Sleep Apea and Duchenne
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
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
Replies to This Discussion
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Permalink Reply by Chris's Mom..Chris Wade McClusky on
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My son had sleep apnea when he was younger. He had to have his adenoids and tonsils removed. He was snoring really loud and would stop breathing.
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Permalink Reply by MicahsDaddy on
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Micah didn't have sleep apnea, though very close to it. He snored pretty darn loud. Because of him having
DMD, they only removed his tonsils, not the adenoids. They now say if both the adenoids and tonsils are removed, it will cause other issues later on as muscles in that area start to deteriorate...if i remember correctly, it is because of drooping, but i could be wrong. The adenoids, if left in, will help support the area around them.
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Permalink Reply by Danelle Dickerson on
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This is a familiar road for our family. Our baby (now almost 2 - non DMD) was diagnosed for "failure to thrive" at 4 months old. Failure to thrive technically refers to children below the 5th percentile in height, weight, etc. It wasn't that he wasn't alert or active, he just wasn't growing and was a terrible nurser. Thus began nine months of doctor's visits, specialists, testing, etc. He even threw up almost every day for a whole month and spent a week in the hospital. We really weren't sure that he would live. No one could figure out the problem. On spring break a year ago,he was again hospitized with a virus. His oxygen monitors were going off all night. In fact, the nurses turned them off because they had to keep coming in. In hind sight, that was incredibly irresponsible. That led to a sleep study test that showed severe sleep apnea. We begged the otolaryngologist to see us asap. They did surgery the same week to take out tonsils and adenoids. The surgeons discovered that his adenoids were taking up almost his entire breathing airways, He couldn't breathe through his nose. One week later, at just over a year old, he wanted solid foods for the first time. All of the pieces started coming together. He probably couldn't taste food before, so why bother. It was also difficult to eat and breathe at the same time. Growth hormones are excreted in deep sleep and he never had deep deep sleep. He didn't cry because he couldn't and breathe at the same time. We had noticed the funny snoring during sleep, but he was also congested alot, so they were treating him for asthma and allergies, which it turns out, he doesn't have. Our little guy has spent the last year catching up. Looking back, we know God spared his life, as he could have died from SIDS. After discovering this about our baby, we realized that our three other children also have a tendency to snore and also have large tonsils - don't know about their adenoids. Our son, Matthew, with DMD, snored the most and had the largest tonsils, so I started pushing my pediatrician to refer us to have the surgery. I figured that with repiratory problems being a problem down the road, it would be better to make sure all his airways were clear now. No reason for him to work hard breathing in his sleep. We did a sleep study test which showed sleep apnea and had surgery last November. While his tonsils were large, his adenoids were huge, like our baby's. We noticed a day time difference immediately. In the past, I had had to literally drag him out of bed every morning. After the surgery, he gets up, alert, on his own, before he would have to to get ready for school. Before surgery we discussed this with our MDA doctors, our pediatrician, and the otolaryngologists (at the best hospital in MI). No one mentioned what MicahsDaddy wrote about leaving the adenoids in. Seeing the difference in our son, we're glad to have done it and right away, while he was still young (5 at the time).
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Permalink Reply by Kim Innabi on
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Hi Char: My son Nicholas, 12, was just diagnosed with severe sleep apnea last week. One of the reasons he had the sleep study done was because I have been trying, unsuccessfully, to get him on growth hormone (through our insurance, which is Kaiser Permanente). Our endocrinologist wanted to make sure he had no sleep problems because he felt that was as added risk with growth hormone. I did notice that he tended to snore, but he is 96 lbs and 4ft tall, so he is overweight. He also complains of being tired in the mornings, but I thought this was due to getting up and going to school, rather than lack of good sleep! After the results came back I was referred to a pediatric pulmonologist who made the suggestion of trying oxygen before deciding on the BiPap or CPap. I contacted Dr. Finder regarding the oxygen and found out that it is not recommened at all, and could be possibly harmful to DMD boys. I have to now try and get the pulmonolgist to just write the prescription for the BiPap, which is not covered by my insurance plan. I heard they are expensive. Nicholas does have a large tongue and has some dental problems because of the way he used to hold it. You are right, the sleep apnea left untreated causes stress on the heart and other organs. I hope I can get Nicholas situated with his BiPap before this happens!!! I was also told that any boy, especially older ones, that are on growth hormone, should have a sleep study done.
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Permalink Reply by Kelvinsmom - Michelle on
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Kelvin always slept with his mouth opened and snored a lot, it 100% quit immediately after starting Noni Juice. He had slept with his mouth opened and snored a lot since he was born, pretty much, so for 5 1/2 years, then, pow, it quit. I have mentioned this in other discussions, but thought I'd add it here as well. I tell my story of what Noni has done for us at www.trunoni.com, under True Life Noni Stories. I have no connection whatsoever to this company, except to buy their product. Michelle
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Here's something to keep note of:
http://www.ncbi.nlm.nih.gov/pubmed/16150067
Sleep-related breathing disorder in Duchenne muscular dystrophy: disease spectrum in the paediatric population.
Suresh S, Wales P, Dakin C, Harris MA, Cooper DG.
Department of Respiratory/Sleep Medicine, Mater Children's Hospital, South Brisbane, Queensland, Australia.
