Kenzie Boston Checkup

On Thursday Kenzie had her check up with Dr Rodan at Boston Childrens Hospital.  Because it can be pretty stressful getting to the hospital on time whilst finding parking (which is very scarce, and the parking garages are tight), we traveled down Wednesday night after work and school, and stayed at a Homewood Suites nearby.   Luckily they have a shuttle that will take you to and from the hospitals, so that made life a lot easier. So hopefully we will be able to pursue that option in the future!

So from the appointment we learned one key thing (that I think we already knew) ... that not much has changed.  That is both good and bad.  The bad is that Kenzie is still between 24 and 25 pounds, and that hasn't really changed much in the last year.  So with that being said at her next appointment Kenzie will be seeing a nutritionist to see how we can try and change that.  It seems to be a mix of what Kenzie can eat and also that all of Kenzie's extra movements burn a lot of calories. 

With that being said, the doctor would like to take the opportunity of Kenzie having started with new therapists at the Morrison Center to try out new drugs on her to help with her dystonia, or extra movements.  So we will be starting Kenzie on a drug called Sinemet, which is used traditionally in patients with Parkinsons disease.  Some individuals who have symptoms or gene changes close to Kenzie have shown great improvement on this drug.  It will be started at a low dose, and slowly incremented upwards depending on how Kenzie does.  Like any drug, there is potential for side effects, and in this case the most common would be nausea, or in some cases it can make her dystonia worse.  However, each doses lasts a little after 4 hours and if she is taken off the drug then the side effects will go away. Depending on how this medication does, will determine whether we continue with it or try a different medication.  There are several medications we can try if needed, like trial and error to see what works for Kenzie.  Last resort would be a discussion about surgery , but that would be a ways down the road and only if we've exhausted all other avenues.  The dystonia is important because it seems to be the single thing that is slowing Kenzie down the most in her development. 

So we will be going back down to Boston again in February.  She will have 3 appointments in one day.  She will be seeing Dr Rodan for her normal check up, she will be seen at the orthopedics clinic, and by the nutritionist. So that is 3 appointments in one day, which will make for a long one.  Hopefully we will stay at that Homewood Suites again, so that we don't have to add 4 hours (round trip) of driving in as well on top of the tired kids!!! 

We are also waiting for some lab work to come back for Kenzie, and we do not expect anything earth shattering.  If needed, we will update everyone. 

Thanks for keeping Kenzie in your thoughts and prayers!