Toddler, MS and Medication

I'm Back!

It has been a long while since i've posted a blog and I can tell you right now that a lot has happened!  I've had a little girl, gone back to work full time and started a new treatment.  

Our darling daughter was born on her due date back in October 2014, her arrival was nothing to exciting and she came pretty promptly!  I arrived at the hospital around 3-4am and she was born at 11.28am and she stole our hearts from that very moment and every single moment after that.  I suppose the real fun started when we arrived home.  The medication I had to go on while I was pregnant (Copaxone) wasn't holding my disease well enough and I was starting to have another relapse.  It was getting so bad that my walking started to worsen and that wasn't ideal with a new born and a house with stairs.  A decision had to be made only 6 weeks after she was born that I had to go back onto Tysabri.  Tysabri and breastfeeding was a no go so I had to stop abruptly and deal with the aftermath of that while I was in hospital for 3 days.  As if leaving my tiny baby wasn't hard enough I had painful swollen and leaking boobs!  As soon as I started back on the steroids I felt them working.  

The treatment of monthly infusionshad begun.....again.  While I was getting the desired outcome of the Tysabri infusions my veins were getting harder and harder to cannulate.  It would sometimes take 2-4 attempts to get a good-ish vein...luckily the treatment only needed it last a maximum of 3 hours.  I guess it was just the frustration of this monthly routine of many failed attempts that I started to consider going as far as getting a Port-a-cath put in for the ease of the infusions.  Thankfully it never came to that, my Neurologist spoke to me about Lemtrada.  


Put very simply how the drug actually works

Put very simply how the drug actually works

It was 2 years after I had my daughter the subject of changing my medication came up.  I greeted the change with open arms but also had a lot of information to digest about the actual drug and its side effects.  I thought that while I was still fairly 'symptom free' on good days it was a good time to start this treatment.  I took a few weeks to read, learn and talk about how this treatment would benefit me and my family.  The decision was made fairly quickly and I started as soon as I could.  

I was admitted to hospital on the 22nd of January for the pre meds and started Lemtrada on the 23rd.  I was on a cocktail of drugs.....all designed to help with the side effects of Lemtrada while i was taking it.  All in all I was in hospital for 6 days and the treatment lasted for 5 days (5 infusions of Lemtrada).    I had to have 3 different IV sites during my stay thanks to the abuse my veins have previously been through.  I had a fairly uneventful treatment except the god awful headache that I got.  The hardest part of the whole thing was just feeling a bit lonely, especially when you're so used to being busy and surrounded by lots of people or running around after a 2 year old!  

5 days all ticked off!

5 days all ticked off!

So this is round 1 of 2 that I will need to have and the beginning of the 5 years of monthly blood and urine tests....however it wasn't my last hospital stay.  My darling daughter (the living petrie dish) brought home the dreaded daycare cough/cold/snot - you name it she had it!  I then got it and not so nicely.  It landed me back into hospital for 4 more days to help get over it.  Even the pharmacist who discharged me only a week before greeted me with "oh no! not you again!" when he came back to once again discharge me with my medications.  Since I've been home again i've not had anymore illness bad enough to land me back into hospital and I hope to keep it that way until my scheduled admission for round 2 next year!

This is a condensed version of the happenings over the last few years and months but please, if you have any questions just leave them in the comment section below and I will gladly answer them :) 

until next time xx