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Please help! - daughter might need T & A

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Wed Sep 28, 2011 2:57 pm Post
I’m new here - I stumbled across this forum in my searches for information on pediatric apnea. My daughter, Samantha is 2.5 years old and I have noticed apnea events in her breathing at night for well over a year. She has always been a very noising breather when sleeping (even as an infant - less than a month old). She is an overall healthy child.

I brought this up with our pediatrician at her well visit a few months ago, and at the time he didn’t think it was cause for concern. Since then I think it has gotten a bit worse and may even be affecting her behavior during the day. Because of this, our pediatrician referred us to an ENT (one of his specialties is pediatric otolaryngology). Samantha’s tonsils are pretty large and an Xray revealed large adenoids as well. I was told by our Ped to keep a log of her breathing events (camp out in her room for 20-30 minutes at night while she’s sleeping) and write down events. When she is sick I think it’s pretty bad, a couple apnea lasting over 10 seconds and a bunch in the 5-8 second range in a half an hour period. When she is well she will still have the random 10+ second apnea but still sounds like she has very labored breathing (mouth breathing). Based on this information of her large glands and my observations of my daughter’s breathing events, the ENT has recommended removal of her tonsils and adenoids. In the ENT’s opinion, she should never be having any apnea or hypopnea events, and that it’s not normal. Is this truly enough information to recommend surgery???!

My concerns are I am not sure what the severity of her apnea is (we have not done a sleep study). Even if her case is considered mild, is it acceptable for a child to have mild apnea? Or are there detrimental effects even in mild cases? I am having a hard time convincing myself it’s necessary. Our Ped is willing to order a sleep study, but talking to the insurance company it’s a pain to get approval for it and even if we did, there is still a considerable amount of out of pocket expense for us. Also, some nights when I monitor her breathing I won’t observe any apneas in the half hour period, other nights I will hear just 1 or 2. What level of apnea does this sound like? Could anyone point me in the direction of any resources or studies that have been done that might show the effects of even mild apnea? Any personal experiences with a similar situation?

Sorry for the long post, I really just don’t know what direction to take next. Thank you for any insight or help!!!
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Re: Please help! - daughter might need T & A

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Fri Sep 30, 2011 1:16 am Post
It is hard to answer the question as to whether it is acceptable for a child to have untreated mild apnea (there are a lot of variables and a lot of caveats, in my opinion), but it gives rise to my personal answer to the question of whether to have a sleep study done, which is a resounding YES. It isn't possible to know, from parental observation during 20-30 minute time periods during sleep whether or not there is mild, moderate or severe apnea, or apnea at all, as opposed to hypopneas. The two main reasons for this are 1) you are not able to determine what sleep stage she is in when you are observing and that can have tremendous impact on a diagnosis (apnea events tend to be more frequent during REM, for example); and 2) there is no way for you to know if, or how much, her oxygen saturation level is dropping during episodes, which is a major factor in determining whether treatment is needed. Nor is it likely that you can be certain whether all of the events are obstructive, as opposed to central or mixed, or whether they are hypopneas. When I began observing my son's episodes, I only saw them occurring a few times in a month, but when he had his first sleep study done, it suggested that he was having many episodes EVERY HOUR. I had been freaked out by observing the few episodes I had observed, but when I saw those results, I didn't sleep for three nights from the anxiety of knowing how much more often he wasn't breathing than I had previously imagined.

If her tonsils/adenoids were so large that the ENT recommended taking them out even if there were no sleep issues, then I might be more inclined to feel like surgery first made some sense, but lacking that, it just doesn't make sense to me to perform surgery to remove body parts which may OR MAY NOT be causing a problem.


Re: Please help! - daughter might need T & A

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Fri Sep 30, 2011 12:51 pm Post
Sleep apnea can trash the cardiovascular system and is a very serious disorder. It is about much more than being fatigued. Finding out what is going on is paramount to giving your child a healthy start in life.

Vicki


Re: Please help! - daughter might need T & A

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Fri Sep 30, 2011 9:04 pm Post
Thank you both so much for your replies! The Xray of her head/neck area clearly showed partial obstruction of the nasal passages because of the adenoid. You could see it protruding out where it shouldn't have been. I think that tied in with her large tonsils and me witnessing apneas over a period of a year or so prompted the recommendation of surgery.
I know a sleep study is the only way to know for sure what's going on, but I'm afraid my daughter would just not cooperate at all (she's very stubborn).

