blood test and see what's she's allergic to (as soon as I can afford the $220 test.)

She is a very good eater, and seems to be gaining body fat, but her weight at her one year appointment went down in percentile again, from 9th percentile to 5th.  The dietitian gave me some rice protein powder, suggested more probiotics to address her eczema and distended belly, and foods like potatos, potato chips, and banana protein shakes to increase her calories. She seems to like all of these, although the seeds from the bananas get caught in the holes of the sippy cup, so I'll have to see if she will drink out of a straw for that one.


Notice the trail of destruction leading up to the photo. This is Rylie's superpower.

Rylie was born with her left foot turned in. As the doctor said it would, it has gotten better, especially as she has begun trying to walk, but I noticed that she was starting to walk on her foot sideways; as she walked on it she smashed it down and was walking on the side and top of her foot. I took her to Ortho Indy a few weeks ago and the Peds doctor there took an xray, looked at her feet, and tested her reflexes.  He said I needed to do some stretches with her, to stretch out her tendon, and that she needed to wear a brace at night.  I took her to AOI and they made a cast of her foot.  I then had to go back a week later to pick up the brace.  The doctor said when he put it on her foot, "they are like little Houdini's, so expect it to come off a lot."  Yep.  Especially smarty pants Miss Rylie, who knows how to pull off the Velcro straps.  She was taking several steps before I started having her wear the brace at night, then she quit walking. My guess is that it is changing the way she walks, which was confusing her. But just today she took maybe 5 steps on 5 different occasions, so she's getting used to it. And it certainly doesn't slow her down in her adventures. It does concern me a little at night, because she usually sleeps on her stomach with her feet tucked under her. With the brace she seems really uncomfortable, and I worry that she's going to cut off her circulation some how. I've been trying to put it on as loosely as I can (keeping in mind the Houdini factor), and I've been putting one of Hayden's socks on her to help it fit better (since it is longer and will fit the length of the brace.) The doctor said to check for redness in the mornings, and it seems ok. I'm supposed to take her back to AOI this week to check the fit, so I can ask what he thinks. I'm supposed to take her back to Ortho Indy the following week. If she isn't making enough progress she'll have to wear the brace all day, not just at night.




A side note to this is the funny (to me) conversation on the phone with AOI the day after her first appointment. Keep in mind that it's still December at this point, and I was purposely scheduling as many doctors appointments as I could for the end of the year.  Woman from AOI:  "I'm calling to let you know that your insurance has denied your claim for Rylie's brace." Me: "Um... why is that?"  "They said you haven't met your deductable."  I laughed out loud.  "You filed it for 2011, right?  "Yes."  "Well between a $20,000 C-section in January and full time, $80/hr Autism school every week this year, we met our deductible back in June.  So you can call them back and tell them they'd better figure it out. They're either lying or really confused."  When I took Rylie to the next appointment to get the brace fitted she told me her supervisor had contacted the insurance again and that we owed nothing. Yeah, that's what I thought.

This is what Rylie thinks of our Healthcare system.


I went to wake up Hayden one morning and all I can see are two little feet sticking out.  Mind you he started out the night with his head on the bed by those books, and his feet pointing toward the left side of the bed.



Hayden wanted to make a clubhouse today because they made one on Yo Gabba Gabba.



 More updates to come on Hayden's nutrition plan. Two steps forward, one step back, but he is improving.




Wednesday, January 4, 2012

2011: OMG-eepers

2011... 
January 10th Rylie Noelle was born.  Small but mighty. She is wonderful. She brings me joy each day and I can't wait to get to know the beautiful person she'll become.


June 26th Jason said "If we separated I would miss the kids more than you." And so I moved out.


July 11th  The kids and I moved into a new apartment in Greenwood. Everyone wants to know why I didn't keep the house.  With all I have to do with my kids, I didn't think I would have time to mow the lawn and shovel snow, and keep that huge house clean by myself.  Besides, work, daycare and Hayden's school, and many of my friends, are on this side of town.  Staying in Mooresville just meant more commute time and less time with my kids. Plus, it was nice feeling like I was getting a fresh start.


October:  My new position at Perry Township became official. I am now a Technology Integration Specialist.  I help teachers use technology in the classroom.  And I made this website if you want to check it out:  http://websites.msdpt.k12.in.us/staffd/  I also became the head of the parent organization for Hayden's school Cornerstone.  More fun events in the works for this coming year!




