May 29, 2008 mcfadyena

In the past two weeks, Trey has had a number of appointments in addition to his weekly Enzyme Replacement Therapy infusions

In the past two weeks, Trey has had a number of appointments in addition to his weekly Enzyme Replacement Therapy infusions: neurodevelopment tests in North Carolina, ENT, opthamology, rheumatology, nutritionist, homeopath, osteopath, and as well, we received his cardiology results from back in January.
With a three hour time difference, over 14 hours of travel and unhealthy food on the Saturday before Monday’s tests, and 6 hours of development tests in one day with only an hour break in the middle (Trey & Ry were at the Centre for Development & Learning from 11am-7:00pm), Trey did very well with the neurodevelopmental testing at UNC. Without getting into too many details, although Trey’s test scores were similar to 6 months ago (ie. his IQ has remained the same), Dr. Escolar still maintains that she is not sure about Trey’s central nervous system. Although this is not the exact news we were looking for, Trey is doing so well and he is starting to talk so much, we’re feeling good. Until the Intrathecal trial starts, however, we will continue to have his development tested regularly (every six or so months).
Besides having some wax in one ear, which Trey’s ENT doctor removed, Trey’s ears are doing well and his tubes are in (he had Goode/permanent tubes put in on October 1, 2007). His hearing is also stable, as per his audiology appointment a couple months ago.
At his opthamology appointment Tuesday, the doctor did a new eye exam because Trey is older now and able to do more involved tests. His eyes are fine and she wants to see him again in one year (we expected everything to be fine as eye problems are rare with Hunter’s).
Trey’s joints are also stable. Within the first 9 months of Trey beginning ERT, Trey’s joints gained some range. Since then, his joints have maintained that new range. Trey’s PT, Iris, who Trey has been seeing every 6 weeks for the past 2 years, has noticed that his joints fluctuate, but since overall everything remains the same and his range is not changing, the rheumatologist thinks it is unnecessary  for Trey to see the PT so often.
About a month or so ago, we did a food diary for Trey and gave it to the Biochemical Disease nutritionist at BC Children’s Hospital. Given what he eats (all organic home made food, nothing processed, no additives or preservatives, low  sugar and when there is sugar it is natural sugar in the form of maple syrup or honey etc.), his height and how much he weighs (he is above the 97th %ile for both height and weight), she believes his nutrition is good. The only change she recommends at this point is giving him more calcium and vitamin D, as they are low in his diet and his bloodwork confirms this.
Trey’s alternative therapies are also going well. His osteopath is amazed by the changes she has seen in Trey since he began ERT. Before he began ERT, she described the fluid in his body as stuffy and slow moving. She says it feels and looks as though he’s grown into his body. When we first started seeing her, Trey saw her weekly. On Wednesday she said she doesn’t need to see him for 6 monthes!! Trey’s homeopath also thinks Trey is doing amazingly well.
And last, but not least for appointments, is cardiology. I’m still confused by the results and am awaiting clarification, but I will try to give you a bit of info. My understanding at this point is that Trey’s valves do have some thickening. What I do not understand is whether or not this thickening has changed from last year. Dr. Stockler is going to have one cardiologist interpret all of Trey’s test results since 2006 and get back to me. Dr. Escolar read the results and said this is typical for Hunter’s.

Motion Passed in the House of Commons

In other news, on Wednesday, May 7, North Vancouver MP Don Bell’s Private Member’s Motion-426 was passed in the House of Commons. Trey was mentioned by Mr. Bell during his second hour of debate on the Motion. Click here to read his official Hansard comments. One week later, an article appeared on the front page of the North Shore News about the passing of the bill; click here to read the article.


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