2009 June |

Archive for June, 2009

Quick Update: Assessment For OT and PT

Posted by Melissa | Filed under Appointments, Quick Update

Just got word that Kyle will get his assessments for Occupational Therapy and Physiotherapy the third week of July.
I think it’s so awesome that the centre is just a 10 minute drive, and that all of the services are completely free. If we were to find someone outside of the Pathways centre, I know that our insurance would only cover part of the cost. [...]

Good News, Info To Chew On, Update, And Something Strange

Posted by Melissa | Filed under Gaucher Disease, Treatment

While Kyle was receiving a treatment today, I received good news today concerning the expected shortage of his treatments come August…Kyle will NOT have to miss any of his treatments.
They said priorities are in place, and that I don’t have to worry about Kyle’s treatments. In fact, they have appointments booked right up until September for him. [...]

Bone Marrow Transplant Hanging Over Our Heads

Posted by Melissa | Filed under Gaucher Disease, Thoughts From Mom, Treatment

The whole bone marrow process is out of our hands. It’s up to the doctors to make things happen.
But that doesn’t really stop people from asking us about what’s going on with the whole thing. And to be completely honest, ever since we found out our other son was not a match for Kyle, we’ve [...]

Tags: Gaucher Disease, gaucher disease treatment, gaucher disease type 3, gaucher treatment

Oops, forgot to mention…

Posted by Melissa | Filed under Gaucher Disease, Treatment

Yesterday when I posted about Genzyme halting production on the medication that Kyle takes to treat the physical symptoms of his disease, I forgot to mention why…
They reason they have to halt production is because the plant in Boston has to be decontaminated due to a virus, so there really isn’t anything anyone can do [...]

Tags: gaucher treatment

Genzyme Halts Production – Kyle’s Treatment May Not Be Available

Posted by Melissa | Filed under Uncategorized

I just got word that the company that makes the Cerezyme treatment for Gaucher disease, has halted production in the one and only plant where treatments are made.
According to Genzyme, current inventories of Gaucher disease treatment Cerezyme are not sufficient to meet global demand. The plant will not return to full operation until the end [...]

Tags: gaucher treatment

Time To Get Kyle Some More Help

Posted by Melissa | Filed under Appointments, Gaucher Disease

It’s no secret that Kyle is developmentally behind, and with his first birthday fast approaching, I think it’s time to get him some real help so he can get on track.
When I spoke to one of Kyle’s specialists about physical therapy and the like for Kyle, he said we could look into that if we [...]

Tags: Gaucher Disease

Treatment

Posted by Melissa | Filed under Thoughts From Mom, Treatment

I’m really amazed at how quickly and effectively the Cerezyme treatment is working. It’s not just his tummy that is getting smaller, but is disposition is better.
Kyle has always been an easy, happy baby, but since he started treatment there’s an even deeper contentment. It’s hard to explain this change. But from what adults who [...]

Tags: gaucher disease treatment