I am new to this and am looking for some input.  
My son is going to be 5 in 3 weeks.  He had a sleep study done last week and we got the results yesterday.  He is having episodes of hypopnea and central apneas.  The ENT said that his tonsils and adenoids were not enlarged, an xray was done.  He has asthma and allergies.  The ent recommended Singulair.  He had a reaction to it.  She said that we could go through a T&A or try nasonex.  Nasonex was not covered by insurance, so we are going to try the generic for  flonase.  She said that CPAP would not be used unless a T&A was done, and there was no change.  My 2 daughters had T&a's on 10/2.  for other issues.  I would not recommend  doing his to anyone.  Hind sight is 20/20.  This is all new to me.    I feel so lost.

It would be helpful to have a bit more data and if you don't have a copy of your son's sleep study report I would advise you to get one. Ask for the complete study and not just the Summary/Impressions. It might also be helpful to know more about your son's asthma and allergies.

I want to preface what follows by noting that I have no particular expertise in sleep apnea, and that my knowledge level about pediatric sleep apnea is even lower than my knowledge level regarding sleep apnea in adults. Having said this, I think that some of the issue and questions I have would be:
-what were the results of your son' study, how long did he sleep, how many apneas did he have (and how many were obstructive, how many central, how many mixed) and how many hypopneas?
-Based on the answers to these questions, the next step would be to look at what could be contributing to his apneas and hypopneas. In particular, is there a link between the asthma and allergies and the apneas and hypopneas?
-what problems/symptoms led you to seek help fo your son with respect to his sleep?
-how well controlled is his asthma?

I understand that a T&A is the usual first-line treatment for obstructive sleep apnea in children. If your son's problems are primarily central apneas (where there is no intake of air into the lungs for a designated period and no discernable effort to breathe) I am not sure whether T&A would be the recommended first line treatment (it might still be for all I know). If the problem is primarily hypopneas (periods of significantly reduced intake of air into the lungs) and given your son's asthma and allergies, it would seem worth looking into whether these could be contributing to his hypopneas. If your ENT has been treating his asthma and allergies, then the ENT may be able to compare your son's waking air intake and help figure out whether you have a primarily asthma problem or a pediatric apnea problem.

Please bear in mind that while it might seem easy to think of your son's problems as being central apnea or obstructive apnea or asthma, that there may well not be any easy distinction to be made between these.

Also, I would ask if your son's ENT (whom I presume is a pediatric ENT) is also certified in sleep medicine (which she/he may be). If not, I would consider requesting an opinion from a sleep specialist with a lot of experience with sleep disorders in children (and it may be that your ENT used just such a specialist for your sleep study). If another specialist did the sleep study, I would recommend that you talk with this other specialist as well to try to get his or her idea as to what is going on with your son's breathing at night.

Another question I would have is whether the doctor's statment regarding needing to try a T&A before trying CPAP is a reflection of your insurance company's policies, or the protocol followed by her practice. If it is based on an interpretation of your insurance company's policies, I would recommend that you contact your insurance company to confirm this.

If your son's treatment situation comes down to T&A or sticking with treatment that does not fully help him, feel free to ask for a second opinion.

I know this is a trying time and you and your son have my sympathies.

Perhaps some of the other parents and other folks with knowledge about pediatric apnea might be able to provide some better advice or support. Do keep us posted on how your situation develops.

Best wishes,
Bill

I got the results from the Sleep center.  His asthma is  controlled quite well.  He has never had to go to the ER with it.  His sleep efficiency was 85.9%.  His ave SaO2 was 97% and the lowest recorded was 94%.  We are going to try Flonase as an alternative to T&A.  If it does not work, then we will proceed with a T&A.  The ENT and I both feel that if we can avoid surgery it would be the best thing.  The nadir occurred in associated with a 27 seond obstructive hypopnea occurring with the patient sleeping supine during REM sleep.  Loud snoring with mouth breathing was noted.  Evaluation of the upper airway is indicated.  An xray was done and no enlarged tonsils or adenoids were noted.

jgoebel wrote:

I got the results from the Sleep center.  His asthma is  controlled quite well.  He has never had to go to the ER with it.  His sleep efficiency was 85.9%.  His ave SaO2 was 97% and the lowest recorded was 94%.  We are going to try Flonase as an alternative to T&A.  If it does not work, then we will proceed with a T&A.  The ENT and I both feel that if we can avoid surgery it would be the best thing.  The nadir occurred in associated with a 27 seond obstructive hypopnea occurring with the patient sleeping supine during REM sleep.  Loud snoring with mouth breathing was noted.  Evaluation of the upper airway is indicated.  An xray was done and no enlarged tonsils or adenoids were noted.

Bill has given you some excellent advice, but some more info is required.

Average SO2 at 97% is OK, but is it OK for a child ?? You need to find this out, because children should not be starved of oxygen to any degree as it is imperative to their development. Did they tell you for how long the SO2 dropped to 94% ??

Unless I'm mistaken, flonase is a nasal spray (with a steroid) ?? If there are significant Central events this will have little or no effect.

What was your child's AHI ? and what was the breakdown (Obstructive/Central/Mixed) ??

Please post back.

Daniel.


_________________
The untreated Sleep Apnoea sufferer died quietly in his sleep.......
Unlike his three passengers who died screaming !!!!!!

