Week 130

We had a good week with Ryan.  He seems to be settling in with the bus and we have received nothing but good reports from school.  He had a spelling test this week and he spelled 9 out of 10 words correctly.  For one of the words he wrote a q instead of a p.  We are still seeing some fairly wild behavior at home but it appears that he is keeping it all in at school and letting us have it at night!

Homework is something that we are doing but it is still a struggle.  He gets frustrated quickly and wants to throw the pencil down and leave the kitchen table.  He eventually completes the work but he wastes more time complaining about doing the assignment than it takes to complete the assignment.  Writing is still something that he tries to avoid but we are working on it both here and at school.   It is getting better but it is something that we have to carefully plan and make sure he does when he is in a good mood.  We are getting better.  We were watching Julia's soccer practice and waiting for Ryan's to begin and he got a big kick out of doing his homework on a clip board outside.  Not sure if that will work again, but it worked on a busy night.

We had another crazy Saturday morning with Religion ending at 10:30 and soccer beginning at the same time.  We thought that Ryan would have a difficult time coming to soccer late but he has taken it in stride.  He is perfectly fine coming in late to the game and it is not effecting him at Religion.  He is even taking to the Religion classes extremely well.  We thought that we would have to convince/drag him to class every Saturday morning but he is excited to go.  We were also worried that he would not be able to make it for the 90 minutes.  We keep getting good reports from the two volunteer parents that are teaching the class.  And on the soccer front now Ryan only wants to play on the field that I am coaching on.  If you recall last year, he did not want to play on the field that I was coaching on and it took a great deal of convincing to get him on my field.  This past weekend the other coach and I decided that we are going to switch fields at half time to work with all of our players.  Ryan did not want to switch to the other coach and insisted that he stay with me.  Luckily another player also did not want to switch and insisted that he stay with the other coach.  It made it easy but it also reminds me that for even simple changes of schedule I still have to prep Ryan.

Ryan has made such progress from when we started this blog that I sometimes forget how difficult it was in the beginning.  We have been very lucky with Ryan and all of the progress that has made over the past few years.  The forgetting to prep him for the coaching change was one thing and another was at a Birthday party this weekend.  We have been letting Ryan cheat when he goes to birthday parties.  When it came time for cupcakes one of the young girls handed Ryan a plain cupcake!  The other cupcakes were all decorated and he was upset because the girls were asking the other party guests which one they wanted and Ryan did not get a choice.  He got upset and ran out of the room.  Dawn had to go get him, calm him down, and ask him why he was upset.  Luckily he was able to tell Dawn why he was upset and was able to return to the room and get another cupcake.

Below are some pictures of this week's events.

Ryan at a birthday party applying what he has been learning at gymnastics.

 

Ryan takes a liking to all little kids and it is great to see him interact with them and share his gentle side.

 

Ryan and Julia added their decorative talents to our anniversary cake.
10/10/12...8 years!

 

PC

April 17th, Our One Year Blog Anniversary

On Saturday, April 17th, 2010, we began this blog. It marked the day we made our first attempt at switching Ryan to a GFCF diet. I went back to reread our first few entries and I had to chuckle at us thinking that we would keep Ryan on this diet for about 3-6 months. Now look at us... one year and going strong! And so much has changed since then.


We were so frustrated back then and this diet was so new to us. We relied on other people as the experts and we were in awe at how much these folks knew. Never did I think we would one day become the experts and have families rely on us. Over the past several months we've had people ask us for advice regarding food, doctors, books, recipes, etc. So many people helped us that it feels good to pay it forward. I'd like to share one of those pay if forward stories with you.

About 3 months ago a colleague of mine entered my room after school and the first words out of her mouth were, "I've been told to come and talk to you." She looked tired and frustrated and I knew all too well what she was feeling. She went on to explain that her son has a severe milk allergy and after many frustrating months of rashes, speech issues, and behavioral issues, they have found the root of the problem. Dairy. So she now needed to change his diet. We spent time over the next several days talking about food substitutes, where to shop, which brands tasted the best, food costs, behavioral changes, and ultimately how changing to a gluten free diet may also help. I shared books and recipes with her, and over the next couple of weeks she came in to my room to report lots of exciting advances. Not only was her son receptive to many of the changes, but her other kids as well. They were making a lifestyle change as a family, and everyone was feeling good. In addition, it was getting easier and easier, (just as I had promised her that it would) to shop for these substitutes. To top it off, she began receiving good reports from her son's school with teachers writing that they have seen positive changes in him. Not all of these people knew about the change in his diet; she purposely didn't share the news just to see if anyone noticed a different. And they certainly did! This encouraged her even more! Then recently she received a report from her son's speech teacher that he is doing so well that he will most likely test out of the program; she proudly forwarded that email to me. To protect confidentiality I don't want to share all of the details of the message she received from the teacher but I do want to share with you part of the email she sent to me:

Hi Dawn,
Wanted to share my good news with you since you were so helpful in getting us to this point. I know we have far to go but it is all beginning to come together for my son. Please read the email from (*my son's*) teacher that I received today. Thank you so so much for your advice and positive motivation for me. It has meant so much.

