Infant cpap mask?

[SleepingUgly]

apneasupport.org has a pediatric OSA section:

http://www.apneasupport.org/pediatric-s ... a-f14.html

[chunkyfrog]

I'll be praying for you and Ciara.

[Ciarasmom]

thank you all again for info. most do not understand or even believe this type of situation but sadly all comes down to greed and finger pointing. been making myself crazy trying to figure out if something is available why it could be so difficult to learn about. i suppose the rules in place to keep us safe come at a high cost....so who do we trust? can make you quite paranoid if you try to figure it out, especially when no one ever became addicted to cpap. must stop typing before my computer spontaneously combusts!

[Ciarasmom]

In Canada I would talk to:

McArthur Medical Sales Inc
1846 5th Concession W.
Rockton, Ontario L0R 1X0
Canada
Tel: +1 519 622 4030
Fax: +1 519 622 1142
Email rhefford@mcarthurmedical.com
Contact: Roy Hefford

About:
Airon products
http://aironusa.com/accessories/

Like the following:
Nasal CPAP (nCPAP) / Non – invasive Ventilation (NIV) Kits for the pNeuton mini
These kits provide the parts necessary to convert the Neonatal/Infant patient circuit (P/N 58031) for nCPAP and / or NIV patient application. Each kit includes 5 Miniflow tube sets, 3 different size nasal prongs, 3 different size nasal masks, 3 different size bonnets (head caps) and detailed instructions. These kits can be used when it is not known what size prongs, masks and bonnets are required for the patient. The 58235 kit has prongs / masks for very small neonates. The 58235 kit is for full term babies.


P/N 58235 – Nasal NIV Kit, NIC FM, disposable, small, 5 applications, single patient use
P/N 58236 – Nasal NIV Kit, NIC FM, disposable, large, 5 applications, single patient use

Do you prefer this rather than resmed? thank you for any info. also have some info on spec mask, http://www.maskmedic.com/paediatric-concept-nasal-mask/
as you can imagine this info is not readily available in consumer report for comparison. just want best option for size needed. we do currently have philips respironics remstar plus system one, still in search of mask....but if it would be better will switch to different system. prong set up as rrt's aware are available but complicated.......

[STL Mark]

In Canada I would talk to:

McArthur Medical Sales Inc
1846 5th Concession W.
Rockton, Ontario L0R 1X0
Canada
Tel: +1 519 622 4030
Fax: +1 519 622 1142
Email rhefford@mcarthurmedical.com
Contact: Roy Hefford

About:
Airon products
http://aironusa.com/accessories/

Like the following:
Nasal CPAP (nCPAP) / Non – invasive Ventilation (NIV) Kits for the pNeuton mini
These kits provide the parts necessary to convert the Neonatal/Infant patient circuit (P/N 58031) for nCPAP and / or NIV patient application. Each kit includes 5 Miniflow tube sets, 3 different size nasal prongs, 3 different size nasal masks, 3 different size bonnets (head caps) and detailed instructions. These kits can be used when it is not known what size prongs, masks and bonnets are required for the patient. The 58235 kit has prongs / masks for very small neonates. The 58235 kit is for full term babies.


P/N 58235 – Nasal NIV Kit, NIC FM, disposable, small, 5 applications, single patient use
P/N 58236 – Nasal NIV Kit, NIC FM, disposable, large, 5 applications, single patient use

Do you prefer this rather than resmed? thank you for any info. also have some info on spec mask, http://www.maskmedic.com/paediatric-concept-nasal-mask/
as you can imagine this info is not readily available in consumer report for comparison. just want best option for size needed. we do currently have philips respironics remstar plus system one, still in search of mask....but if it would be better will switch to different system. prong set up as rrt's aware are available but complicated.......

I saw they had a distributor in Canada. I thought if you wanted to get your hands on one quickly it was an option. There is a big following for the Cardinal Health products like this one.

I'm only tossing ideas out there. You will have to decide. I'm sure what ever you use now will not be the most appropriate in 3 to 6 months. You have quite a project trying to keep up with the options and what is best for now, you also need to keep informed about your next step. It is unfortunate you do not have local medical assistance you can depend on. We love having you here but the suggestion made earlier about a forum with an area specific to pediatric needs is something I would be spending time in also. You need all the help you can get.

