Toddler on cpap

[mommyunderwater]

I have a three year old boy, who was 2 months premature, he weighed 3lbs 2oz had sleep apnea in the nicu but they never sent him on anything, at 16 months age adjusted he started having severe seizures that were status, meaning unresponsive to meds, he was dx with Dravet Syndrome, which is intractable epilepsy, that causes autism, and behavioral, gastrointestinal, growth/orthopedic issues, among developmental delays.

We just had sleep study done and he has severe combined apnea, with hypopneas, and PLMD, he doesn't ever hit the REM stage of sleep.

We were given a few masks( full face and whisp) to play with to get him desensitized, nothing i have done is helping or working, i cannot get him to wear it what so ever without him hitting, biting, scratching and screaming, if i put it on at night he starts hyperventilating to no end

I am scared of the stress its causing because if he gets too stressed or overheated he seizes.

I have tried bribes, sticker charts, money, toys, chuck e cheese, you name it, idk what else to do

[Cardsfan]

If you look at http://www.snugglehose.com, they have items for children. Mask covers that look like animal ears and are soft material. Could something like that help. They also have special weighted blankets.

[Julie]

Have you discussed potential sleep aids with his pediatrician? At 3, he's unlikely to adjust as well as you might like him to all by himself, though there are child size masks if you haven't been told.

[mommyunderwater]

yes he cant have any sleep medications due to how severe the central sleep apnea is and due to his risk of sudden death from his epilepsy disorder.

we have a weighted blanket but he hates that too so hard

[Julie]

I think you might have problems beyond our normal capacity to help. I presume he's under the care of a pediatric neurologist, but on the off chance that he isn't, I'd want to see one asap. Not a good situation and it's frustrating to not easily come up with a useful answer, which is not to say there aren't any, but right now I'm not sure what else to suggest. I hope others can. Again, I presume you've tried fave music while he's going to sleep? Making a fantasy game out of things where he's the monster (Darth Vader, etc)? Are you sure there isn't a group there that the hospital could refer you to for support (and ideas) where other kids with seizures are discussed and some with apnea? Don't envy you.

[mommyunderwater]

Thanks Julie.

He is under a whole team of physicians, but you know how doctors can be, talked to his sleep specialist and neuro today and they basically told me we have a month to get him used to his mask or hes being admitted on bipap and vented if need be.

its frustrating.

I am on a forum for his syndrome. I am going to try and call a manager at the local Chuck E Cheese place and see if they will help me out to make up a reward for him wearing it.

Somethings gotta give right?

[LSAT]

You might get some help here.... http://www.sleepapnea.org/treat/childre ... apnea.html

[rohdej]

You say nothing of the pressures used. He may be telling you something. At pressures under 5, I hyperventilate. At pressures under 5 there is not enough air volume flowing to flush exhaled air. Oxygen levels in the air would go lower and I would hyperventilate until i took off the mask. Disable ramp mode at starting pressures under 10. If you haven't already, get an adult mask for you to experience what he is going through. I was highly disappointed in my wife who would not wear the mask for 5 min just to understand what I would be going through.

[mommyunderwater]

I haven't mentioned pressures because I dont have a machine, they wont let us take a machine home until he is "desensitized" to the mask, the peds mask fits my face, i wear it around the house, i pretend to be an Astronaut, or a deep sea diver under water, ive put it on his animals, his baby dolls...

My parents have worn it, our respite nurse, and clinician that comes to the house..

Please leave the judgement out of this, i do everything I can to make it as easy as possible for him as hes gone through the ringer in his short 3 years. I came here for support but feel attacked.

This forum is useless.

[rohdej]

This forum is as useless or use full as some of the good/bad questions asked. Yours is a good question. People with autism have lots of sensory issues. Most of the adults on this forum probably don't have to deal with those issues. Your question may be better suited to an autism forum that deal with how do you keep a shirt on an autistic child. My experience with aspies is that they don't like tags or textures. Your child is a puzzle that you will need to figure out. Don't give up!

[BlackSpinner]

I haven't mentioned pressures because I dont have a machine, they wont let us take a machine home until he is "desensitized" to the mask, the peds mask fits my face, i wear it around the house, i pretend to be an Astronaut, or a deep sea diver under water, ive put it on his animals, his baby dolls...

My parents have worn it, our respite nurse, and clinician that comes to the house..

Please leave the judgement out of this, i do everything I can to make it as easy as possible for him as hes gone through the ringer in his short 3 years. I came here for support but feel attacked.