So when did we become the "experts"? I have no idea. But I'm glad that we can pay it forward and help others. I look back to when she entered my room and I promised her that in just a couple of short months all of this would be behind her and she would feel totally comfortable with the changes she would need to make. I didn't believe it for myself a year ago, but a lot has changed in a year. For anyone considering how this diet might help their child, we encourage you to try it. Don't give up!

DC

Week 13

It's the "hurry up and wait" game.  The compounding pharmacy received Ryan's prescription back on 7/7, but didn't contact us until 7/11 to get our insurance and payment information.  And at that time they told us the medicine wouldn't ship until 7/15 and we would receive it 7/16.  So blood work done back in mid May revealing a bacterial issue, won't get treated until mid July.... amazing.  Once Ryan is on the medication for three weeks we can begin the B12 injections.  I've been reading up on the benefits of this type of injection and will share it when we get closer to "first injection" day which won't be until August.

I do have to say that the ride home from Virginia on Monday was much smoother than the ride down.  When we stopped for a break Ryan went to the bathroom without too much of an issue.  And for the most part, we were able to continue Ryan's medication schedule and we kept him on the diet all weekend.  It is definitely more difficult to travel with him on the diet since we have to make sure we have what we need and we are prepared everywhere we go.  Phil's family made it much easier; they stocked up on things that Ryan could eat, made him several GFCF meals while we were there, and made sure the restaurant we went to could accomodate his needs.  Here's a picture of Ryan and Julia at the hotel, or as Ryan called it the "show-n-tell".  They love each other so much!

During the ride home Ryan saw a little $5 train set when we stopped for a bathroom break. He was a good boy using the bathroom and we bought it for him. He didn't want to open it. He told us he was going to wait until he got home. He held it for over three more hours until we got home.  For the next several days he watched the train go round and round on its track.

For the most part he had a great Tuesday and Wednesday.  He was not as hyper and didn't fight us getting ready for school in the morning.  He even asked to try a piece of grilled zucchini that was on my plate (he didn't like it).  However, he did have a huge tantrum on Wednesday when his O/T therapist showed up.  He was playing a game on the computer and didn't want to stop.  For over 5 minutes he scratched, hit, and kicked us both as we tried to calm him down with deep pressure.  He stormed off to his room to calm down and once he did so he joined us for what turned out to be a good session.  Later that evening I told Phil about the encounter and when he questioned Ryan about it he didn't deny it.  He had a look on his face that he knew what he did was wrong, but he couldn't help it.  Without any prompting from us, he came over to me, said "I'm sorry mama" and kissed the scratches on my arm.  He had another meltdown (on a smaller scale this time) during Friday's O/T session.  This one I was able to video tape for future reference.  He just doesn't like to be told what to do and rather use the equipment "his way".
During the week I was able to read some sections from both editions of "Special Diets for Special Kids" written by Lisa Lewis, PhD.  Considering they were published back in 1998 and 2001, I was surprised how on target they were with what we know now and how much they related specifically to what we are doing with Ryan.  They are primarily recipe books for the GFCF diet, but the first edition aslo had a lot of information about supplements and biomedical treatments and testing done by DAN! doctors.  Dr. Baker is mentioned several times in the sections I read.  Also, many of the topics discussed are similar to topics found in Dr. Bock's book, but explained in a much simpler way in my opinion.  And just like many of these types of books it included a section about the author's son and his story growing up with autism.  I haven't tried any of the recipes yet, (which also seem to be very simple and straight forward), but I browsed through them and felt there is a sufficient variety.  The books were a gift to me from a friend of my mom's and I'm glad to have them.  I had heard about them several times, but never got around to purchasing them.  Now I just need to find some time to try out the recipes.

We like using our fryer.  While we know giving our kids fried foods isn't always the best choice, it is a meal they enjoy, and GFCF friendly, and we make it once a week.  Here's a picture of GFCF fries and chicken nuggets/tenders made from scratch:

Potatoes: $

GF bread crumbs: $$

Canola oil: $$$

Organic/free range chicken: $$$$

Knowing EXACTLY what you are feeding your children: priceless

At the end of the week Ryan began the Nystatin.  Luckily it had a sweet taste to it; Ryan calls it candy medicine, and he takes it without a problem.  It does have a bit of an after taste to it (I try all of his meds first before I give them to him) so we have him take a drink afterwards.  He takes this medication three times a day.  An hour after he takes the medication he is supposed to take a charcoal capsule, which is supposed to help absorb the toxins and the bacteria that the medication is attempting to detox from the body.  When I say charcoal capsule, that is exactly what it is.  It is a capsule of fine, black powder, very similar to the toner you see in a photocopy machine.  It gets all over the place if you don't open the capsule carefully.  Here's the dilemma...it is black and changes the color of whatever we mix it in.  A positive characteristic- it doesn't seem to change the food's taste/flavor.  First I attempted mustard.  I mixed about a third of the capsule with a teaspoon of mustard and it turned dark green.  I put it on his sandwich and hoped for the best.  About half way through he realized the mustard was a different color.  He inspected it for a minute, then must have realized that it still tasted the same, and he finished eating it.  But I wasn't sure if he would always have this positive reaction, and it is not always appropriate to feed him a sandwich three times a day an hour after he takes his meds.  So, next I tried his non-dairy "ice cream".  I mixed one capsule of charcoal with about 2 teaspoons of ice cream.  It turned it into what looked like a hot fudge mixture.  I re-freezed it and then sat down to pretend to eat it myself.  He immediately became interested in it and asked for his own.  I let him watch me mix a capsule into his own little cup of ice cream and he ate it with no problem.  I couldn't resist taking a picture of his charcoal covered mouth! 

