My son is 9 and about a year ago after trying diligently to determine the cause of his chronic bed wetting, I discovered some info relating to sleep issues.  It took me twisting the arm of my pediatrician to refer me to the sleep clinic at the university that does pediatric work.  We finally got our sleep study completed, after 8 months of waiting for an appointment and it was determined that he had OSA.  We then went to an ENT who was looking for enlarged tonsils and/or adnoids.  To her dismay, she found neither.  My son does not snore, has never had problems with breathing or with his tonsils.  She was then going to call the sleep clinic and look into the CPAP because she would not recommend surgery because his tonsils and adnoids were fine.  The sleep clinic came back and said they don’t usually give the CPAP to children as a first option, so now the ENT has come back and said we should do the surgery.  I am trying to find any reason to indicate that the surgery would help, when he has no problem with his tonsils or adnoids and never has.  Does anyone know of a case where the tonsils/adnoids were removed anyway just to possibly help the SA.  This seems like an unnecessary risk to take based on the information I have at this point.  I cannot find anyplace where it is recommended to remove the tonsils and adnoids for OSA when they are not enlarged and there has never been a problem with them.  The sleep clinic did agree to give us the CPAP after I told them I didn't want to start with the surgery, but it is another 2.5 months out until we can go in to get it set up.  Many of the issues that the SA has been causing for Jared are in school.  I am so motivated to get something going before another school year starts that now I am going back to thinking of having the surgery.  I don't want to make decisions out of desperation, so am so trying to find anything to tell me that the surgery is the way to go.  Also, does anyone have any other reasons that cause the OSA other than, tonsils/adnoids, tumor in the airway and obesity?  Jared is a healthy active boy.
Thanks so much.

I'm new to all this, too, but I will try to help. My son is going in for tonsil/adenoidectomy in a couple weeks, but he has very large ones.

The way I understand it (and please note that I am by no means an expert) there can be several factors at work at the same time that cause the obstruction. For someone that has a smaller than usual airway on top of low muscle tone, then, even small tonsils could cause an issue. In that case, even taking out small tonsils would open a small airway, right? It works the other way too, a kid can have huge tonsils, but not have OSA. I'm guessing this can occur, because there are other factors in play, like for instance weak or good muscle tone around the tonsils or something- does that make sense? Again this is just my thoughts, someone please correct me if I'm wrong.    

I don't think they've completely figured out all the mechanics that are going on in OSA, especially with children.

Wish I could be of more help. By the way, you might want to post in the pediatric section of the forum, someone there might have had the same experience or be able to help you.

I noticed you mentioned that the OSA has effected your child in school. And that your very anxious to get him treatment. I can so relate to that-I'm desperate, too .  I posted several posts under the pediatric section about the struggles I've had with my son. (Look at the post titled "daytime effects of sleep apnea") Another member discribed her struggles, too.

I moved your post to the pediatric forum where you might get some more responsed from our great parents.

Vicki


_________________
That which does not kill you makes you stronger-Friedrich Nietzsche
Friedrich must of had apnea.

thanks Vicki for moving my posting and kimisita for the good info.  I have never posted anything on the internet, which shows how desperate I am, so don't really know how this works and messed it up.  The other posting on daytime effects of sleep apnea was great.  I was told last year by two separate teachers and the principal at his new school that they thought he had "attention" issues that needed to be addressed, implying ADHD.  Fortunately my son is able to concentrate well in the morning and early afternoon fairly well and actually does wonderfully in school.  That is why we moved him to a different school, one that would be more academically challenging.  It is the afternoon restlessness and peculiar behaviors that lead people to the ADD.  Standing up and sitting down, wandering around the classroom during the middle of a classroom discussion, etc.  He also has huge mood swings in the early evenings that puts the entire household on pins and needles.  Once we discussed his academics with the principal and his teachers, and mentioned the sleep issues that I thought he had (he had not yet been in for his sleep study, but I new in my heart that I had found the problem), she ended up recommending we put him in the TAG program for talented and gifted children!  Go figure.  I had known that Jared was having some sleep issues earlier in the school year, although I didn't know exactly what it was, and had not mentioned it to the school.  I would recommend anyone who has school age children to make sure that the school is aware of the problem so they do not misjudge, as they did with Jared for his first 6 months of the 3rd grade at a new school.  even though Jared has had a chronic bedwetting problem for his entire life and we have talked to multiple pediatricians regarding what might be causing it, ran tests, taken medications and tried every "trick in the book" to correct it, none of them mentioned a sleep apnea problem.  Looking back now, he has obviously had the problem his entire life and we have just been coping.  Too bad more pediatricians aren't more familiar with all the symptoms of sleep apnea.  It could have saved my not so little guy anymore years of miserable nights.  The ent is supposed to be getting us more info on studies that have been done on children who had normal sized tonsils and had them removed to treat their apnea.  thanks again for the repsponse.

