Week 47

This was a tough week for us with everyone being sick. Ryan was still sick most of the week. We kept both Ryan and Julia home on Monday and tried to send them in on Tuesday.  Half way through the day their daycare called to tell us that Julia was now sick and Dawn went to bring her home.  When I went to pick up Ryan later that afternoon he was standing on one of the outside play ground pieces and asked me "if he could go home now".  Normally we have to drag him off the playground but he looked so sick just standing there we kept him home the next two days.  It was a total team effort between Nonna and Grandma coming down and watching both of them the rest of the week. On Friday Ryan was well enough to go to school but Julia was still sick and went up to Nonna and Papa's house. Everyone is starting to get better but it was a long illness! 

This week we were supposed to drive up to Dr. Bock on Tuesday. However, with everyone still being sick this was not a possibility. So we set up a phone appointment.  Dr. Bock was pleased with Ryan's progress and was glad that he did well on the trip to Pittsburgh and Florida. He is going to write us a letter in support of Ryan on the GF/CF diet so we can add it to his IEP at his annual review this May. He also put Ryan on a new supplement called Phosphatidylcholine concentrate.  This is to help with developing and repairing neurons in the brain and to help with the break down of fatty acids.  He is still unsure as to why Ryan's eczema comes back so he is going to send us back for more blood work to look at fatty acid levels, vitamin D, iron, and minerals. 

The kids seem to be back to their old selves again.  Here they are dancing together...

We did not mention in last week's blog that we registered Ryan for Kindergarten! However, you would think that this would be an easy thing but of course it does come with it's transportation dilemma. The form for requesting transportation is due by April 1st. However, Ryan's annual review is not until the end of May. We will not know if Ryan is in morning, afternoon, or in the all day special education kindergarten (yes, our school district still has half day) until the middle of August. Our school district's response is to fill out the form letting them know where to pick him up and drop him off for all three scenario's.  However, how can we go to a day care facility and ask them for a spot if we do not know what we need? While I am sure that the transportation will work out it just causes us unnecessary stress and this always seems to be the one area that we get the biggest headaches with when dealing with Ryan and his programs.

Ryan came home with a clay dinosaur that he made at PARC.  He was quite proud of his creation!

PC

Week 26

We seem to have hit a good stride with the injections.  We had 2 more injections this week without Ryan crying.  We even got him to take the injection with Dawn's parents watching on the web cam.  Not exactly what we got the web cam for but it worked.  I think we are over the crying part of the injections.

With all of his injections, oils, medicine, and supplements we noticed that his skin was starting to break out again.  When we missed a few days of the powders, we noticed that his skin was much better.  We are in the process of eliminating a supplement to see if it is the cause of the skin issue.  We think that we have narrowed it down to the last supplement that we gave him but we will have to wait and see how the rest of the week goes.  We will keep you updated. 

My cousin just had a baby and she invited us over for dinner this past weekend.  Of all the people in our family my cousin Melissa has had the most experience with this type of diet.  She has had some severe food allergies and is pretty good about being a Vegan.  She was very excited to cook gluten free pasta for us and Ryan was very excited to see that she had the same butter that he uses at home.  Both Ryan and Julia were great interacting with everyone and they had a great time with their new baby cousin.  We have a video with Ryan singing a lullaby to Luke.  This is a great example of how far Ryan has come on this journey. 

This past Friday evening we were driving home and like most people are exhausted.  So we decided to go out to eat.  We have Ryan's diet down to a science now and finding stuff that he can eat at restaurants has been come less stressful.  Granted as long as we are going to a sit down place; fast food is still out and we are better for it with the kids.  So this Friday we decided to treat the kids to Japanese food, hibachi style.  We have taken the kids in the past but it always scared Ryan with all of the banging and fire on the grill.  This time we went and since it was so early we were the only ones in the hibachi section.  This was the perfect way to get Ryan used to all the noise.  He remember from the last time and kept asking us what color hat the chef was going to be wearing:  red or white?  When the chef came out with the red hat he was so excited.  When he started the show Ryan loved it.  He still backed away from the fire but it was an appropriate reaction to the heat of the fire.  The chef did give us a warning that the fire was coming and we were able to prep the kids but they really enjoyed it.  They were very accommodating with the diet and put aside the chicken and noddles so no soy sauce would get on it.  Soy sauce is a huge wheat product.  It is the first ingredient on the label.  He spent the rest of the weekend imitating the chef.  Ryan said thank you every time the chef put the food on his plate and constantly gave the waitress the thumbs up as she came by to check on us. 