DC

Week 12

Ryan had a busy week between his visit to Dr. Bock, starting up at school again, and his Occupational Therapy sessions.  Ryan's first day back to school was Tuesday, which was also the day of his Dr. Bock appointment.  There was so much to report about the day that I made a separate blog post.  We received a lot of support regarding Tuesday's post and appreciate the emails and calls.  It helps to know that there are people out there who care and are rooting for Ryan. 

I was able to meet Ryan's Occupational Therapist this week.  She treated him at our home this week, and she was able to show me some things that I can do to work with Ryan on some of the Sensory Processing issues he has.  During the first session Ryan was very upset that she was there.  He was kicking and screaming and when I tried to calm him down he bit my arm.  We ignored him for a few minutes and the therapist and I played with some of the equipment she brought and within five minutes he joined in.

A friend of mine had suggested pear sauce as a means to mix some of Ryan's supplements.  We tried it a month ago and Ryan wanted nothing to do with it.  But then over the past week he was able to tolerate the texture of applesauce.  Now that he should be avoiding apples because they are high in phenols, I thought I would try the pear sauce again.  The first time I let him have it without any meds in it.  He liked it and wanted more.  I mixed in two of his doses of supplements and Ryan ate the few spoonfuls I gave him.  But then the next day I tried it again and he must have tasted the supplements I put in (not sure which one has a taste to it) and was wary.  He would only eat it straight from the jar.  I will continue to try this new food and somehow hide some of the supplements in it a little bit at a time. 

We've also been keeping an eye out for eggs in ingredients and have been okay so far.  He has not gone "egg free" so we haven't been able to do an elimination trial yet. 

Over the weekend we drove down to Virginia for our niece's baptism.  Ryan spent over 7 hours on Saturday (mostly in the car) refusing to go to the bathroom.  He waited until we got to the hotel.  Half way through Phil tried bringing him into a bathroom and he had a meltdown.  Then on Sunday both kids were awful in church.  They couldn't sit still, and Phil ended up missing the part where our niece was baptized because both kids had to go to the bathroom.  Phil and I were the Godparents and were up on the alter for part of the ceremony and the kids kept shouting out to us and running back and forth from the pew to the alter.  It was so humiliating.  From the alter we could see the faces of the guests there for the other children getting baptized and they were constantly looking over staring at our children.  We regretted our decision to bring the kids with us. 

Some things I've learned this weekend:
1.  Ryan acted no different in the hotel on this trip than he did the last time we visited Virginia back in April, just before we started this diet. 
2.  I feel like Ryan is regressing back to pre-GFCF diet, and it is a very scary feeling.
3.  I've been reviewing Dr. Bock's book for answers, and I wish I had re-read certain sections before our visit to him last week.  It would have helped me better understand the information he was giving us.
4. Phil and I are losing our patience and the motivation we had in the beginning of this process has faded.

DC

Tuesday, July 6, 2010

Ryan began his preschool summer session on Tuesday.  The minivan "bus" picked him up at 7:45.  Phil followed the bus (without the driver knowing) all the way down the Taconic just to make sure he was a safe driver.  Of course I was the one who put Phil up to this task, but I felt better knowing that Ryan was okay and in good hands.  He returned home at 11:45; the driver said he slept the entire way. 

Tuesday was also Ryan's second scheduled visit to Dr. Bock.  I thought this appointment would be easier and less overwhelming since we knew what to expect, but I was wrong.  It was just as overwhelming, if not more.  The doctor gave us so much information about Ryan's test results that it was confusing.  I wrote down some notes, but I couldn't keep up with half of what he was saying.  It didn't help that Ryan's behavior was erratic.  It was good that the doctor was able to see a glimpse of Ryan at his worst, but it made for a stressful afternoon.  Dr. Bock commented that Ryan has behavioral issues with attention deficits.  We think this was his way to say that Ryan is ADD or ADHD, and I guess that will be the next diagnosis we receive from the neurologist.

The main purpose of the visit was to get the results from all of the bloodwork, stool and urine samples that were administered during the month of May. The test results included a list of things that Ryan is deficient in such as chromium, selenium, and sulfur.  He also told us about Ryan's high food sensitivity to eggs and moderate sensitivity to mustard.  Yeast was found under the microscope, and his membranes were high in calcium.  In addition, he has "bad bacteria" that needs to be treated with antibiotics and also a mild genetic polymorphism abnormality, whatever that means.  I didn't ask for copies of anything and will have to remember to do that for my next visit.  I'm also going to have to ask him to go through some of the results again because everything is now so muddled in my head.  I did a substandard job gathering the necessary information and was disappointed that I wasn't a better advocate.  I spent most of Tuesday night and Wednesday morning sulking for doing such a poor job.  In addition to the sulking, I went through all of Ryan's supplements and tried to organize them (and my thoughts).  I created a spreadsheet in the form of a checklist with the name of the supplement, the dose, and frequency so that we can keep track of which ones we have given him each day.  It is an overwhelming task and we're trying to introduce new supplements one at a time over 3 or 4 days in order to observe his behavior and note any changes that we see because of the supplements.   To get an idea, here is a picture of his supplements.  This doesn't include the prescription medications, B12 injections, and numbing cream that will be shipped to us during the week.

