More meds

Kanye had his neurology appointment today.

We parked in the botanic gardens car park and took a walk with him in his chair to the hospital. Was so warm and the gardens looked so lush and full of bloom.

Was relaxing to walk there before the deluge of information i was about to receive.

We were early which worked well as the neurologist took us straight away  where we spent nearly an hour in his office.

We talked general health and how hes been in past months as well as past 2 weeks post hospital visit after his flurry of seizures and vomiting.

So since we last saw the neurologist we had weaned kanye off one medication that is a rather old drug that's not commonly used anymore for epilepsy. Kanye was on 4 types of meds now down to 3 yay progress. 

But the medication we withdrew is the one that caused him to dribble a lot and since coming off it that hasn't changed .

So we are going to try travel sickness patches of all things. The effect of the patches is that is dries the mouth out so should help with the dribbling. We'll start on a quarter of a patch every 3 days between his shoulder blades so he cant remove it. And go from there, we can move all the way up to a whole patch if need be. . 

Should that not work and hes still dribbling when we see the neurologist again in 3 months time then we have 3 options.

He'll be sent to the ear nose and throat specialists who can either.
1. Ablate some of his salivary glands, there are many but they would focus on the ones toward the front of his mouth.
2. Re align his salivary glands so they essentially turn them around to face toward the back of his throat but for this he needs a good swallow which he doesn't have due to one of his meds (i'll get to that in a moment)
3. Botox injections into the salivary glands every 3-6 months.

So here's hoping the patches will do the trick , kanye has been under anaesthetic so much i'd prefer he didn't need any type of surgical procedure to stop his dribbling.

The throat issue. So i explained how he regularly chokes on food and that especially at night , hes a noisy breather. He snores (which technically hes not meant to be able to do from adenoid removal) he struggles to breathe and often sounds like he gulps while swallowing in his sleep. 

The neurologist said that the night time drops of clonazepam hes on to help him sleep sort of relax muscles and make his throat a bit floppy- not in a  way that it would close on itself but in a way that means his breathing is just noisy and because he has excess saliva he cant coordinate his swallowing of that and breathing when his throat is relaxed.


I mentioned his digestive system hasn't been the best and the supplemented milk hes on is likely the cause making his intestines a bit faster to move food through, when i asked if this means hes not getting nutrients he said well hes gained 70grams in 2 weeks so not a problem. 

The neurologist spoke to me about trialing a new medication in hopes that it could be better and we can start removing other meds as hes still on 3 and he'd like it to be 1 or 2 . 

The options he gave me were levetiracetam which he said is quite a good drug, it has very good control on hard to manage seizures and its one they use in babies and littlies the only problem is it can cause sleep disturbances and aggressiveness.

The other is lamotrigine which he decided to go with as it has pretty much no side effects. The only problem with this drug as it has been known in many cases especially those children on epilim already like Kanye is to get a skin rash which is essentially an allergic reaction. They aren't sure why it happens because epilim and lamotrigine actually work well together. They sort of support each others er dosage if you will, potency. The epilim helps metabolize the lamotrigine. So we have to now watch for a skin rash in the coming 6 weeks and take him to hospital if it happens. Good thing we have that blue card that means we can go straight through!

In future if we find that this new one works we can start taking other meds out  and if we are to take epilim out we then need to push lamotrigine up as it wont have epilim helping it.

We're starting a on a lose dose of lamotrigine , increasing it by 5mgs every 2 weeks until we are at 15 mg twice a day.

While not keen to keep adding in medications the neurologist said that Kanye has been on these current meds for nearly 3 years and if we don't try others we wont know if there's something better out there for him, so we're venturing out into the unknown know trying new meds. It would be great if it was just one for him. I dread to think f how his wee organs processes all of this everyday.

So came home from the appointment with lots to talk to Andre about and lots to process , will need to set myself reminders for his patches and the uppage of his meds i think. I took his script to the pharmacy and they're so great there, they know him and said they'll get the whole 3 month supply of everythign together for us.

Not long after getting kids ready for bed tonight my father in law called saying one of nephews was sick and on his way to hospital as he was unresponsive, so Andre and i watched our little baby nephew while my father in law took care of my eldest nephew until my mama in law got home from work. Hoping he'll be ok!

So busy day!