Below is an example of how Ryan is starting to get differences with people, especially his sister.  In the past Ryan was so rigid in his thinking that everyone had to like the same things.  Ryan would rule the TV and always have to be the one to pick the shows.  Now he has learned that he has to share, that Julia likes different things than he does, and it is okay for other people to like things that he does not like.  This understanding of how different people react is a huge step for us and we hope we are on right path with him. 
PC



Week 14

New Supplements and Medicine

Dawn decided that the huge amount of supplements that we were given at our last Dr. Bock visit was too much to handle at once. So she decided to organize and now we have a spreadsheet that we use to keep track of the 20 or so different supplements and the two different prescription medicines that he is now on.

We have him taking a full teaspoon of  Nystatin 3 times a day now and one teaspoon of Gentamycin three times a day to counter the bacteria found in his blood work from our first Dr. Bock visit.  We are also adding several drops of Liquid Molybdenum to his food to help with Iron deficiencies and other cellular issues also found in the blood work.

In addition Ryan's behavior has been excellent this week.  Whatever the issues were with our trip to Virginia seem to have worked out.  He did great and his speech is really improving.  We went over to a neighbor's house to use the pool and they even noticed that he was talking more and that his articulation was much clearer.  He was making eye contact and was engaging them in conversation.  He thanked them for using the pool and for the food that they brought out.   These are the first people that we had met when we moved in to our house and they have watched Ryan and Julia grow up.  We went to a small family BBQ that they had last night and he was great in the pool.  He swam over to them and talked a little while with them and their relatives.  He gave them high fives good bye and swam away.  It was a real good week.

We also took a one day mini vacation with Nonna, Tommy, and the girls to the Great Wolf Lodge in Pennsylvania.  It is an indoor water park in the Pocono Mountains.  They all had a blast.  We all were able to stay in the same suite and Ryan did fantastic with the whole event.  The water park had water spraying from all different directions from several of the climbing areas and he did really well.  It took him a little time to get used to it and had did have trouble with his sensory issues with the water spraying into his face and the noise.  But after a few hours he was able to walk through the spray. 

He also loved the tube rides in the park. It was a huge climb to the top of a tower and then ride into dark tubes into a pool of water. He loved it! At first he wanted to go on the ride with Dawn or myself, but then he saw Amelia go by herself and then he wanted to go by himself all the time. It was a little scary for us to watch him go off into the dark tubes alone at four years old but he had no fear.

He had such a great time that after the first day he fell asleep at dinner.

Food was not a problem at the place.  We asked our waitress about different food options and she got one of the chefs to come out to meet with us.  He was able to make some chicken for him and cut up some potatoes to make fries for him.  They were very accommodating and there was never a problem.  The place had refrigerators in the rooms and we were able to keep Ryan's medicine cold.  He was also great at taking the medicine at the lodge as well.  Granted the medicine tastes like candy and it does not have too bad of an after taste.  It tastes a lot better then the oils that we have to given him! 

On the last day that we are at the lodge Dawn met a couple that had two little boys (four and five years old) that were also Autistic.  However, they were much further down on the spectrum to the point that they were non-verbal.  Dawn starting talking to them and they were taking their boys to a hospital for OT, Speech, and PT several times a week.  We found that they were not on the diet, they had never taken her boys to a DAN! doctor, and were surprised at all the tests that Ryan had from Dr. Bock.  It was a short conversation as her boys were running away.  Hopefully Dawn gave them some ideas and a different point of view.

Also this week, Papa made a spinning board for Ryan to use.  His OT person, Ms. Mary, uses this spinning board with Ryan and Dawn took the measurements of the board the she uses.  She sent them to her father and he made a board for him.  Both Julia and Ryan sit and spin on this board all the time.  It is to help with the fluid in his inner ear that helps with sensory issues.  He is to sit and spin ten times in both directions, then lay down on the board with his cheek on the board and spin in both directions again.  Dawn looked up this board on the internet and it was over $150 dollars!  Hopefully having the board in the house all the time will help.

PC

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

Day 60

Well it is day 60 of the diet.  Looking back at all of the successes and set backs we have had over the past 2 months it is important to remember that this is happening to Ryan and in part to Julia as well.  They are two little children having a grand time with each other and their friends at school.  They say good morning to each other every morning and kiss each other good night each night before bed.  They are so happy to see each other that we get reports from day care that when they run into each other they have to give each other a big hug.

Through all of the craziness of doctors appointments, CPSE meetings, faxes, emails, phone calls, supplements, and constantly watching what Ryan eats we have to consider ourselves very lucky.  We have support from family and friends and we have our little boy back.