So those are the supplements that Ryan takes daily (many are twice a day).  From this visit alone he suggested 11 supplements (in addition to the 9 he is already taking).  Some are liquids but most are capsuls that have to be opened and the supplement then gets mixed into food.  Most often we mix them in mustard, ketchup, or peanut butter.  Unfortunately, we now have to cut back on the mustard because of the food sensitivity results.  In addition, we should be eliminating ketchup from his diet for two reasons: phenols and yeast.  Ryan is sensitive to foods high in phenols; the doctor believes this may be the cause of Ryan's sudden outbreaks of red cheeks and maybe some of his mood swings.  Tomatoes are on the list of foods high in phenols.  Ketchup also has vinegar in it, which could be causing the yeast that was discovered.  I'm not sure how Ryan will react to us eliminating ketchup from his diet.  While I don't feel we can totally eliminate it at this point, we can certainly reduce it.  We can make sure he uses smaller portions of it for starters.  We were fine with him using a lot of ketchup because it made it easy for us to mix his meds in it.  We're going to need to be more creative with getting the supplements worked in to his meals.  There is also an enzyme that the doctor suggested that we can give Ryan when he has foods high in phenols.  There are many foods on the phenols list that Ryan doesn't eat, but here are some of the foods that he enjoys and eats often that were on the list: apples, strawberries, pickles, grapes, oranges, bananas, chocolate, and tomatoes.  For those of you who know Ryan, you know that giving up some of these foods will be difficult.  Just when we were getting the GFCF diet under control, we now have to watch out for all of these foods, and eliminate eggs as well. 

Aside from the supplements, Dr. Bock also prescribed Nystatin and Gentamycin (I guess to rid him of the bacteria), both of which have to come from a compounding pharmacy.  On Wednesday morning I spent about an hour researching compounding pharmacies/pharmacists.  There are not many in NY and none within a short driving distance, so things will need to get shipped to me.  Once Ryan is on these prescription medications for three weeks, we can begin giving him B12 injections twice a week.  These B12 shots also need to be shipped to us from a compounding lab that is sterile and has the capability to produce the injections.  During Ryan's doctor visit I had to be trained (and pay $45 to get trained) on how to properly prepare and dispose of the needle, and how to administer the injection.  There is a process that needs to be followed and I'll be sure to give you more information about the injections once we start them.  Frankly, that entire part of the appointment was a fiasco and I don't want to relive it right now.  Dr. Bock's nurse, who has awful bedside manner, was the one doing the training.  I don't want to get into details, but I put a call in to Dr. Bock to discuss the situation with him because the way she treated Ryan was very upsetting to us.  I'm waiting for him to return my call. 

To top off the day, when we were finished with the appointment we met my parents (who had Julia), and Phil's mom at a restaurant down the road from Dr. Bock's office called Mazza Grill.  We arrived at 4:45 and it was good to have everyone together to talk about our visit.  Phil had called this restaurant in the morning to be sure that they could accomodate a child on a GF diet.  We asked if they would be able to make something like french fries and grilled chicken.  They said it wouldn't be a problem and they get visitors from Rhinebeck Health Center all of the time.  When we ordered the food we explained how Ryan's food needed to be prepared.  We did everything right, and yet everything went wrong.  The manager or owner came out to tell us that they could not accomodate a GF diet and that the fries are batter dipped and wouldn't be gluten free.  When we explained that Phil called in the morning to check, he wanted to know the name of the person we spoke with.  He was very condescending to Phil and we packed up our stuff and left.  The kids were upset because they couldn't understand why we were leaving; they were tired and cranky and their behavior from 5pm to 9pm was awful.  It was a very frustrating ride home and disappointing evening.

DC

Week 11

Ryan had a fabulous weekend with our company.  We had some very hot days during the beginning of the week and he spent a lot of time in our little three-ring pool. 

Julia wanted pastina one night and Ryan was very upset that he couldn't have any.  We made him (and ourselves) corn pasta.  But when he saw that Julia was having pastina, he left the table and went to his room to sulk.  He joined us about 10 minutes later to eat his corn pasta (and he even asked for a second helping!)  Note to self: look online for GF pastina, or take regular GF pasta and smash it to tiny pieces before cooking it.

During the middle of the week Ryan developed a rash on his torso area and legs. Poor little guy!  His pediatrician thinks the rash developed from a bout of croup he had in the beginning of the week.  We are treating it with a steroid cream (which is helping with the itchiness) and lots of Aveeno and Aquaphor to help with the eczema-like roughness. 