Lorenzomama - after seeing the results of your son's sleep study, was the solution to remove the tonsils and adenoids? If so, did you see an improvement in his breathing, and was he more well rested?

Thank you!!


Re: Please help! - daughter might need T & A

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Sat Oct 01, 2011 1:52 am Post
No one recommended a T&A for my son because he showed no indication of enlarged tonsils or adenoids -- he had reflux, and that was presumed to the be the cause, though we later come to understand that it was more complicated than that (he also had Sensory Processing Disorder and Post Traumatic Stress Disorder). Treating his issues proved to require a very holistic approach -- it wasn't until we put all the pieces of the puzzle together that we saw any improvements.

Have you talked with the doctors about a plan for a sleep study after the T&A if you do it?


Re: Please help! - daughter might need T & A

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Mon Oct 03, 2011 1:38 am Post
Hi lorenzomama, thanks for your reply.
There is no planned sleep study after the procedure (if we chose to do it). I was debating getting sleep study done before the procedure to help decide whether the surgery is even necessary.
It's just a really hard decision to make. On one hand I feel like there is probably enough evidence to justify the surgery (large glands, witnessing apnea for over a year, snoring, mouth breathing, labored breathing at night, acting tired during the day). But on the other hand I feel like I can't sign her up for surgery in good conscious before I know exactly what is going on. Just worried that the sleep study would be a total bust since my daughter might freak out.


Re: Please help! - daughter might need T & A

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Mon Oct 03, 2011 10:19 am Post
If you go the surgery route first, do you have a plan to help her not freak out going into/coming out of that? The trouble, in my mind, with not doing a sleep study first is that I see so many folks on here who are amazed to discover either the extent of, or the nature of, their child's sleep apnea. Sleep studies are also the ONLY way to assure that the surgery was successful. The reason this is so important can be highlighted by son's case, even though he didn't have T&A issues -- we discovered through his sleep studies that he was having little to no REM sleep at all, and that his heart rate was unusually high throughout each study. This had a very significant impact on how we proceeded, not the least of which was monitoring his cardiac well being, since his heart appeared to be running in overdrive during sleep. I had noted a few times that his heart rate was high during sleep, but I had no idea it was staying that way ALL the time, and I had no idea that it was even possible to have NO REM sleep (which turned out, we believe, to be tied to his SPD and PTSD).

In my humble (and I say that genuinely, as I truly have no right answer) opinion, if I were in a situation where I knew that either surgery, a sleep study or both would have to take place, I would go for the sleep study first. It would give me far more information about my child's sleep and overall health connection, it would be a reasonably good indicator and practice for how it would be going into a surgery situation (ie, being in the hospital, etc.) without the inability to turn back or move more slowly, and it would give a baseline for future evaluation of sleep. If you choose to go the sleep study route, let us know and we can give you some tips on preparing her for it, too!

Best wishes to you -- these decision are truly some of the hardest in parenting, where the stakes feel so high and the answers so unclear...


Re: Please help! - daughter might need T & A

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Mon Oct 03, 2011 6:10 pm Post
My daughter was diagnosed with enlarged adenoids by an ENT after a cronic ear infection that would not go away for several months. He diagnosed her pretty much as he walked through the door and noticed her breathing through her mouth. After further exam he recommended the adenoids be removed. This was a simple proceedure, but heart wrenching all the same. My daughter didn't have another ear infection for 10 years. I hope this helps.


Re: Please help! - daughter might need T & A

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Tue Oct 04, 2011 12:53 pm Post
Thank you for your reply! Was your daughter showing signs of sleep apnea as well?

I spoke to the ENT again yesterday on the phone and he still is set on the recommendation of removing tonsils and adenoids. (I think I might be making up excuses for her not to get it at this point). I am interested in getting a sleep study done, but since we need prior approval through our insurance of the necessity of the study I don't think it's going to happen. ENT said he doesn't think it's necessary because it's obvious enough through physical evidence what the next step is.
Also afraid of being an emotional mess leading up to the surgery (if we do it). I don't want to be bawling in front of her. We also have the added pressure of doing it before she turns 3 (in Jan) so she willl be able to stay overnight in the hospital. The ENT said he is denied all the time when recommending that children older than 3 stay overnight. Just kind of frustrated at this point.
My husband thinks we should just do the surgery, but I am not sold yet.