Status Updates pulled from Facebook for 2011: (One very cool thing to note is how much Hayden's language skills improve by the end of the year.)

January

February


March


April


May



June

"How deep is the ocean, How high is the sky" is from a poem by Irving Berlin that I read to Jason at our wedding.  The full line is, "And if I ever lost you, how much would I cry?  How deep is the ocean, how high is the sky?"


July



August



September

Ok, so the sheep thing was in reference to a certain people who just tote along in life and let everything happen to them without doing anything about it.  Be a leader! Don't be a sheep!  : )


October


 November
 
(Obviously the rest of November's Thankful days got away from me.  I'm thankful for all of you... Does that count?)


December
 




And, something great to share.  Two emails from a coworker about the advice I gave to help her son improve his gut issues: 


 


Thanks to everyone who helped me get through 2011 alive.  Some days were hard. Some days were great. But without the support of friends and family I wouldn't have made it. Thanks to each of you for giving me encouragement and hope for better times.


2012 can only get better.  It already is:  Rylie is eating all solid food, with the exception of a bottle before nap and bed.  She is off of milk products and is gaining weight beautifully.  (Her bottles are rice milk or flax milk.)  She didn't get the Strep infection that Hayden had, which means her immune system has improved.  And unlike me and Hayden, she never met a food she didn't like. Well, except refried beans. Who puts that on the menu at a daycare, anyway?  Last night for dinner Rylie ate 2 chicken nuggets, a full serving of peas, and two servings of carrots, then snacked the rest of the evening on Kix cereal.  And with fewer bottles to prepare and clean, I got to eat dinner before 8 pm!  


My 2012 blogging goal (besides being more consistent) is to share more of the how-to of my treatment for Hayden, to help other parents save their children from Autism.  Thanks for reading, and thank you for all the support!

Here's to the new year.
: )  Sheila  (and Rylie and Hayden)


Tuesday, January 3, 2012

GFCF diet for Autism


Nutrition and Diet for Autism and Special Needs

  • why the diet works, finding a nutritionist
  • what can my child eat? He already doesn’t eat anything!
  • special diets like Gluten Free, Casein Free (GFCF) and Specific Carb (SCD)
  • vitamins, probiotics, and enzymes
  • getting started: start simple and add things as you go
  • where to shop (Target, Meijer, Kroger, Nature’s Pharm)
  • easy recipes (like pizza made with bread, sauce and “cheese” that you pop in the oven)
  • good books, blogs and websites

Diet To D0 List:

1.      Remove milk from everything your child eats. Read labels. Give it two weeks before you give up.  Milk takes 2 weeks to completely leave the digestive system.  Wheat can take up to 6 months.
2.     Make an appointment with a dietitian.
3.     Get on the waiting list for a DAN / MAPS doctor.
4.     Read!  Blogs, books, and websites will give you ideas and hope.



Gluten-Free/Casein-Free Diet
Handout For Teachers & Aides

Revised July 2009
Authors Mary Fry, Diane Gallant & Moira Giammetteo

What Is the Gluten-Free, Casein-Free (GFCF) Diet?
This diet lessens the digestive and behavioral issues sometimes found in children with autism spectrum disorder (ASD). Recent research indicates that there are children with a genetic predisposition to the disorder, which is then triggered by some as yet undetermined event: a vaccine, environmental toxin, or virus, which can cause a “leaky gut,” sometimes evidenced by resulting chronic loose stools as the child cannot properly digest these proteins. If this happens, wheat and dairy are then metabolized as opiates, entering the blood system and attaching to the brain like a drug.

It is believed that by eliminating gluten (wheat) and milk protein (casein), the gut will begin to heal and the child’s overall condition will improve somewhat. Sometimes additional factors are in play and must be addressed as well before positive change is seen (such as yeast overgrowth, as an example).

Because the diet is considered an “alternative” therapy, some school administrators, medical personnel, and others often view it with skepticism. But for some children, eliminating gluten and casein helps lessen self-stimulating behaviors, increases focus, and resolves gastro-intestinal distress. That’s why many parents swear by it.

The diet is not a cure for autism nor is it a substitute for traditional one-on-one intervention. Rather, by making the child more comfortable, the child becomes more receptive to learning (not to mention the potential positive impact in the child’s overall health, demeanor, and possible reduction in negative behaviors).

