Unfunded treatment for West Syndrome

Hey beautiful people; I thought I'd update the original blog I made about my boy as a lot has changed, we found out so much more and he came home with needing low flow oxygen while sleeping.

Following on from the last admission at starship- Cia sharpe (Neurologist) had requested he take carbamazepine but a low dose, increasing it every week. On the 18th of November we saw Dave Graham, our Pediatrician, and he decided to go full tit and give him for max dose hoping it would help settle him. It did the opposite. On the 27th of November we had a meeting with his neurologist at Waikato hospital in the CDC centre. She explained that she wanted to add clobazam and drop carbamazepine as the last drug was making him worse. To the point he would be walking, in the bath or eating and he would just have a drop attack, often head butting the floor or bath water. These were so severe and scary that I would cry whenever I saw him doing it.

On Friday the 27th of November, whilst we were waiting to get bloods done Bjorn had a severe seizure lasting more than 24 minutes - he was given a dose of midazolam which is a sedative which knocked him out and started the flow of the downhill shit fest. They kept him in for longer because he wasn't waking up and he was de sating requiring a monitor. Saturday night was even worse - we both woke up to Bjorn shallow breathing and I immediately stopped the clobazam and rung Dave he said its best to come in Monday and they can admit him for 48 hours to monitor the clobazam safely. Dave explained to myself and the Registrar to chart him 1mg of clobazam morning and night. Regardless of what Dave said the reg charted 2mls of clobazam which resulted in a severe dip in his oxygen saturation and heart rate drops 2 hours later. Not once did a nurse put him on Oxygen or check in regularly overnight. At one point she didn't even put him on the machinee that measures his breathing, oxygen levels etc. I had to ask. Tuesday morning is when it all went pear shaped. Emergency button was hit twice. Bjorn was struggling to breathe on his own. Not wanting a bottle, tit, or anything. He just looked really dire, they put him on oxygen and transfered us to Starship via an ambulance. Dave apologized and said that he was transferring us up to starship as we were no longer safe to be in the care of Waikato. This is coming from the head of the pediatrics department.

The 11 days of Starship was so emotionally, mentally, and physically draining. We would have been in longer if the Reg up at starship didn't organize oxygen as fast as she did. Whilst in starship he underwent testing to see if he was a great candidate for brain surgery - results of those are still pending. He also had an EECHO, video EEG, Chest xray, kidney scan and to check to see why he was de stating in his sleep so much.

Bjorn is booked in for a video fluroscopy next year and an extensive sleep study, he has also been referred to a speech therapist and we now have a home care nurse, he also isn't developing as he should and now needs a VNT. He is to remain on low flow oxygen at home until the forseeable. Everything has hit at once, and has happened all at once. I cant take him anywhere because of the steriods he was on, I struggle to get groceries, anything because its mentally draining. Its like filling a bath up with water and unplugging the plug. Thats me every dam day.. Taking an oxygen tank with me is our only option where ever we go. All I hear is beep beep in my head whenever I go to sleep. I'm constantly watching to see if he has any new seizures, which he has, our marriage is gone, our finances have taking a huge hit given I have to be ready to leave for starship or Waikato my other kids need their mum and I'm barely here, only doing the basics to survive, we are just in constant chaos. I know there are so much more people worse off than us, but believe you me, this is the hardest to watch given everything we've gone through already.

My boy has now failed 3 rounds of prednisone, vigabatrin, keppra, Topamax sprinkles, carbamazipine and clobazam - which sent his little heart into a downward spiral and resulted to us being transfered from waikato to starship for an 11 day stay . We came home with Bjorn needing oxygen and saturation monitor. What I am now saying is keto is our only option - its God dam expensive, its not funded and now they've taken my boy off every drug putting all their eggs into the keto basket.. neuro surgery being our next option. I dont want to override his little body with more pills, and side effects. Keto has been scientifically proven to help IS and its the least evasive with his condition being treated with food. We are running out of options fast and needing to go private to give him the best chance at life.

This is the hardest journey we have ever had to endure and if it wasn't for the amazing support we receive from all our friends, family, all the services that we are under, Dave Graham the pediatrician, it certainly has shown us who cares and who pretends to. This is so draining - emotionally, mentally, on our marriage, on logans work life, our girls, our boy. We are no longer a normal family with normal mundane problems. It is all so complex, I just wish there was a light at the end of the tunnel and im praying keto is our glimmer of hope. This is no longer about having enough money to try him on a keto its about exhausting all our options available to us to find a cure, I will try everything and anything at this point. . The next and only option we have left after keto is brain surgery. Removing the damaged part of his brain in the left frontal lobe. I can not think, eat properly or function. Its so overwhelming to even begin to think about removing a part of his brain. Anything we can try, i will try.

I just wanna take the time out to say that I'd be a complete an utter mess. It takes a village to raise a child and I am so humbled by all the help and support our whanau has been recieving during this heart breaking journey. I just want to express our sincere gratitude and appreciation for each and every one

Of you who have donated; giving our family that glimmer of hope.

Lots of Aroha,

Bjorn and Kirk Family xx