Saturday 6 June 2015

Minocycline and Sertraline Trial Update

The decision to try medication came after the FX conference in 2013.  We were fortunate enough to get a one-on-one appointment with Randi Hagerman who recommended some meds for both Merryn and Connor to try.

It took quite a while to get everything in place and I was really starting to give up on it all at one point.  The appointments and testing I had to organise and get the kids to, to do the base line testing, was painful and was mostly done when I was very pregnant with Liam.

That being said it has been worthwhile in the end.  We have trialed both Minocycline (to help with the cognitive development and processing) and Sertraline (to help with anxiety).  It's been our experience that the Mino really didn't help Connor significantly and so it wasn't worth the side effects (staining the teeth and bones).  We didn't think Merryn needed to try it as she is doing so well cognitively.

The Sertraline, on the other hand, has been a success.  Both of them are very anxious little souls and often become overwhelmed, but they seem to keep it together a bit better with the Sertraline.  It's a very expensive proposition as we have to have it compounded into a liquid, but thankfully they take very small doses, so each bottle lasts about a month.

Term 1 - School and Kindy

Well Term 1 has already come and gone and the kids are well into Term 2.  Where is the year going?!?

Connor's first term at prep started out very rocky.  The first week seemed to go fairly well and he really liked catching the bus a few days a week.  It's a mini bus that does door-to-door pickups for the special school and has a person in the back with the kids.  Then week 2 arrived and he seemed to suddenly understand this was a permanent gig.  By Tuesday he was vomiting as we pulled into the carpark.  I spoke to his teacher, and she wanted to work through it.  I wasn't so sure.  Thankfully he started to calm down in the third week and by week four we were in the groove.

There are some mornings he curls up under his doona with his iPad and tries to hide when it's time to get ready for school, but he always runs out to the bus and gives me a big smile and a wave.  It took until half way through this term, but we finally got approval for him to be on the bus 5 days a week.  It's good to have the continuity in our schedule and it makes it easier for me to juggle everything.

Merryn is doing one day of ECDP and two days of Kindy.  She absolutely loves both but every drop off is a challenge.  She gets very shy as soon as we arrive and I often have to carry her in.  She warms up very quickly though and absolutely loves the craft and activities.  We have been so incredibly lucky with the teachers we've had, they are all so understanding and work very closely with me to help Merryn though her anxiety.

It's been a lot of hard work to get to this point, but it seems to be paying off.  I'm still worried about Connor's education, but we will take it one day at a time and I'll be monitoring it as we go forward.  At this point in time we just need to get through this year and hope that Connor gets to stay in Special School (they verify the Prep kids AGAIN and actually don't allow them to come back if they 'fail' the second verification).  Merryn is enrolled in a mainstream school for next year, so that will be our next big challenge I think.