[Ciarasmom]

thank you, mark. It is very unfortunate. i appreciate you guiding me towards additional options out there. believe it or not, most pediatric boards still result in finding answers here because as you know infants are so much smaller and harder to fit and these items require special order even if someone physically goes to a particular store, or so i am told. i have been able to locate some of the items i asked about, but it is difficult to describe size, perhaps i should just go to a store and see what they suggest. it seems most stores still need to special order anyway so i thought i may save an extra trip if i were able to locate a particular store with wider variety.

[Janknitz]

If worse comes to worse, necessity is the mother of invention. I wonder if a little nasal mask might work as a full face mask for your child. You will have to modify the straps, but it might be worth looking into. Maybe the Wisp might be a good one to try modifying.

[tetragon]

The Wisp is far too big for that. The mask frame is bigger than a baby's head, and even as an adult, I've had to modify the headgear of my one, due to it not being designed for people who don't have large heads. And I can't see the cushion sealing on a tiny baby's face.

[SleepingUgly]

If worse comes to worse, necessity is the mother of invention. I wonder if a little nasal mask might work as a full face mask for your child. You will have to modify the straps, but it might be worth looking into. Maybe the Wisp might be a good one to try modifying.

No valve, so I wouldn't go that route.

[akcpapguy]

we do currently have philips respironics remstar plus system one,

I would highly recommend against using this device on an 8 month old. How often is your infant on the CPAP?? Who determined your infant has sleep apnea?? How did they diagnose him/her, ie. formal sleep study or home apnea monitor?? Who gave you this device or did you purchase this on your own?? Sorry if you have answered these before.

[Ciarasmom]

Looking for advice, update on this topic, "sleep team" suggesting use of nasal cannula oxygen to resolve apnea.......need support continuing to fight them as I feel this is ridiculous????? Please help me I'm exhausted. Why do I need to keep explaining to anyone with a brain, let alone a doctor, if nasal cannula resolved OSA people wouldn't need cpap. Am I making sense to anyone here?

[Ciarasmom]

Update to info requested, my 8 month old has prader willi syndrome.... She was diagnosed at 2 months old ....the FDA approved treatment is daily injections growth hormone....in order to start treatments many steps must be done so baby can be safely monitored, right now our last step is resolving sleep apnea....so yes she had formal sleep study at realm own children's hospital etc....she has moderately high sleep apnea. First course was to see if removal tonsils/adenoids would improve, we went to ent she was scoped etc, surgery not an option of anything her tonsils & adenoids are tiny. So we must use cpap.......however there's no FDA approved mask in US for infants, the sizes are for 2 and up/ 40lbs and larger. My daughter doesn't come close as she is 8 months old and only 13 lbs....and without growth hormone not going to grow quickly as is part of prader willi syndrome. So we are in a bit of a chicken and egg situation. So I can become a homeless Canadian for a day, or shall I follow doctors next suggestion for nasal cannula? My gut is headed north but I want the forums advice on which is better alternative? Oxygen from nasal cannula or mask such as those aforementioned in this post which are compatible with her cpap machine? Thank you all for caring enough to read my rants.

[chunkyfrog]

As much as the cannula may bother you, and if it's the only thing she can use, then go with it.
The important thing is to do the best that can be done; and have hope.
They will use an appropriately-sized cannula to avoid complications.
Still praying for your little darling.

[Ciarasmom]

Neither bothers me at all, just want safest, most effective treatment. So lets "pretend" I had access to all, is nasal cannula sufficient or should I go with mask? Cannula may be smaller more comfortable but is also drying and does not deliver anywhere near se pressure. Mask is bulky annoying. But which is better treatment?

[SleepingUgly]

I don't think folks here have enough experience or knowledge regarding infant sleep apnea, let alone in the presence of other issues your baby has. If you don't have confidence in what the doctor is recommending, you should definitely get a 2nd, or even a 3rd, opinion, just for your peace of mind. We'd love to help you, but at best there's a handful of us who have used CPAP on an older child, and even that is pretty rare on this forum. If it were my baby, I would seek recommendations from qualified doctors, and look for consensus in what they tell me to do.