We headed up to my mom's house on Friday to celebrate the Fourth of July holiday weekend.  We've never taken Ryan to see live fireworks.  First and foremost, he is in bed asleep by 9pm.  Also, he is so sensitive to loud sounds that we never had the desire to keep him awake just to bring him to something that would bother him so much that we sould have to leave.  There are fireworks at the town park, and we are still debating if we will take him.  He had a great two days in the pool.  Suprisingly the chlorine, sun, and sunscreen has not irritated his rash.  The steroid seems to be working and the rash is almost cleared up.

On the food front, my parents bought a new GF cereal that Ryan LOVES.  It's organic too, and called Amazon Frosted Flakes by EnviroKidz.  The ingredients are organic corn meal, organic evaporated cane juice, and sea salt.  He's had several bowls, with his rice milk, since we've arrived.  I'm going to have to pick up a few boxes, and hopefully have no trouble finding it.  They think they purchased it in either Shop Rite or Price Chopper.  We also tried out a new "ice cream" called Purely Decadent Coconut Delight frozen dessert.  It's made with coconut milk and is super creamy.  The adults agreed that it was a tasty treat as long as you are a fan of coconut.

We'll be sure to update you on the fireworks tonight, if we decide to go, and tell you about Ryan's summer school which begins this Tuesday.  HAPPY 4TH OF JULY!

DC

Day 64

Ryan was wild today.  I don't know if it was something he ate, but his erratic behavior lasted most of the day.  At times he was defiant and violent.  He didn't want to follow a routine, and he had this non-stop energy.  In the afternoon we were able to bribe him with a lollipop to sit still so that my mom could cut his hair.  She got about 3/4 of the way through and he decided he was finished sitting there.  While I would have liked to force him to sit there, I was happy that he agreed to get his haircut and didn't want to push my luck.  If I force him, next time he may not be willing to sit there.  I figured it was more important that he trusted we would stop when he wanted us to, rather than have a perfect haircut.  Maybe we'll be surprised and tomorrow he'll let her finish the job.  My guess is it will be several days, maybe even weeks before he is a willing participant. 

Once 6pm hit he started to wind down and we were able to leave the kids at home with my parents.  Phil and I finally had a chance to go out to dinner by ourselves to celebrate his birthday.  We're a month late, but we're glad we had the chance to go.  We went for Japanese hibachi, something we both enjoy and have taken the kids to a few times.  Now that Ryan is on a GFCF diet, it doesn't seem like a possibility for all four of us to go together anymore.  Since there is gluten in soy sauce, there isn't anything on the menu we would be able to feed to Ryan, unless maybe plain white rice.

Father's Day tomorrow.  We are surprising the kids and taking them to see Toy Story 3.

DC

Day 59

Back on Day 39 I mentioned something about school lunches.  Here is a portion of the information I found according to the "Talk About Curing Autism" website.  The article is called "Must Schools Provide Casein and Gluten-free Foods If Parents Request It?" by Donna Rosinski.

"School districts must provide substitute foods at no extra charge to the family if a child is considered handicapped under Section 504 of the Rehabilitation Act of 1973.  There are certain conditions that must be met, though.  First, the nutrition goals must be written into the IEP, which then allows special education funds to cover the costs.  Also, the request must be supported by a statement signed by a licensed physician.  This statement must identify the child's handicap and explain why the handicap restricts the child's diet.  It also has to specify the major life activity affected by the handicap (it helps to relate the diet to the educational goals in the IEP).  Finally, the statement must specify the food or foods to be omitted from the child's diet, and the other foods that must be substituted."
   
If you are dealing with this situation, check out the entire article at: http://gfcf-diet.talkaboutcuringautism.org/gfcf-school-provided.htm

DC

Day 52

When we first started this blog we were focusing on the GF/CF diet.  But after 52 days we seem to have the diet down.  The fact that the medical profession thinks that this diet is one step above witch doctors is amazing to us.  We know that this diet does not work for everyone but not giving it a try or having any serious medical studies seems insane to us.  I guess if they have a study that shows that this works, then there must be a cause of Autism besides genetics.  Most parents get over the why of Autism fairly quickly.  Most people are practical and want to know what they can do now to help their child.  This diet, while difficult at first, has been a life saver for both us and our family. 

In this blog we seem to be doing more of a combination of diet and trials of having an Autistic child.  Our new trial is Occupational Therapy.  Ryan was tested in October and found to have a 12% delay.  He was re-tested in May and found to have more than two standard deviations below the mean in several areas.  Yet at our annual review our school district is telling us that since Ryan is only having OT for six weeks there is no way to show regression in skills.  This being the case, they will not authorize therapy over the summer but will pick it up in September.  To us this seems crazy.  If his lack of skills went from 12% to over 25% in six months, how does this not show regression in skills?   We know that New York State changed the rules and that school districts are now required to pay a percentage of costs for pre-school services.  This is a new rule and districts are scrambling to find ways to cut costs.  But what are the cost of these savings?  So we are now consulting an attorney and going that route.  As educators we used to wonder why special education parents were so crazed when they got to the secondary level.  Having only been a special education parent for a year, we have become those parents.  We completely understand these parents now.  Having to fight through all this bureaucratic insanity will make anyone crazy. 

We will keep you updated.

