Here is my update. Hudson was started on medication this summer. He gets it 2X a day every day (for probably forever)
After he saw his neurologist in the winter they called back to say he was referred to a geneticist in Saskatoon however, the wait list is long and we wouldn’t hear anything for over a year. That his neurologist would like to get some bloodwork done to move ahead with some genetic testing to see if there is something to the spells he’s been having. And whether what is going on is in fact Episodic Ataxia. So we did that. We needed to have his bloodwork done in the city as this was a special testing that’s not done everywhere. Bloodwork was awful. He had a full blown meltdown and even kicked the lab tech 😓. This bloodwork can take up to 6 months before we would get any results. His blood would be sent to BC where it would be stored. And where his chromosomes would be kept for as long as they are until we decide to not have them there anymore.
I would say Hudson started his new medication in June. He’s done well with it minus the awful taste. He is a trooper though and takes it for us. After he started this, his neurologist wanted more bloodwork done 6 weeks after ya make sure he wasn’t going acedotic. So he went again for the dreaded bloodwork 🙈. He had to have another person help hold him down. Didn’t go well. Missed the vein and had to try again. I felt so bad for the girl who was taking his blood. We got it done but then she called us back to tell us we had to go to another clinic to get more bloodwork done as the blood gases had to be done in the town next to us a hour away. Which was totally fine was just dreading going through it again 🙁.
So after a few weeks we did it. After much convincing to him it wasn’t going to hurt very much and he could strong. He did a lot better and clenched his eyes shut while he got it done. Phew!
We saw Hudson’s neurologist again this October for his 6 month follow up appointment. He is happy with where he is at and will continue with where we are going. He asked how the meds were doing and they ARE doing good but so far he’s not had a fever since the last one in Feb/March. *knock on wood* he hasn’t been sick!
So it’s just a matter of time before he has a fever with Flu season upon us. We had to sign forms at the school for permission forms that they can give him Advil if he does have a fever in hopes to prevent a spell from happening if it does happen. This medication will not get rid of spells completely but will help them from coming.
Hudson is enjoying school. Really likes his teacher. He still sees his SLP Assistsnt he was seeing from private but now at the school. He sees the SLP from last year at the school again this year and now that he sees his assistant at the school we now drive to Assiniboia 2X a month to see the SLP at the private company. He’s getting a lot of help and I think it’s definitely helping. He still has so far to overcome but we do see progress. He still sees ECIP that comes here from Moose Jaw and unfortunately they will have to discharge him before he turns 6 which will be this coming March. So that will be hard as he really looks forward to those appointments.
We all went for eye appointments in October and found out he needs glasses now. Was a complete shock. He has noticed a big change and loves his glasses.
I had a call yesterday and it was Hudson’s neurologist from Saskatoon to tell me that he received the results from that genetic blood test that was done and it did show changes in one of the genes which confirms that what Hudson is being treated for (Genetic Ataxia) is definitely what he has. That he was going to refer him to the geneticist. When I asked him if we did already he did confirm that. So he will send his results to that Dr in Saskatoon and we just have to wait for an appointment. When we had our letter mailed this year it said the wait is between 3 & 4 YEARS!! So it will be a long wait..
Hudson has also started seeing a paediatrician in Moose Jaw to keep an eye on him between our neurologist appointments. He’s a very nice Dr and Hudson is really starting to not mind all these appointments.
So there is our lives in a nutshell in the last 9 months 💁🏼♀️