What Do the Children Eat?
Children eat a wide variety of meat, chicken, eggs, fruits, vegetables– anything that does not contain wheat gluten or milk protein (both proteins are very similar in molecular structure, and it is estimated that as high as 91% of children with autism who follow the GFCF diet can benefit). Furthermore, gluten is also found in oats, barley, rye, and most processed foods. Milk protein or casein is found in every dairy product imaginable, and is even used as a binder in canned tuna fish and lunch meats.

Many children who are on the diet will react to the slightest bit of wheat gluten or milk or soy protein. A single bite of a goldfish cracker may cause a week of bad stools, aggressive and disruptive behavior, rashes, etc. A child who "gets into" regular Play-Doh may become non-compliant, withdrawn, and regress. One bite of a graham cracker could result in severe tantrumming, head-banging, and unusually strong, aggressive behaviors, sometimes lasting several days.

What Happens When We Have Special Treats For Birthdays or Holidays?
Teachers must give the parent at least a few days notice to provide similar "special treats." Parents who are using the GF/CF diet cannot run to the store and buy cupcakes for the next day—these cupcakes have to be made from scratch using a combination of special flours that can be hard to find. Given enough notice, though, most parents can come up with substitutes. Try to make birthdays and holidays less food-oriented; substitute with crafts, carnival or piƱata type toys, music, or movement activities, instead of cookies and cupcakes.

We Have Many Hands-On Activities That Involve Food - How Should We Handle This?
Give the parent at least several days notice – the more the better – and start planning some alternate activities that do not involve food. Example: If the class is going to make a loaf of bread from scratch, ask the GF/CF parent to supply the flours for the dough.

What Should I Do If the Child Eats or Gets Into Something They Shouldn't?
Call the parents as soon as possible for instructions – be prepared to tell them what the food was, the quantity, and the time that the incident occurred. Do not wait – even though it is not a medical emergency, in a parent's mind, it may be. Some parents will come and pick up the child to give them digestive enzymes and over-the-counter medications. They may wish to rush the child home to soak in an Epsom salts bath to possibly help minimize the potential damage.

To you it may be “just a cookie,” but you wouldn’t give a diabetic child sugary candy that you know would hurt him. It is the same for the GFCF diet. The wrong foods will HURT the child, even in small amounts.

An Infraction Has Happened, What Is To Be Expected?
  • Change in behavior
  • Change in bowel movements
  • Rash on face, bottom or anywhere on the body
  • Change in sleep patterns
  • Tantrums/crying/aggression
Typically these changes occur immediately after ingestion or as long as 2-4 days after ingestion of, or exposure to, the problem food or products. In addition, milk takes 1 to 2 weeks to leave the digestive system, while gluten can take up to 6 months. This means infractions have long-term effects on the child’s health.



Going GFCFSF in 10 Weeks!
TACA also has recipes, meal plans, ingredients and substitution lists, and a guide to reading food labels.
The Steps to GFCFSF
Be Prepared! Read through the TACA website and pick a date to start the diet. Just pick a weekend and start. There is no time like the present!  This timeline is merely a suggestion.


Weeks 1-2 – Remove all casein (milk, cheese, ice cream, sour cream, etc). Do not replace them with soy. Begin calcium supplementation.
Weeks 3-4 – Remove gluten – wheat, oats, barley and rye.
Weeks 5-6 – Remove all soy. Now your child is considered to be “on the diet!”
Weeks 7-8 – Recheck everything and refine diet, if needed. Replace any personal care items such as shampoo, toothpaste, laundry soap and classroom supplies.
Weeks 9-10 – Recheck everything and refine diet, if needed. Do an inventory of sugars and carbohydrates, adjust diet to good levels.  Remember, this is a suggestion, you may not get this far this quickly, and that’s ok.

Hints for Diet Success
The first few weeks can be hard on both the child and the parents. The children typically have meltdowns and regress when the foods they are used to are removed and replaced with new things they are not used to. How long this lasts depends on a few factors – how bad their addiction to the foods is, if you replace gluten, casein or soy with foods he’s allergic to, diet sabotage, and how committed you are.

To make it easier on the parents:
·         Be committed. Know that research shows that 91% of ASD kids improve on the GFCFSF diet. The diet will only make your child healthier, and healthy is the goal after all. Yes, the diet can be confusing at first, but everything you will need is on the TACA site to help you make sense of it all. And remember this, YOU CAN DO IT!!!
·         Make sure your spouse is on board. If your spouse keeps giving your child things that are not on the diet, there is no point to doing it. The diet is 100% or nothing.
·         Do your research before you start. Know what he can and can’t have. Learn how to read labels.
·         Get a blood test for foods, IgG and IgE Foods Panel, before you begin if possible so you don’t start giving your child other foods they are allergic to.
·         Think of five of his favorite foods and find substitutes for them.
·         Go through our recipe database and pick a few things you think you can make that your child would like and get all those ingredients.
·         Use our menu plans to help you plan out your days.