PC

Day 39

I'm so exhausted. I wanted to skip the blog tonight but I feel guilty not writing. So I'll make it short and comment on two new things today. First, I made GFCF french toast for the first time tonight and Ryan really enjoyed it. Second, I have been researching a school's responsibility to provide a special lunch for children on a particular diet. There are requirements that must first be met involving the child's doctor and the child's IEP. I'll elaborate once I have all of the information, and when I am better able to keep my eyes open. Goodnight.

DC

Day 30

Today we added a new supplement from Dr. Bock's list. This is now the 5th supplement and we have four more sitting in the shopping bag just waiting to be opened. We haven't added a new one in about a week so we figured we'd give it a try. This one is called Sugar Companion. I didn't know much about it so I looked it up and found that it is supposed to help reduce cravings for sweets. This was a big problem for Ryan before we started this diet and continues to be an issue, although it has diminished somewhat. I'm not sure how long it takes to work its way into the system but it didn't take effect today. He's been craving salty foods the past few days and that continued today. He asked for chips countless times, to the point where we gave in and let him have 2nd and 3rd helpings. It was out of control and by the afternoon we were super frustrated. He also asked several times for lollipops and cookies.

Phil's mom visited for lunch and Ryan was very talkative (he started some of the conversations) and made lots of eye contact. She noticed the recent improvements he's been making, even a few new ones after just seeing him last week for his birthday.

For dinner I made a GFCF pizza from scratch. He ate a little bit but wasn't crazy about it; the crust was bumpy looking and he said it had potatoes on it! It didn't help that Julia took one bite and made an announcement about how yucky it was. At Nature's Pantry today I found a GFCF frozen pizza and purchased it to try out. I would love to find pizza that Ryan is content with. I miss eating pizza at home, but can't bring myself to ordering it and then telling him he can't have it. Same goes with Chinese food. We used to order Chinese take out at least 2 times a month. Since we started this diet we haven't ordered out at all.

Most of the homemade pizza got wrapped up and put into the fridge and he ended up having toast before bed. We wanted him to have a full stomach before his 12 hour fast for his bloodwork. We spent time warning him about the morning and telling him that he was going to wake up, go to the doctor, and then eat breakfast. He asked if he could have cookies and we said yes. So we had him practice saying the routine aloud: wake up, go to the doctor, eat a cookie.

It was a very stressful day for me worrying about him going for bloodwork in the morning.

DC

Day 29

Today we had a good day with him and the diet with supplements. We went to a party this afternoon and he was very content to eat his food. The only thing that he really wanted was chocolate covered strawberries. But they had fresh strawberries and he was content. However, we did have to give him some more potato chips to get his mind off of the chocolate covered strawberries. He was great at the party, no meltdowns, and played great with the other kids. His behavior was excellent and he really was able to interact with others at the party. Another party that Dawn and I could enjoy without having to run after him constantly.

He is taking the supplements but we have been using OJ to help get him to take them easier. However, OJ is high in sugar and Phenols and we have to start getting him off these two. Now that we have him on the GF/CF diet, it is time to start the sugar and Phenol battle. We will keep you informed.

Today I took Ryan to the A&P (which is not a very friendly store for GF/CF products) to do a regular food shopping. It is the biggest food store that is closest to our house. We have switched to a lot of Organic products, one of those being Organic chicken. We can all now taste the difference with the chicken. There was none on the shelf so we asked the butcher. He was able to look in the back and get us a package. He asked us about the taste of the chicken and we told him that we could taste the difference, especially the kids. We also started talking about Ryan's diet since Ryan asked if this was his or Julia's chicken. As I was talking about the GF/CF diet and autism, the person behind me interrupted us and asked us if he heard us correctly that Ryan was diagnosed with Autism. He then called over what I found out to be his son and daughter-in-law and told them that this little boy was diagnosed with Autism. Which at this point Ryan said that he was not a little boy he was Ryan. This blew the couple away. They asked how old Ryan was an he responded that he was four and that he had a pirate party but not today. The asked what types of therapy was in and what medications he was taking that made such a big difference. I told them the he was granted OT, which did not start yet and that he was only on the GF/CF diet and supplements. No medicine. To say they were shocked was an understatement.

We talked some more about the Diet and they were amazed that I brought Ryan to the store and Ryan chimed in that we went to the Library first. I found out that they were visiting and that they left their son, four and a half at the house and that this was their break. Apparently their son was much farther down the spectrum then Ryan and was difficult to bring to different places. They wanted to know about what we were doing and how we found out about the diet. I told them to start with Dr. Bock's book Healing the New Childhood Epidemics, to find a DAN! doctor, and research the diet. I told them that this diet does not always work, but for us it has been a total life saver with Ryan. I shared a few stories about Ryan, how he would act, re-act, and how he would eat before we started the diet and they just nodded their head in agreement. I forgot to tell them about this blog but I hope that I gave them a good start. At the end of our 20 minute conversation (Ryan was telling me that it was time to go and getting antsy sitting in the cart) they thanked me and the mom started to cry. I wish that Dawn had been with me for she would have been such a better resource for her and a better source of comfort. I hope that I gave them what so many parents of children with Autism need: Hope.

