Sleep Apnea/BiPap mask??

Taylor - posted on 08/22/2010 ( 7 moms have responded )

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My 2 1/5 year old son (born with spina bifida,chari malformation) has had sleep apnea since birth. He was put on oxygen at night. Recently he had yet another sleep study...now they want to start him on the bipap mask. Im still getting used to having him on oxygen..now this. Any moms out there going through this or have gone through this. How did you and your child adjust?

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Kerry - posted on 08/29/2010

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Hello - Im afraid I dont have any great advice. My son is 10 and had Mitochondrial Myopothy - he now has to use bi-pap too but hates it. He has tolerated tons of medical procudures, major surgery but hates the bi-pap. First we tried waiting till he fell asleep but he woke right up once we put mask on. We have finally gotten to the point that he will wear it while I read him a book or two and will fall asleep with it on - about 2 hours in he wakes up and pulls it off. I guess my advice is get him used to it at this early age . We are just going to keep at it until he will do it all night. I hope some other moms post some advice for you becase I need it too. Good Luck,

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Katie - posted on 08/19/2011

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I have a son who is 4 and has Complex Sleep Apnea and sleeps with Bi-Bap. There is no easy answers I have found to help adjust a child. We tried him on CPAP and he never tolorated it, he would pull it off after an hour or so. Finally we found a doctor who believed Bi-PAP was the way to go, he listened to everything I told him and sent me and Andrew home with the machine he also gave him a medicine for panic attacks which also made him sleepy, and andrew loves to sleep in his own bed so I bought a baby monitor with a camera and set my alarm clock for every 2 hours and checked on him by looking at the monitor if he had his mask on great I left him alone and went back to sleep if he had if off I got up and went and put it back on after about a month and half of being on the medicine and being consitent with putting it back on he now sleeps about 8 to 10 hours on it. We also tried differnet mask andrew perfers the full face mask with a bonnet. I also bought him a pillow that is a foam because he likes to sleep on his side or stomach. I would love to keep in touch because there is not many of us moms out there with special children. It was very hard and andrews doctor is 4 hours away because I could'nt find a doctor who believed that something was wrong. I have a picture of him sleeping with his mask on if you would like to see it.

Suzanne - posted on 09/11/2010

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Hi Taylor
My son wears a bi-pap mask at night - he has cp (low tone), hearing and vision impairment and is PEG fed. He first had oxygen at night and during the day (we had to push for this) at 2 1/2 and then had a sleep study showing he had obstructive and central sleep aponea. He then had to wear a bi-pap at night. I was really dreading using it - I really thought it was going to be a struggle. I was really surprised when my son just tolerated it and went to sleep! He enjoys being cuddled and snuggles into you as much as he can so I guess he did not mind the firmness of the mask. I was amazed at how alert and full of beans he was the next day - and he had a lovely colour. He has had alot of respitary issues (pneumonias and flus) so his respitary doctor said it would help to keep his chest healthy. I would definitely persist with the mask - once your son gets used to it and realises it makes him feel better it will be much easier. It sometimes helps to get my son off to sleep! Good luck - I hope you get a pleasant surprise too! Suzanne

Rebecca - posted on 09/05/2010

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My son Elijah who is now 7 years old has Chiari l Malformation. He gets frequent headaches and has had a Chiari Decompression a few years ago. recently he has begun to complain of stiffness inhis legs. I spoke to his nuerosurgeon who has scheduled him for an MRI. I am hoping for the best but scared for the worst....that he may require another surgery for this. HAve you had surgery for this? How do you do with it?

Mandy - posted on 08/31/2010

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im no help with the bi-pap but what lured me to this post was the mention of Arnold Chiari Malformation. I have type 1 and i was curious to know how your children handle it and what type do they have. my doctors told me i had to wait until my daughters are 9 to see if they inheretied it from me.

Rene - posted on 08/30/2010

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Hi, I know what your going through, I have a 7 yr old boy born with spina bifida w/ chari malformation. we learned when he was a yr that he had sleep apnea. we tried many things, put a 2nd shunt in and had a decompression done, they didn't seem to help, I tried a bipap machine on him when he was almost 3 and it didn't go well, he screamed (because it scared him) then we decided to have a trach put in so he could be on a ventilator at night. trust me its not as bad as it sounds we have had the trach 5 yrs this Sept. and he is doing awesome. he's in main stream 2nd grade, he talks very well with is passy on (that's what we call the speaking valve) I know it is all very scary right now for you and hearing everything will work out and be ok is really not what you want to hear you just want a good night sleep and it all to be over. but I sleep through the night most nights now and I'm more comfortable with the trach and vent then I every thought I would be back when I was trying to talk the doctors out of it.

B.Jane - posted on 08/30/2010

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My daughter is seven and tolerates the Bipass with oxy. attatached. She does have to wear arm retraints as she wants to pull it off but once she is asleep I can remove them. The two in one works very well and we notice improvemnet in all areas during the day since she is breathing well at night.

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