Advice re: sleep/breathing monitors pls?

[SamsMum]

Can you help with advice on sleep/breathing monitors for an epileptic child please?

My 12 month old son has West’s Syndrome. He has different sorts of seizures. One particular type is where he totally freezes and stops breathing. I then need to administer rescue meds quickly as he is turning blue. As a result, he is never left on his own when awake, even in a secure environment such as a playpen.

At night I have been using an AngelCare monitor, which is a standard baby monitor. It has a sensor pad that goes under the mattress and alerts me if he stops breathing. However, the manufacturers advise me its not really suitable after 14 months due to the change in the body’s physiology. He’s a really tall lad and already as big as most 18 month old kids. Therefore, I need to get my hands on a monitor that designed for children/toddlers and not just a SIDS baby monitor.

Can anyone let me know if they have a child who stops breathing and if you have a monitor, what type it is? Additionally, if you are in the UK, can you let me know whether the local health authorities were able to help with funding/rental/loan?

All help will be very much appreciated. In a few weeks he will have to come off his Sabril (Vigabatrin) due to side effects of long term use (he’s been on it for nearly 6 months). His epilepsy is fairly well controlled on this but I expect him to go through a rough patch as we take him off it and try and find something else that will work for him.

Thanks in advance.

 

[Dutch mom]

Hello Sam's mom,

I do know many IS/West kinds and partents and several kids with Infantile spasms (IS) / West syndrome who sleep with a saturation monitor attached to their toe or finger. In the Netherlands such a monitor is covered by your health insurance. I'm not sure about the UK.

You can ask about it on the Matthews Friends forum, the Matthews Friends Foundation is a UK organisation for the ketogenic diet for epilepsy. They do have several IS-parents there and there's a lot of knowledge about epilepsy and about insurance and funding. The ketogenic diet can be very effective for treatment of West too. I'm sure the parents there can answer your questions about the Brittish situation, rules and organisations that can help.

The Matthews Friends forum
http://forum.matthewsfriends.org/index.php?app=core&module=global&section=register

The IS forum http://infantilespasms.com/forum/

And check out this one http://www.vahlkamp.nl/gb/v.html (epi watcher, it's not a saturation monitor but it could be a good one instead of the Angelcare.)

 

[Endless]

I googled "breathing monitor for adults" I know your little one isn't an adult, but I thought it might bring up some larger models. Here are some of the results:

http://www.oromedhealthcare.com/pro...Apnea-alarm-Cessation-of-breathing-alarm.html

http://www.semedicalsupply.com/pulse_oximeters.htm?gclid=CI-8iqax8qMCFQIHbAodDWin3g
(pulse oximeter will go off if oxy levels go below a certain point)

http://www.respisense.com/en/index.php (for babies, but might work for your little one)

 

[Bens mom]

Hello Sams mom, I use the angle care monitor for my son he is 28yrs old, I know it works for him because it alarms when he gets up in the morning. I also have the summer monitors which are a camera and tv monitor on him at all times. These are the best things I have ever brought, three cameras, two big monitors and a portable monitor( fits don't give loo breaks). Sadly help with funds will be a harder problem to solve, get intouch with social services (you will have to at some point), the benefit agencies (be prepared to fight your corner and appeal) or you may get some help from charities (trawl the net). Hope this helps Bens mom