I am just wondering if there are others who have had their son diagnosed for sleep apnea. I ran into a mom that daughter just had her tonsil and adenoids out since her daughter was diagnosed with sleep apnea. The mom said that the doctor did a sleep study on her and they found that she was not getting enough oxygen and good REM sleep. This 6 year girl was actually kicking in her sleep to restart her breathing. The mom was telling me that her daughter had always struggled with sleeping and that she was also very quiet and was subject to melt downs, etc. Her daughter was not over weight - actually quite thin....The doctor had said that it is not the size of the tonsils/adenoids but there has to be a physical air space at the back of the mouth/throat to allow the airway to be functional. Her mother reports that her teachers notice quite a difference in responsible speech, that she is able to play with her younger sister without getting in fights and that she is able to focus better.
With our boys being DMD, there is a component that seems to lend itself to our boys having this sleep apnea...Their tongues are usually larger and can cause a tight space even tighter. Just wondering if any parents have had sleep apnea diagnosed and what they have done about it.
One more thing - sleep apnea can cause extra stress on the heart as well as other major organs.
Char Burke

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One of Kelvin's doctors in Cincinnati, said that she believes that the Noni Juice helped reduce the swelling/inflamation of his tonsils/adenoids as well as increased his immunities, which she feels is why Kelvin now sleeps so well, no longer snores and no longer sleeps with his mouth open, which he has done for 5 1/5 years. No one had ever said that Kelvin's tonsils or adenoids were larger, but we suspect that was the situation. I actually have huge tonsils all the time, but as an adult they haven't wanted to remove mine. Michelle
Michelle,

I came across this info while looking into the Noni juice you have been talking about. It said that noni juice is high in potassium and should not be taken by anyone on a ace inhibitor. Just wanted to put that out there as there are many boys here who take an ace inhibitor.

Kelvinsmom - Michelle said:
One of Kelvin's doctors in Cincinnati, said that she believes that the Noni Juice helped reduce the swelling/inflamation of his tonsils/adenoids as well as increased his immunities, which she feels is why Kelvin now sleeps so well, no longer snores and no longer sleeps with his mouth open, which he has done for 5 1/5 years. No one had ever said that Kelvin's tonsils or adenoids were larger, but we suspect that was the situation. I actually have huge tonsils all the time, but as an adult they haven't wanted to remove mine. Michelle
Meant to add this to my post, sorry.

http://www.mayoclinic.com/health/noni/AN01074
Thanks, sorry, true. I need to be slower and cover all bases. I forget so many kids take so many different things. Thanks for catching it. Also, Kelvin only takes 1/2 once right now, not sure how much Potassium is in the little bit he takes, but it sure did help him a lot. I'm sure some day he could end up on an ace inhibitor. I'll have to make sure of watching that as well. Kelvin also loves bananas and other fruit, mostly all he eats. He loves fruit so, so much. Bananas have potassium too. Michelle

Janine said:
Meant to add this to my post, sorry.

http://www.mayoclinic.com/health/noni/AN01074
Justin(almost 13) had his first sleep study when he was 6yrs old. He had horrible night terrors and we were trying to get to the bottom of it. His sleep study showed that his oxygen levels dropped into the 80's alot at night. He started using a c-pap at that time. He slept very well after that. he used the c-pap for about a year or so. We have a consult for another sleep study at the end of this month. Justins lung function is now at 84% and an at home overnight monitor showed his oxygen levels are dropping and staying in the upper 80's. Looks like it is time for a bi-pap at night.

On another note, Justin had his tonsills and adnoids removed at 3yrs old(before dmd diagnosis). He would snore loudly at night and stop breathing. His tonsills and adnoids were the size of an adult male.

--Samantha
Samantha Dearing said:
Justin(almost 13) had his first sleep study when he was 6yrs old. He had horrible night terrors and we were trying to get to the bottom of it. His sleep study showed that his oxygen levels dropped into the 80's alot at night. He started using a c-pap at that time. He slept very well after that. he used the c-pap for about a year or so. We have a consult for another sleep study at the end of this month. Justins lung function is now at 84% and an at home overnight monitor showed his oxygen levels are dropping and staying in the upper 80's. Looks like it is time for a bi-pap at night.
Hi - Thanks for responding. Did you see any improvement in focus and attention after the c-pap? What is the difference between the c-pap and bi-pap?

On another note, Justin had his tonsills and adnoids removed at 3yrs old(before dmd diagnosis). He would snore loudly at night and stop breathing. His tonsills and adnoids were the size of an adult male.

--Samantha
Char Burke said:
Samantha Dearing said:
Justin(almost 13) had his first sleep study when he was 6yrs old. He had horrible night terrors and we were trying to get to the bottom of it. His sleep study showed that his oxygen levels dropped into the 80's alot at night. He started using a c-pap at that time. He slept very well after that. he used the c-pap for about a year or so. We have a consult for another sleep study at the end of this month. Justins lung function is now at 84% and an at home overnight monitor showed his oxygen levels are dropping and staying in the upper 80's. Looks like it is time for a bi-pap at night. On another note, Justin had his tonsills and adnoids removed at 3yrs old(before dmd diagnosis). He would snore loudly at night and stop breathing. His tonsills and adnoids were the size of an adult male.

--Samantha

Hi - Thanks for responding. Did you see any improvement in focus and attention after the c-pap? What is the difference between the c-pap and bi-pap? Char Burke
We saw a big difference in Justin. He went to sleep at 9pm and slept soundly until the next morning. he wasnt as hard to wake up, didnt sleep after school, and his grades came up. he stopped complaining of being tired and headaches. He outgrew the need for it and his sleeping was really good until a few months ago.
The CPAP(continuous positive air pressure) machine blows air at a prescribed pressure (also called the titrated pressure). The Bi-Pap(bi lateral positive air pressure)provides two levels of pressure: Inspiratory Positive Airway Pressure (IPAP) and a lower Expiratory Positive Airway Pressure (EPAP) for easier exhalation.

--Samantha
Joshua is 6 and just saw his respirologist today and is going to be going for a sleep study in the next couple of months. The reason why is because his dad just went for one and is going to possibly given a machine and Joshua will go to sleep with his head on the pillow and do a complete 180 during the night so not getting the rest he needs. He doesn't snore, but he doesn't get a full nights rest even though he is in bed from 8pm until 7am. He sleeps on the way home on the bus which is only a 1/2 hour ride as well. My husband will be getting the machine so I am hoping Joshua will be able to get his tonsils or adenoids or both out to remedy this. Thanks for all the information everyone gave so we have some idea as to what to expect.

Naomi

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