To make it easier on your child:
·         Remove all his old favorites from the house so he can’t see them. If he can see them, he won’t understand why he can’t have the usual and the tantrums will be worse and last longer.
·         Don’t take him with you to the grocery store for a few months if you can help it, or be prepared for a fight in the store.
·         Some kids do better with substitutes if you put them in the old container. Get some empty (make sure they are new or very clean) containers from his old favorites and put the new things in them.
·         Don’t eat his old favorites (like pizza) in front of him for a few months.
·         Consider locking your pantry or refrigerator.
·         School – Make sure you get the diet written into his IEP and that the school staff understands the diet. It’s federal law that they must follow it. Include in your IEP that they give you a week’s notice for all food-related events so that you can supply a substitute. Supply the school with GFCFSF school supplies and a list of what he can and cannot have. See School Supplies and Essential Handout for Aides and Teachers.

Things that can cause failure:
·         Well-meaning relatives – Some relatives don’t understand the need for the diet and don’t see what harm a little cookies and milk would do. Once your child is on the diet, you will see what harm it can do though. Days of diarrhea and crying, stomach pains, headaches and tantrums will convince you but they may not see those things if they don’t live with you. Explaining it in terms of a diabetes-type medical issue usually helps. Cookies and milk are all good, unless you are allergic to them and they make you sick, then they are like poison, and they wouldn’t knowingly want to give your child poison. Some relatives will think you are crazy, some may even tell you to your face! But once your child starts making improvements, you can show them that it DOES work.
·         Schools – School staff can sink your diet if they don’t understand it. It is not optional for them to follow it, as its federal law that they must. Most parents merely supply ALL of the foods that the child will consume at school, taking the guess work out of the way for the staff. School supplies like glue, stickers, paint and playdough all need to be checked too.
·         Creating a carb-junkie – When most people begin the GFCFSF diet, they merely substitute GFCFSF versions of the things their child was addicted to – fries, chips, bread, yogurt, milk etc. The problem then becomes that there are no nutrients in those foods and they are all carbohydrates. That won’t make him healthy in the long run. Carbs also feed yeast, a recurrent problem in ASD children. The goal is to make your child healthy so while those foods are ok during the transition period, you should focus on reducing those foods as much as possible and introducing foods like meat and vegetables – things with nutrients.
·         Supplanting Calories – Giving large quantities of juice or milk substitutes, or other empty calories like potatoes can cause feeding problems. The body will pull the easiest calories it finds first and then tell the brain that it doesn’t need the rest. What that means is that a child who is drinking a lot of juice or milk substitutes (which are VERY high in sugar,) or candy, the body will take the calories from those first and then tell the brain that it’s not hungry anymore. What happens then is that a child just drinks the juice and will eat very little to no food and starts losing weight. This can create a viscous cycle and cause a feeding disorder. A child should not have more than six ounces of juice, soda or milk substitute per day. Then the body will pull the calories out of the more complex foods, along with their nutrients, which is your goal!

Calcium Supplementation
The RDA (Recommended Daily Allowance) for calcium for children is 800-1200 mg per day. Without dairy products, this is virtually impossible to meet without giving a supplement. Fortunately, calcium supplements are cheap and available in pills, liquid, chewable and powder forms.

Some GFCF flours:  Almond, pecan, and rice flours; potato starch, tapioca starch

Some Milk Substitutes
  • Almond Breeze Almond Milk (plain, vanilla and chocolate)
  • Rice Milk (many brands are available in local grocery stores, make sure they are GFCF as some aren’t) plain, vanilla, chocolate, organic, some are in the refrigerated section too.
  • Coconut Milk
Oil and Butter Substitutes
  • Coconut Oil/Butter (substitute 3/4 cup coconut oil/butter for 1 cup shortening)
  • Earth Balance Natural Buttery Spread – Soy-Free
  • Use fruit butters in place of oils in recipes

Recipes, ideas, information
 tacanow.org/tag/gfcf         TACA’s GFCF page
The book Nourishing Hope  by Julie Matthews    nourishinghope.com