PC

Day 28

Today we kept Ryan home because he woke up with a 101.6 fever. I stayed home with him figuring that I could get my work done. I never thought that I would say this but Ryan would not stop talking! He spoke more today then ever. When Dawn called to check on him he would get another receiver and start talking to Dawn. He would be engaging in conversation and answer all of her questions. It was unreal. Even Dawn noticed when she got home that he was talking more.

Ryan colored pictures for Dawn today and could not wait for her to get home to show her the pictures. He even asked if he could make pictures for Grandma and Nonna. These are things that he never did and we are starting to think that it is due to the new supplement Probiotic. He has been taking that for a few days and that is all we have really changed in the last few days. The diet is going so well, Ryan is not even tempted to try non-GF/CF food. We were having lunch together and he asked me for a sandwich with his bread not Daddy's. It is amazing.

Hopefully he will start to feel better and we are looking forward to the continued progress with Ryan.

PC

Day 26

Ryan turned 4 today! Many people proudly wore their Ryan Express t-shirts today. We stood out all around my school today and it was awesome to feel that kind of support!

His teachers said he enjoyed his GFCF brownies with his friends at school today. Unfortunately his cough has not improved. We took him to the pediatrician and she said it is croup and put him on a steroid medication.

Phil and I have both noticed that Ryan's memory seems improved. He is singing the words to songs that he was never able to sing before and just in general when we tell him something it doesn't go in one ear and out the other. It's nice to hear him singing songs on the way to or the way home from school!

My brother wanted to take everyone out to dinner tonight. We looked at some of the menus of local restaurants that specifically have GF menu items. We considered Uno's and Bugaboo Creek before settling on Outback Steakhouse. I was a little worried because I knew Ryan would want the french fries, but the menu specifically said that the fries are not GF. I ordered him grilled chicken and asked the waitress about the fries. She assured us that they are indeed GF because they will fry them in a separate frier and use oil designated only for GF items. So we ordered the fries (to be honest I was going to order them anyways). There was no way we were going to get him to understand why the rest of the kids were eating fries and he wasn't. All 9 of us were wearing our Ryan Express t-shirts and several employees and patrons asked us about them. I took several pictures and will post them on The Ryan Express Facebook page.

DC

Day 22

Ryan attended a birthday party today and did great in regards to food. He sat at the table and watched kids grabbing at pretzels and cheese doodles. He didn't reach out his hand at all. I could tell he wanted some, but he didn't touch them. He looked at me first and asked if it was okay for him to eat them. I told him I would give him a special snack and he was fine eating something different. That is basically what happened for lunch and birthday cake. When they were passing out the pieces of ice cream cake he announced that he wanted his special cake. I wonder if he is okay with all of this because he recognizes that it makes him feel better. Wow! I am so proud of him!

We are celebrating Ryan's birthday in conjunction with Mother's Day tomorrow (he'll be 4 on Wednesday). Our immediate family will be here to help us celebrate. I made a GFCF chocolate cake and vanilla frosting. Ryan was excited to watch me make it and is looking forward to his pirate birthday party. The cake looks like a typical birthday cake but it isn't as tall; the cake cooked on the flatter side. Now I just hope it tastes okay and everyone doesn't mind eating it. I figured on his birthday he shouldn't need to have something different from everyone else and ask for his "special" cake. We're all going to eat Ryan's cake.

DC

Day 20

Dr. Bock

Today was our appointment with Dr. Bock. Originally this appointment was for November 8th but Dawn managed to get Ryan an appointment today. I will talk about how she managed that one in another posting.

It was a crazy day but one well worth the time. The only bad part of the appointment was the fact that we had to have Ryan fast to get blood work. This never ended up happening. Now that his body is accepting the GF/CF food he has regained his appetite. So by 7:45 AM he was getting very upset telling us that he was hungry and that he wanted his special toast! The appointment lasts over 4 hours and the blood drawing does not occur until the end of the appointment. There was no way we were going to be able to keep Ryan from eating until noon.

Dr. Bock seems like a very nice man and he was impressed with the progress that Ryan has been making with the diet. We described what Ryan was like before the diet and what he was like now. Ryan did great with the appointment. He sat and played in the office as Dr. Bock went over the huge intake packet with us. We even had Dawn's parents meet us at the appointment just in case Ryan could not handle the appointment. Ryan did amazing. He watched the phone company repair a downed wire outside the building. He even waved to the worker in the cherry picker fixing the line. He was such a trooper.

Dr. Bock was also impressed with the fact that we read his book and that Dawn was able to share the progress that Ryan has made on the diet. The doctor shared with us that it is a good sign that in such a short amount of time Ryan has made such great progress. He even commented that Ryan had good eye contact! This was probably the first time that anyone has ever said that about Ryan.

After the appointment was over they handed us several test kits to collect more blood, stool, and urine to get tested. The directions are unreal and we feel completely over whelmed with all the stuff that we learned and that we have to now do to help Ryan. Finding a lab that will draw the blood needed and test for the specific items that he wants is a huge task. Dawn is still sorting though all the directions and going crazy finding a place that will do these tests and at a time that we can have Ryan fast but not have him go crazy about wanting to eat.

The last part of the appointment was going over all the supplements that they want Ryan to take. This is a huge undertaking and the directions alone will make your head spin. Take this now, this later, this with water, this with food, this twice a day, this needs to be in the frig, this can not be in the frig and the list goes on and on.