(Anon)

Apnea/Hypopnea Index:2.4 per hour
Total respiratory events:16
Central Apneas:1
Mixed apneas:0
Obstructive apneas:0
Hypopneas:15

The ENT said that normally she would not be concerned because the AHI was under 5, but since he was not lying down, his actual rate is higher.  She also said the 27 second obstructive hypopenia was something to be considered.  The sleep doctor also agreed with her.  She does not like to see SaO2 lower than 94%. I was told if it is less than that, you should start to be concerned.  The results do not  tell how long the SaO2 was at 94%.  Thanks for the input!!!!

This is a direct quotation from the hospital's website.  "Based on the laboratory test, sleep apnea is generally considered significant in children if more than 10 apnea episodes occur per night, or one or more occur per hour. Some experts define the problem as significant if a combination of one or more episodes of apnea and/or hypopnea occur per hour of sleep."

jgoebel wrote:

Apnea/Hypopnea Index:2.4 per hour
Total respiratory events:16
Central Apneas:1
Mixed apneas:0
Obstructive apneas:0
Hypopneas:15

The ENT said that normally she would not be concerned because the AHI was under 5, but since he was not lying down, his actual rate is higher.  She also said the 27 second obstructive hypopenia was something to be considered.  The sleep doctor also agreed with her.  She does not like to see SaO2 lower than 94%. I was told if it is less than that, you should start to be concerned.  The results do not  tell how long the SaO2 was at 94%.  Thanks for the input!!!!

An AHI of under 5 is fine for adults...............but I don't think that it's OK for children. I vaguely remember a post (I think from SleepDave) that any disruption in breathing where children are concerned can be a problem. There certainly seems to be an obstruction.

The ENT and Sleep Doctor should be giving you more information. For the present using flonase may help, but another study will be required to ensure that it is working.

Daniel.


_________________
The untreated Sleep Apnoea sufferer died quietly in his sleep.......
Unlike his three passengers who died screaming !!!!!!

(Anon)

Hi!

Boy, this is a tough one to call, I can see your delima. My own son's apnea was very cut and dry. His tonsils and ads were huge, and there was no doubt wether it was the cause of his apnea. the T&Aectomy has been 100% effective in treating his apnea. Having those suckers pulled out was the best thing we could have ever done. That said, I have read many, many posts here and it seems there are quite a few kids out there who, unlike my own son, do not have enlarged T&As but still have apnea......

Better yet, I have read posts about children who have had a T&Aectomy, which worked for some years, but then the apnea comes back...........--------??????????????-------

Either way, treatment seems to be somewhat consistent - the docs try one thing, if that doesn't work, they try something else, it can be a real guessing game. They usually try pulling the tonsils and/or adenoids first, if that doesn't work or stops working, they try cpap.  

My son does not have asthma, but I can imagine how it must add to the confusion about the apnea and treatment. I think justplainbill put it best, that there may not be an easy way to distinguish the asthma, alergies, and apnea from eachother. There are alot of parents who have posted here whose children seem to suffer from a combination of those same three things. Wether one causes the other, or one leads to the other, or one is a result of the other is very much up for debate. All we know is that they certainly seem to go hand in hand, at this point.      

I can certainly see your hesitation about jumping into another tonsilectomy, after recently going through it with your two daughters. It is surgery, after all, and shouldn't be taken lightly. I don't see where it would hurt to try the flonase first, see if you see an improvement---if not, then rethink the T&Aectomy.

I wonder if you can determine wether his primary issue is asthma or apnea by the sound of his breathing at night. What I mean is, asthma involves chest weasing, right? When your son is asleep, try putting your ear to his chest. Do you hear weasing? My theory here--and it's just a thought--I am not a doctor, but with apnea the obstruction is in the upper throat, and it would make sense to me that it would "sound" different than the lower weasing associated with asthma.----????????----- (If anyone has something to add here, please do.....I'm curious about this now, too.)

Good luck, let us know how the flonase works out....keep us posted.
Welcome to the forum.

Kim

We were at the doctors a month ago and he his lungs checked out ok.  I thought he was starting to get pneumonia so I took him in.  The ped. said that it was the beginning of an upper respiratory infection.  He was put on more antibiotics.  I'm sick of my kids being on medicine.  there are times when it cannot be avoided.  I've listened to him, and it does not seem to be chest wheezing.

He has been on flonase for about 2 weeks.  It is doing nothing for the apnea but it certainly is making his nose run.  He went to the ped. about 2 weeks ago.  He ended up having 2 ear infections and one ruptured blood vessel in his ear.  He was put on Omnicef for 2 weeks, pulmicort for 15 days, xopenex every 3-4 hrs for 2 weeks, and orapred for 5 days ( he is starting a second round today).  The ped called today and said she was going over the sleep study results.  She says that any hypopnea or apnea episodes are bad.  She wanted to know if we had an appointment with the ent to have his tonsils out.  Her opinion is that if it is apnea, meds will not work.  I don't know how much I agree with her, but I do agree that it is time for them to come out.  His ent appointment is on Dec. 12th.  The T&A will probably be the 2nd week of Jan.

I am sorry to hear that things have been so rough for you and your son over the past few weeks. I hope things take a turn for the better for him real soon. Let us know how things go with the ENT.

Best wishes,
Bill

We went to the the ENT on wed.  Since the flonase is not seeming to work, We are going to proceed with a t&a on Jan 8th at the University of Chicago.  Update later