Indy Resources
Nature's Pharm      www.natures-pharm.com     GFCF foods
8215 Us 31 888-0557 Open Mon-Sat 9am-8pm; Sun 12pm-5pm
www.tacanow.org/local-chapters/indiana           Noblesville TACA Meetings
www.greenbeandelivery.com           Delivery of organic produce to your house
 websites.msdpt.k12.in.us/staffd/special_needs        My Special Needs resources site for parents and teachers

Where to buy vitamins, probiotics, and enzymes
 houston-enzymes.com           Houston Enzymes
kirkmanlabs.com             Kirkman   (vitamins and supplements)

Message me through my Facebook page if you have questions! : )  Sheila

Hayden's Diet and Supplements

Hayden recently switched therapists at Cornerstone, and I typed this up so they would know why this crazy mom is sending in baggies of strange orange and black powders, and what the heck it's all for.  I thought some of you would be interested to see what I'm doing at home, and where we are with Hayden's current plan. Of course keep in mind that I'm not a nutrition expert, and feel free to correct me if any of the below information is incorrect.  For brevity I didn't list every last benefit of all the supplements, so there are many more reasons for taking them.  And, I feel there is a long way to go still to help Hayden improve, don't get me wrong.  But boy has this kid come a long way in 2 years!  Thanks for reading! : )





Hi!  I wanted to type out a few things about Hayden's diet and supplements, so that everyone is on the same page with his care.  Basically, I thought you would be interested to know about these things, and they may answer some questions you have had.  Please don’t take offense or think that I’m in some way lecturing, and also know that I’m not a nutritional expert.  I’m just sharing information about what has worked for Hayden. I would love to meet with any/all of you and answer any questions you have about Hayden’s diet and how we can make it work for him at Cornerstone (and at his eventual transition to public school).

Diet
Hayden is allergic to wheat and milk. He was given a blood test to determine this. At age three he could say only a few words at a time.  Within 8 days of taking away milk he began speaking in 4-word sentences.  You can read about his first reactions to the diet on my blog, if you are interested:  http://bit.ly/xoyabA   and read about his language and behavior before the diet (March 2010), here: http://bit.ly/z7XRLe  It is amazing to me how far he has come in just two years.  I would say a good portion of this is attributable to the GFCF diet.

(Obviously, a huge reason for his improvement has been ABA. But I think half of his improvements, and the reason he has improved so quickly, can be attributed to the GFCF diet, and to his nutritional supplements.)

If you are interested, there is an article about the diet on TACA’s page at http://bit.ly/fkPvKi : “Peer-reviewed research shows that 91% of people with Autism who were put on a strict GFCFSF diet improved.  The most common comment from parents is that their child “came out of the fog” when they started the diet.  Many parents report that their children began to talk or increased their speech with the diet as well.  Most parents report a reduction in behaviors, especially self-injury, elopement, dangerous climbing, recurrent ear infections, rashes and other medical conditions once their children are on the diet.”  

Hayden should swallow one enzyme pill with each meal. Since he can’t swallow pills yet, I empty these into his almond milk.  The enzymes help your body break down the foods you eat. They are in essence ‘eating’ your food, so when you put them in a drink they begin ‘eating’ the drink. Within 20 minutes a drink with enzymes will taste rotten and will need to be discarded.

If he complains of a tummy ache, drinking milk or juice that has some activated charcoal in it can help his tummy feel better.  Activated charcoal absorbs toxins in your body, such as foods he’s allergic to.  Also, when the probiotics attack the yeast in his body, the yeast produces die-off chemicals from the reaction, which can also make his tummy hurt.  The charcoal will help with this too.

Nutritional Supplements
You can read about supplements that have shown promise in helping autism here: http://bit.ly/zaBQ2Q

Hayden first began to see a nutritionist, and then a DAN (Defeat Autism Now) doctor.  Each has a certain focus area and goals for Hayden.  The nutritionist is especially helpful for recipe ideas and ways to get Hayden to actually eat the supplements.  The DAN doctor has a more broad knowledge of research and issues, and can request blood tests and order prescriptions.

Probiotics, Anti-fungals, and Antibiotics
One of Hayden’s biggest battles is yeast and bad bacteria overgrowth in his gut. Many ASD kids battle these and they are very difficult to get rid of.  Yeast feeds on sugars (and carbs) in your diet, which is often what most ASD kids eat.  This is why many kids do the specific-carb diet, to eat carbs that won’t feed the yeast.  I am working towards moving Hayden to this diet, but it is very complicated.