As over loaded with information as we are, we do feel much better that we are now under the care of a doctor and not his book. While the book was a huge help and a great resource, having a human being talking to us and a plan of action is so reassuring. We are hopeful that with the supplements, the continued diet, the OT, continued speech and whatever else he wants us to try we are going to see even more progress by his next birthday! Today we received what has been missing in a while: Hope.

PC

Day 19

Ryan had a bad day. One of his teachers called me to tell me that he had several meltdowns and he was acting differently than he has been the last two weeks. She said he was whiny and cried because he finished his snack and wanted more. We haven't given him anything new in the past 24 hours so I'm not sure why this happened. He flipped out on the car ride home because Phil had to stop for gas and he wouldn't let Ryan get out of the car. He then cried even harder when Phil drove a different way home due to his detour to the gas station. The only thing I can think of is that he deviated slightly from the diet the day before when he grabbed Julia's bag of pretzels instead of his own. He had 2 or 3 mini pretzels before we stopped him. Note to self...we need to come up with a color code system or something similar so that he doesn't accidentally eat someone else's food. At home we can just switch Julia over to some of the GF snacks (although she is not taking a liking to them the way Ryan has). But at school he's going to have other kids' food around him all of the time. Who knows... maybe he snuck more non-GFCG food that we don't know about.

On a positive note, he took his dose of cod liver oil much better last night. We mixed one part oil with one part water. This helped to dilute it and not be so oily. We then gave it to him in two different syringe sessions. This is the first day that he hasn't spite some of it out. I don't know if it is because he is getting used to the taste or because we diluted it, but I'm going to keep diluting it in the future!

Off to Dr. Bock tomorrow morning! Our November 8th appointment got moved up to this week...Miracle! Dr. Bock is a specialist, a DAN! (Defeat Autism Now!) doctor.

DC

Day 18

As we were driving home today we realized that we have not had takeout since we started this GF/CF diet. We have to find places for us to order out food in case we run into times when making food at home is not a possibility. Ryan is doing so well on his diet that we are constantly getting reports of what a different child he has become and it is amazing.

Today Ryan was re-tested for OT and we have to wait for the official report. However, as Dawn was talking to the evaluator she was telling us that Ryan did such a great job of doing the activities. When she was interviewing his teachers they were telling her stories about how Ryan would not sit still, would not listen, or follow directions. When she was evaluating Ryan she was thinking that everyone was lying to her. Ryan did a fantastic job. He held her hand and walked her over to table where they could work. He followed directions and stayed on task for the testing. Before this diet Ryan had a very limited attention span. To hear that he sat through the entire test and followed directions is nothing short of miraculous. While he does have some areas that will need to be addressed with some OT therapy, he is showing improvement since his last OT evaluation six months ago.

PC

Day 16

Another fabulous day! He sat with me for an hour playing different board games, including Chess. He actually said, "Mama, will you play with me?" Of course he didn't play the way adults play, but he made up the game as we went along and was content simply moving the pieces around. He took the balls for the Chinese Checkers game and arranged them into different patterns. He got a really good fine motor workout in! I've never seen him sit still for one whole hour and stay entertained playing games. At one point I leaned over and kissed his head. Normally he would squirm away from me, and then wipe his head where I touched it. This time he looked at me and said, "Thank you, Mama." How lucky am I to get my Mother's Day gift a week early? He melted my heart. What a gentle soul!

Ryan's appetite has returned. He ate well all day, and did not have a meltdown when he asked for something he wasn't allowed to have and we didn't give it to him. In fact, he already knew he wasn't allowed to have it, but he half-heartedly asked already knowing the answer. And it wasn't like he was devastated or felt deprived he couldn't have it. He drank the rice milk again today, but we tried pear juice and he didn't like it. For dinner he ate a hot dog (no bun), an entire boneless chicken breast, and a bowl of rice. He's still not interested in vegetables, but we'll take whatever victories we can get.

DC

Day 14

Ryan finally drank the rice milk! He had 2 servings of the Rice Dream rice milk, just the classic original one, not the vanilla flavored. We put it in his dinosaur decorated mug and he was very excited. He called it his "coffee" and said he was drinking "coffee" like nonna and papa. Still no luck with the supplements, but accepting the milk was a big step for today, and hopefully we'll be successful with it again tomorrow.

I went to Trader Joe's in Danbury today. I was able to find a few things that are different than stuff we've seen in other stores. And the prices were more reasonable than we've seen in some other stores. For example, the margarine he can have is over $4.50 for a little tub at Mrs. Green's but I saved over a $1.00 purchasing it Trader Joe's. But overall, I wasn't crazy about shopping there. Yes, there were tons of organic options, but I had trouble finding things that are gluten-free and wasn't able to find anything that said casein-free. While there were more choices and a bigger selection of organic items to choose from, I would not be able to go there for a majority of Ryan's food. But once a month it might be helpful and cost efficient to make a trip there to stock up on things that they do have.

Today I also purchased Omega-3 vitamins. They come packaged looking and sort of tasting like gummy bear/sour patch candies. He was interested in trying one but took one sniff and refused. Julia had no problem eating one; but even seeing her eat one and like it, he still refused.

DC