PC    

Day 41

Happy Birthday Phil!

Ryan, Julia, and I were invited to Phil's job to join in the celebration for his birthday. Ryan did very well eating his GFCF cookies while everyone else had birthday cake. Prior to this diet he would have had a full-fledged meltdown if we told him he couldn't eat chocolate cake. But he was content eating his cookies.

Prior to that he had his second "interview" for a new school this fall, and the directors feel he will fit right in and accepted our application. One more thing to check off of our list of things to take care of to set up Ryan's schooling for September.

Phil thought we could go out to dinner at the Outback but at 4:30 the kids were "off the wall" and we thought it best to stay in for dinner. Ryan didn't have much of an appetite. We made turkey burgers and put his on GF toasted bread but he only ate about 1/3 of it. He was a bit cranky the rest of the evening and I'm thinking it may have been from something he ate earlier in the day.

We began him on another supplement tonight, a type of vitamin E. It is the 4th one that Dr. Bock suggested out of the 6 we took home. So combine these four with the three we were already doing prior to seeing Dr. Bock, and we're up to 7. It took over 10 minutes before just to prep all of his "medicines". Some are liquid and were added to his drink. The capsules were broken open and mixed with other foods.

We have a friend coming over for dinner tomorrow night. I think we might try our first take out pizza since we started the diet. We'll put Ryan's pizza in the oven and get him psyched about it and then maybe he won't feel so bad when he sees the box from the pizzeria. We'll let you know how it goes! Until then...

DC

Day 35

Today Ryan started his OT and from the reports from Daycare, the session went well. Hopefully we get an official report from the OT evaluator as to how he did and what they worked on today.

Tonight we tried brown rice spaghetti for dinner. Since we arrived home so late we just made the whole pound for the family and not a separate dinner for the rest of the family. We have been starting to find ourselves just making GF/CF meals for everyone. It is a lot of time to prepare these meals and apparently daycare does not feed our children because the moment they walk in the door they must eat!

Ryan is taking his supplements a little better but each night we are having to find different ways for him to take the powder supplements. Until he learns to swallow a pill we are going to have to hide it in different foods. Tonight we hid the powder in soy ice cream.

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 27

While the diet seems to be working great his skin stills is so dry and scratchy. We had hoped by this time we would be seeing a change in his skin. Some people suggest removing food high in Phenols. We seem to be getting a good handle on the GF/CF food and he is doing such a great job with the new diet. Having a new set of food that we have to watch for is going to be another challenge.

Ryan is doing such a great job with the food he has even told other people that he can not have certain foods. Today in daycare they were having Goldfish for a snack. The teacher was in such a rush getting the snacks out for the other children she forgot and gave Ryan a plate of Goldfish. He went up to the teacher and told her that he can not have Goldfish and that he wanted his special snacks. Even at four years old, he is recognizing what types of food that he wants and can have. We often wonder if he recognizes the effect that the diet is having on himself and what he was before the diet.

We have also been noticing that his memory is greatly improving. He is hearing songs on the car radio and singing them. He never did this before. He is also telling us the songs that they are singing in school, which is also a first. We attribute this to the diet and also the supplements that Dr. Bock had prescribed for Ryan.

The only bad thing today was that I had to pick him up early from day care because of the croup. He was coughing badly and was withdrawing from others. He has been doing so well, we decided that we were not going to push it. His regular doctor prescribed a liquid steroid to help with the coughing and it seems to help. Hopefully tomorrow will be a better day for him.

PC

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 13

Anyone trying this diet should read the book "The Autism & ADHD Diet" by Barrie Silberberg. It is informative, descriptive, and thorough. I unfortunately can't find the time to make some of the recipes available in the book, but maybe this summer. If we can keep this up until the summer. After tonight I feel like quitting.

I was finally able to get Ryan to step on the scale this afternoon. He has lost 4 pounds since we started the diet almost 2 weeks ago. I know this is not a detrimental weight loss but it is noticeable, especially in his face. His skin is still red and blotchy and he is constantly scratching it.

He didn't eat a lot today; his appetite is not what it used to be. He was uncooperative taking his supplements, and without Phil here to help me tonight, I was unable to get him to take it. I was so frustrated with him and his behavior that I had my own meltdown.

He still won't drink the milk. If I could go back and change something when starting this diet, it would be the way we handled the milk switch. We should have started by using a mix of 25% milk alternative with 75% regular milk and then when he got used to it, start slowly tipping the scales towards 100% milk substitute. Now I'm afraid he won't ever want to try the milk.

DC