This forum is useless.

Without pressure a mask is very unpleasant to wear. You can't breathe normally. With pressure it is much more comfortable.

[MyIdaho]

I haven't mentioned pressures because I dont have a machine, they wont let us take a machine home until he is "desensitized" to the mask, the peds mask fits my face, i wear it around the house, i pretend to be an Astronaut, or a deep sea diver under water, ive put it on his animals, his baby dolls...

My parents have worn it, our respite nurse, and clinician that comes to the house..

Please leave the judgement out of this, i do everything I can to make it as easy as possible for him as hes gone through the ringer in his short 3 years. I came here for support but feel attacked.

This forum is useless.

We do feel your stress. I can't imagine the challenges you are facing... But, don't be too quick to write off the comments as "useless". rohdej's comment was very appropriate and maybe very helpful for you to find out. Yes, too low of pressure made this 58 year old man panicky and I was in complete control to stop it... I can't imagine how terrifying too low pressure would be to a toddler... Find out, for your child's sake.

[ChicagoGranny]

Please leave the judgement out of this, i do everything I can to make it as easy as possible for him as hes gone through the ringer in his short 3 years. I came here for support but feel attacked.

Prayers for God's comfort on you and your son.

Yes, this forum, including myself, can be brutal. There are reasons for this that have nothing to do with you or your son.

This forum is useless.

As you and your son make progress, you may come back and find the forum is of some good use.

May God's blessings be on you,

[Janknitz]

So sorry what you are going through. But a few suggestions if you are still here:

If your son doesn't already have an occupational therapist on his team, please ask for a referral. An OT can help with the sensory issues involved in wearing a mask, and adapting masks for fit, comfort, and acceptance.

I second the suggestions that a mask must be fit and tried at pressure--it's a very different experience without pressure and just getting him to accept a mask without pressure doesn't correlate to using the mask.

It sounds like your son's team is not very supportive of YOU and what you are going through to help your son. Are you working with pediatric specialists? Are your services through a dedicated pediatric hospital? Even if you have to travel, it may help to seek second opinions from a pediatric specialty hospital/clinics in a large city or affiliated teaching hospital if that's not what he has already.

There's so much pressure from medical professionals. They all think that THEIR issue is the most important one and you HAVE to do X, Y, or Z for them, never realizing how much is on your plate from all the specialists and providers. I learned early on in my journey as a parent of a special needs child that there was only so much I could do and only so much to expect of my child each and every day. You end up sorting out the most important issues and being a gatekeeper. Sometimes you have to let the "team" know when it's simply too much.

A physician who comes on with a threat is not being supportive of either of you. I'm not a confrontive person by nature, but I would have given that physician a piece of my mind. "I am doing the best I can with my son. This is challenging because of his sensory issues. I don't need threats. I need your support to find the best way to help him, and clearly this is not working."

Also, never forget that YOU are in charge of your son's care. Don't let them override your instinct. You can fire doctors who fail to listen or work with you.

[jnmv1969]

First and foremost, thank you for being an incredible mom and for fighting so hard for your child. Even though I don't know you, I want to say how much I appreciate just how hard you are working.

One thought about helping your child get used to the mask: one way that children get over their fears is through laughter, lots and lots of laughter. Is there a way you can help your child laugh (but not by using tickling). One thought that comes to mind is to try and treat the mask like a "hot potato" that you mom are terrified of in a very silly way. So, for example, you touch the mask with your pinky and then back away from it playfully scared. The idea is to give your child the upper hand, to reverse the balance of power, so that s/he can overcome her fear of the mask. You have had great ideas around playing with the mask, and having others put it on, so this is just adding to what you have smartly been doing. Anything you can do to get your child to laugh is going to help him release the tension that s/he has attached to the mask, and hopefully keep him from overheating. Just don't resort to tickling, especially for a child with sensory issues.

As for the pressure, yes, 5cm might be too little - I know that I also feel claustrophobic at that setting, and it is hard to breathe with just the mask on and no air.

One last thought: we have an autistic child in my extended family. He's on a very restrictive (but healthy) diet, and it's helped him make great strides. He was suffering from seizures, failure to thrive, and on about 16 meds. He's down to 4 meds and the seizures have stopped, and his development is slowly coming around. He was at first on the gluten-free, casein-free diet, and now he's additionally on the selective-carbohydrate diet with regards to fruits and veggies.

Good luck, I am rooting for you and your child.

Hugs,
JV