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

Fireworks

Ryan was excited that we were going to see fireworks.  He held some sparklers and didn't seem afraid.  We had the kids sit in the back of the car for the fireworks display.  The first one that went off caught all of us by surprise.  They were in awe watching them, but they were very loud and both kids held their ears.  But they didn't really complain.

Then we decided to close the hatchback and they viewed them through the glass.  The car helped to buffer the sound and all was well.  I'm glad we can finally say they have been to a fireworks show!

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