Re: Please help! - daughter might need T & A

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Tue Oct 04, 2011 2:46 pm Post
Ah....((HUGS))....it is hard to anticipate your LO undergoing medical procedures and surgery, there's no getting around that. I want to recommend a book to you, which might help both you and your daughter cope with it. It's called "Trauma Through A Child's Eyes" by Peter A Levine and Maggie Kline. This book is best read, if possible, in advance of any potentially traumatic experience, as it not only does a great job of validating what all parents know (which is that even "routine" surgeries can feel traumatic to both parents and child), and also describing specific techniques for reducing the likelihood of trauma and preventing lasting effects from traumatic experiences. It's great reading for any parent (and the techniques can be easily translated for use with adults, ourselves included). He also has a book called "Trauma Proofing Your Child" which I have not read, but I imagine it has similar information and is possibly more concise.

I wish you all the best.


Re: Please help! - daughter might need T & A

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Thu Oct 06, 2011 3:12 pm Post
I think your daughter has significant apnea. To answer your question about severity- there are many ways to grade severity. There is the apnea/hypopnea index, which measures the number of events you have each hour. But then there is the severity symptom-wise. Things that can be attributed to apnea in children are trouble focusing, daytime sleepiness, restless sleep, mouth-breathing during the day. I would probably have the sleep study done. It helps measure the severity so that you can see if there is improvement following the surgery. But it sounds like (and I couldnt' say unless seeing your child) surgery is indicated. Most children who snore will have some pathologic manifestation- even without apnea. Such as elevated blood pressure, disrupted sleep, etc. I have studied pediatric apnea and adult apnea for many years. It is very underdiagnosed. One reason to treat is to prevent any long term consequences of low oxygen levels on the brain development of children.

Hope this helps.

Brian Rotskoff


Re: Please help! - daughter might need T & A

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Wed Oct 19, 2011 1:30 am Post
Hello lorenzomama and Brian - thank you so much for your replies! I will look into the book about dealing with trauma.
Brian - do you know if even mild apnea can have long term consequences based on your experience with studying pediatric/adult apnea?

I was finally able to get a sleep study appointment for my daughter on November 2nd. The sleep center seems like they'll be good with dealing with kids as they have 2 kids there most nights. They also seem like they will be really patient in making her feel comfortable. I feel like I can't sign her up for surgery without really understanding what is going on. Although based on my observations I feel like the results might indicate surgery (I really hope not though). I know this is not relevant to this board but I have massive amounts of anxiety even thinking about her having surgery. I tend to imagine worst case scenarios and of course I just have to google everything. Being a parent is so hard!!! :-(
Thanks again for any words of wisdom!


Re: Please help! - daughter might need T & A

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Thu Oct 20, 2011 12:18 am Post
The degree of severity can be subjective. How do you measure it? Do you measure by the number of apneas or hypopneas? Or by symptoms? To answer your question- most doctors don't know how to measure severity. I think ten years from now we will measure severity in a vastly different way. I would look at symptoms such as daytime sleepiness, trouble focusing, mood issues etc as measures of severity.


Re: Please help! - daughter might need T & A

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Thu Oct 20, 2011 12:21 am Post
I always lime to have a sleep study. No adult would have surgery for apnea without a sleep study. If the apnea is severe by objective measures then the post op period may be handled differently. I would have it done. Then you have something to compare to after surgery.


Re: Please help! - daughter might need T & A

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Thu Oct 20, 2011 1:32 am Post
KathleenJ wrote
I know this is not relevant to this board but I have massive amounts of anxiety even thinking about her having surgery. I tend to imagine worst case scenarios and of course I just have to google everything. Being a parent is so hard!!! :-(
Thanks again for any words of wisdom!


Parental anxiety is totally relevant to this board, because I'd be pretty surprised to hear that any parent on here hasn't experienced it in relationship to their child's apnea. Please never feel that your experience of this process is not a part of the purpose of this forum. The technical and experiential information available here is great, but so too is the emotional support of just knowing that you can connect with other parents who have had similar experiences and who truly understand the feelings that go hand in hand with the knowledge or suspicion that one's child has sleep apnea.
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