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