Hi Bottsd,

I have a few questions for you, I hope you don't mind.....My 7yo was diagnosed with OSA, had surgery, had cpap and then was told OOPS-  she does not have apnea (that is the short version, the long version is Diary of a mini-hosehead) but does have RLS/PLMD which were effecting her sleep, making it look like she was having apneas.

How did they determine that the adenoids were not part of the problem?  Did they just look or did they order an x-ray of the head and neck so they could actually see.  It is possible to have gigantic adenoids without having any enlargement of the tonsils.

Have they checked for anyother problems? Have they ruled out reflux? I am asking because between the post surgery sleep study and the final(????) sleep study Chris was treated for Asthma and reflux (and food allergies) both of which were contributing to her apnea.  After these were treated she only had 1 obstruction during the entire study.. and no hypopneas (previous study had an AHI of 8)

As for the getting up and walking around in class, has your son been evaluated for RLS?  Did the study say anything about PLMD?  The RLS symptoms in children are more varied than in adults, they can make it very hard to concentrate.  Chris has a tingling feeling (very short) in her back and feet, other times she just goes in circles because she can's stop.....she wants to but her legs won't let her.  Another thing is that at night she needs to have blankets on her legs no matter how hot it is in the house, that helps her legs to stay still while she is sleeping.

What type of doctor is treating your son?  Are they board certified in pedi-sleep?  Who is reading the studies -- if Chris's studies had been read by anyone else she would still be on cpap-- pedi studies are more challenging to read than adult ones.  Chris is seeing a board certified pedi sleep/pulmo doc as well as a neurologist.

Good call on talking to the school, I did the same at the begining of last year, I told them the whole story (as much as I knew) and was there telling them when new things happened.  This prevented Chris from having to repeat 1st grade (she missed at least 1/2 day of school each week).  This year I am going again to try and explain how the rls and rls meds make it hard for her to concentrate/learn.  Apnea in children should not be a secret, it truly effects their lives and how they learn and function.

Susanne

bottsd,  You might want to check out the post titled "anyone not have large tonsils."

 It's sounds like the ENT is doing the homework, which is good. All you can do is gather as much info as you can and try to make the best educated decsision.

Good for you for keeping on top of his learning. It sounds like his new school is a good fit for him, that's great about the gifted program. I can completely relate to the restlessness in the afternoon, too. My son has done wonderfully in his special (behavioral therapy) pre-k class (he was the role model student.) But, when he would get home....wow. Every evening at about 6:00 he starts literally bouncing off the walls! It's crazy....he purposely runs around and smacks his whole body against the walls and furniture.  "?"  I mentioned this to his ped along time ago, and she thought it was something called Sensory Integration. Now, with knowing he has OSA, I am convinced that he does this as a way to fight sleep....wake himself up when he feels tired.

BTW, my son wets the bed, too, and the tech that did his sleep study said that it is probably because of the OSA, and will likely stop when he gets treatment.

I'm pretty new here too, but  just wanted to say welcome to the board- this is a great group of people. Hope that you'll stick around.  Keep us posted on what the ENT finds out.  

Kim

Susanne-  thanks for your reply.  They took an x-ray of the adnoids, that we were able to see imediately on the monitor while I was there.  and the ent said there was no indication of enlargement.  

We haven't looked at reflux, but I will have to do more checking on that because I do not even know what it is.  My son does have allergies to pollen, etc, but no asthma and generally no breathing issues at all.  He takes medication for the allergies though and they get worse about every 18 months or so and we have to change allergy medication.  In my mind it is possible that that could have something to do with this, but the ent says there is no indication that the allergies are creating a problem with his airway.  

Jared is being treated by a pediatric sleep doctor, so I am confident that they are looking at this the right way and I know the technicians and head doctor running the program and who is reviewing Jared's case, are highly recommended (probably why our next study, to get on the cpap is out 2 and a half months).  As for the RLS, they did say that they looked for it during the study.  Based on the original consultation they were actually looking specifically for that, rather than an apnea problem (another reason I was so shocked when this whole apnea thing came up).  they found no indication of RLS.    I am not convinced that they have the whole story though on that one.  His sleep was certainly anything but normal during his sleep study.  I appreciate your descprition of the symptoms of RLS from the child's perspective.  I think I will revisit that with Jared.  Not sure what PLMD, but I guess I'll look into that one too.

I am sorry to hear that Chris had to go through the unnecessary surgery etc, but glad to know you have figured out how to help her.  And very glad you decided to share.  It is just another reason, why I think I will wait on the surgery for now, until I can be more sure of what is happening.

Thanks again