First time flying - severe cp' -oxygen hire- transfers

34Danielle

Looking for advice specifically around oxygen hire, transfers and managing flying for the first time with a complex child please 🙏

Our son is 2 and half , gmfc level 5, immobile, non verbal, with epilepsy, Tof/oa, dystonia, severe gastroesophageal reflux, visually impaired, chronic lung disease, gastro jejunally fed and oxygen dependent overnight. We are taking him abroad to Tenerife for the first time at the end if August.

We've been advised to hire an oxygen concentrator but we only ever use cannisters. Baywater don't supply outside of the UK so they recommended Oxygen worldwide but they said they don't supply for flights the airline should. We're flying with jet2 and they do not so I'm chasing my tail a bit here. We don't even know how concentrators work and he needs to be on a continuous flow for the flight according to his fit to fly. Then I'm worried about him potentially needing more if he becomes unwell when we're out there and us not having enough batteries. The hotel also said they don't have a back up generator in the event of a power cut ( have to think of these things sadly)

He also needs portable oxygen in the day sometimes as he is an prolific breath-holder 🙈 How would this work with a concentrator?

Does anyone have any advice about transfers as we cannot have him on our knee whilst travelling on the motorway. He only has a joei 360 carseat at the moment but it's isofix so we couldn't take that?

He is nil by mouth so I am worried about the pressure as he doesn't really take dummies or chew on anything. Would headphones help him at all?

Any experience would be greatly appreciated it's all making me very anxious 😟 Thank you 🙏

Mary_Scope

Hi @34Danielle and a warm welcome the community from me!

I'm sorry I'm not able to answer your questions about the oxygen concentrator but hopefully some of our other members who have travelled and needed to use one will see this post and share their experience.

Headphones can help mute the overwhelming and scary noises of the aircraft engines which could help keep his nervous system calm but they probably won't stop the physical air pressure changes in his ears.

For travelling on the motorway, it may be worth contacting a specialist mobility transfer company and requesting a wheelchair accessible vehicle. If you travel with your sons buggy, he should be able to remain strapped into this when inside the vehicle because the car should have the equipment like safety harnesses and straps.

I'm also going to tag the CP specialists in this as they may have some more advice on this topic @SaraC_Scope, @Richard_Scope and @Lucy_Scope

I hope you and your family have a wonderful time in Tenerife!

Lucy_Scope

Hi @34Danielle 

I am so sorry to hear that you are having difficulty.

I'm sorry too. I am not able to answer your questions about the oxygen concentrator.

Are you a part of Cerebral Palsy UK on Facebook? I think there may be other parents with similar experiences. They may be able to provide peer advice.

Take care,

Lucy