Duchenne muscular dystrophy (DMD) is a progressive neuromuscular disease with death usually occurring because of respiratory failure. Signs of early respiratory insufficiency are usually first detectable in sleep. OBJECTIVE: To study the presentation of sleep-related breathing disorder (SRBD) in patients with DMD. METHOD: A retrospective review of patients with DMD attending a tertiary paediatric sleep disorder clinic over a 5-year period. Symptoms, lung function and polysomnographic indices were reviewed. RESULTS: A total of 34 patients with DMD were referred for respiratory assessment (1-15 years). Twenty-two (64%) reported sleep-related symptomatology. Forced vital capacity (FVC) was between 12 and 107% predicted (n = 29). Thirty-two progressed to have polysomnography of which 15 were normal studies (median age: 10 years) and 10 (31%) were diagnostic of obstructive sleep apnoea (OSA) (median age: 8 years). A total of 11 patients (32%) showed hypoventilation (median age: 13 years) during the 5-year period and non-invasive ventilation (NIV) was offered to them. The median FVC of this group was 27% predicted. There was a significant improvement in the apnoea/hypopnoea index (AHI) (mean difference = 11.31, 95% CI = 5.91-16.70, P = 0.001) following the institution of NIV. CONCLUSIONS: The prevalence of SRBD in DMD is significant. There is a bimodal presentation of SRBD, with OSA found in the first decade and hypoventilation more commonly seen at the beginning of the second decade. Polysomnography is recommended in children with symptoms of OSA, or at the stage of becoming wheelchair-bound. In patients with the early stages of respiratory failure, assessment with polysomnography-identified sleep hypoventilation and assisted in initiating NIV.
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As for what i mentioned above about adenoids, i am trying to get a hold of my post on the old message board...don't know if it will be possible...but if i do get it, i will add it here as well.
It basically was answers to questions I had over the phone with the pediatric ENT at Rady's Childrens Hospital in San Diego.
In a nutshell...yes, nutshell = my brain trying to obtain info from 3 years ago...the adenoids are near/between the uvula and the soft palate that leads to the nasal passage. If the entire adenoids are removed, then over time, as muscle weekens, that area will start to droop. This will lead to a nasal sounding voice.
Also, with some help today from a qualified individual (Kim mentioned this doctor in her post)...Ok, Dr. Finder...he sent a response which reads:
"In terms of ENT surgery and DMD, this is what I understand:
Patients with Duchenne are at an increased risk of obstructive apnea early in life, prior to the onset of respiratory insufficiency in sleep.
What gets taken out is a function simply of what is enlarged. Removing too much of the adenoids is bad as it can lead to velopalatal incompetance (the back of the throat not sealing properly). But adenoidectomy is more like shaving down a patch of tissue - whereas the tonsils get shelled out like peas in a pod. Some kids will have normal sized tonsils and enormous an adenoid; the reverse can be true as well.
Feel free to forward this along."
My understanding of "velopalatal incompetance or insufficiency (VPI)" is when the soft palate to the nasal passage does not seal. If this happens, not only can a nasal sounding voice occur, but food and liquids could reflux into the nasal passage.
So, it sounds like for those children who have enlarged adenoids, be sure that the ENT does not remove them completely, rather that they, for a lack of a medical word, shave them down, leaving them there without them being a nuisance to your childs breathing and eating.
For Micah, his adenoids were not an issue, his tonsils on the other hand were adult size when he was 4, so we only had his tonsils removed.
Again, if i get a hold of what my ENT told me, I will also post that.
I hope this helps.
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my apologies if my posts are not related to this thread of sleep apnea. I just saw tonsil and adenoids in the begining of the original post and thought i would mention them.
my intent is not to cause fear as I have not dealt with any of these issues, other than my son having over sized tonsils causing him to snore and choke on food....that's my only experience.
the rest that i commented about is because of what our ENT said and what i found by searching the web or emailing people in the know.
for me, i like to read posts from everyone so i can absorb cautions to take in case anything ever comes up in the future, then i am prepared.
please don't take what i say as a parent as what you need to do..i am not a professional. just do your own research so you can make a comfortable decision for your family.
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MicahsDaddy,
That's helpful information - especially when parents might not hear it from their doctors. Thank you for including it.
Danelle
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Permalink Reply by Char Burke on
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Hey thanks all you parents who responded to sleep apnea. This is very interesting and I appreciate the information. I worry about the thought of putting our son under since DMD boys have trouble with anesthesia. I sure you all understand. I guess the first step is to talk to the sleep specialist and then go from there. Thanks again - Char
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here is what i had posted on old message board for sleep apnea and tonsils:
Re: Enlarged Tongue-Sleep Apnea-Cognitive issues-Bedwetting
« Reply #6 on: 05/24/07 at 1:48pm » Quote | Modify | Remove
Ok, I got into contact with the triage nurse for our ENT and this is what she said about removal of the adenoids:
- Can cause extra atrophy or looseness of the muscles in the back of the throat.
- Affects speech and sometimes swallowing.
- Higher chance of this happening with children who have weaker muscles, but can also affect normal strengthed children.
Their practice is to only remove what is broke (if it isn't broke, don't fix it). In Micah's case, he had adult sized tonsils, but his adenoids were very small, so they only removed the tonsils.
Here are a couple links:
Obstructive Sleep Apnea:
http://www.childrensspecialists.com/body.cfm?id=465
Tonsillectomy Frequently Asked Questions:
http://www.childrensspecialists.com/body.cfm?id=467
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My son had a sleep study about a year ago, hes 18 years old now, he was diagnosed with Central Sleep apnea, which I guess from what I understand is more neurological and his Carbon dioxide levels were becoming a problem, its not the same as obstructive sleep apnea, we were already using a bi-pap just at night, but the Pulm. Doctor wanted to tritrate his settings to make sure we had the numbers on the bipap that would benefit him, so thats how we learned he had it, and the doctor added oxygen to be used in connection with the bipap, and we think that has helped him sleep better, I don't think my son realized it was effecting his sleep, he never really complained much. He also now uses the bipap through much of the day since his respiratory function is starting to get weaker.
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