Probiotics are good bacteria to help counter the bad bacteria and yeast. Many people eat yogurt to get probiotics in their diet.  Hayden can’t eat yogurt because it’s made of milk, and it doesn’t have a high potency.  He takes dry probiotics instead.  At home I put a powder in his drinks.  At school this is the white chewable tablet you give him at lunchtime.  (The probiotics are living organisms and need to be kept cold or they will lose their potency.)  Hayden has also been on anti-fungals for his yeast overgrowth, and very strong anti-biotics for the bacteria overgrowth.  There are many problems with these drugs, including that they can make your stomach hurt, you can build up an immunity to them if you stay on them for too long, and they can have bad side effects like liver damage. Hayden is not currently on any of these drugs, although he was recently on Nystatin, which is an anti-fungal. He is currently on an anti-biotic for Strep throat. The antibiotic will kill all the good bacteria in his gut as well as the bad, causing a need for more probiotic and possibly a recurrence of Yeast overgrowth.  As you can see it is a bad cycle. I started him on a new product about a month ago called Enhansa which is also supposed to help fight yeast. It is very potent, so I’ve started with a small dose. I can also start him on a few other things once he can swallow pills, including a product called Yeast-Aid.  Signs of yeast overgrowth can include: athlete’s foot or smelly feet, bad breath, rash around his anus, sudden increase in stimming, nonsense words, and sensory seeking, and a tummy ache.

Other supplements
We always start one new supplement at a time to see what kind of affect it has on Hayden, and to make sure it doesn’t have any adverse effects. He currently takes:

Super Nu Thera:  This is what is in the cups labeled “H.D. Milk” every day. This supplement has a strong taste and he doesn’t like it very well in juice.  This is a multi-vitamin developed especially for ASD kids.


Vitamin C:  This is what is in his juice cups each day.  It has a bright, fruity flavor and tastes a bit odd if you add it to almond milk.

Calcium, since he is not drinking cow’s milk. There is some calcium in Almond milk, but not as much as he needs.

Zinc and carnosine help with language.  Zinc also helps remove copper from his body (see below) and can help with willingness to try new foods.

Epsom salts in his bath helps him remove chemicals and heavy metals from his body, and regulates him if he is constipated.  ASD kids have a hard time removing heavy metals from their bodies.  Hayden currently has lead poisoning and too much copper in his blood.

Magnesium, calming, helps with phenol intolerance.
Baking soda (calming) in his bath.
EFA powder- Omega fatty acids
Vitamin D, skin
Cholesterol, hormones and brain health
(There are about 9 more supplements I have yet to add to his diet.)

I also make several baked goods or homemade foods with protein powder, since he is such a picky eater.  If you have seen his homemade pizza, it is made with rice bread, Prego spaghetti sauce, EFA (Omegas) powder, protein powder, and GFCFSF cheese.

Other
ASD kids can also be very sensitive to many chemicals in their environment.  For Hayden I have seen him react negatively to chlorine, aluminum, food dyes, and spicy foods. Epsom salts bath and enzymes can help with this. He also takes allergy medicine at night (Zyrtec) which helps counteract any allergens he may have come in contact with during the day, and helps him sleep.

All of these supplements are powders that I have to figure out how to give him in a drink.  A few can be cooked on food, but many are not heat-tolerant and lose potency when cooked.  Once Hayden can swallow most of these supplements in pill form, my life will be much easier.  Therefore the pill-swallowing program he is on at school is hugely important to me!

I have to keep careful track of how many supplements he gets each day, as some are essential to his diet, some can be overdosed on, and all of them are quite expensive, so I don’t want him to get too much or too little of any one thing.  If you could note in his daily journal whether or not he drank the entire cup with it’s supplement, that would be hugely helpful.  I could put the actual supplement name on the cup if you think this would help with your records. I could also send multiple cups on Monday, and you could let me know when you are in need of more throughout the week.  Let me know what improvements you think could be made to our current system. :)   As you can see it’s all very complicated and I’m just trying to keep up and do the best I can!  I’m sure I’m forgetting something, so let me know what questions you have or what doesn’t make sense.

Thanks for all you do for Hayden and the kids at Cornerstone!
: )  Sheila Damron





More information on Nutrition for Autism:
http://hope-lavender.blogspot.com/2012/01/nutrition-for-autism-more-information.html