We just found out the our 3 yr son has sleep apnea.  He has central and obstructive apneas.  We finally got the Dr's to push for a sooner MRI.  Beening a parent you can't wait a month to find out that there is something wrong with your child.  Can anyone give us some insite on what might happen in the next couple of months or longer?  It is hard to keep looking up web sites and seeing the same information, I feel that other parents that are dealing with the same experence would be more helpful.  

Any information would be great, we go on Monday (6/18) for his MRI and then wait till the end of the week to get the results from the DR.  It is going to be a long week!

Worried parent[/color][/color]

To get the best information, you need to post this under the pediatric sleep apnea heading. That way other parents with OSA kids can help you out.

Moved to pediatric forum where you might get more help.

Vicki


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

Hi there,

Sorry to hear your son has apnea.  I'm happy that it was caught early.  My 7yo DD Chris has OSA and she is now on cpap.

What is going to happen next........Has your child ever had an MRI done?  (Chris has had 3--2 prior to OSA and 1 after OSA diagnosis) If not here is what to expect (in our experience at the children's hospital)...they will take your child (and you) to a prep/holding room where they will have him change into a hospital gown....do the basic height/weight measurements and that sort of stuff......then they will give him an IV for the contrast media as well as the medication for sedation (I am assuming he will be sedated).  The first time DD went in for an MRI they used a medication just to make her sleepy and keep still....the last time she went in they actually gave her general because they needed to maintain her airway better than they could with sedation.  The last time she had her MRI they mentioned that they might keep her overnight so they could monitor her breathing afterwards---so you might want to ask so you can be prepared (but they did decide not to keep her).  After MRI's Chris was always very sleepy and would have a sore throat.  This last time they released her after she ate a little of a popsicle.  At home she would just sleep for the rest of the day and then the next day she would be fine.  You might want to ask them to give him some anti-nausea medication to make his life a little easier after he wakes up (Chris has a terrible time waking up and has become so sick from the sedation that she required a trip to the ER at 2am)

Now that the MRI is done, they will be looking at the development of the sleep centers of the brain as well as for any malformations that may be contributing to apnea.  You just have to wait and see what they say.  Then the real waiting game begins....prepare for some long waits while they are making sure that the treatment your son gets is appropriate.  You don't want them to rush they need to get this one right.  We learned Chris had apnea in October...surgery in Nov....cpap in Feb...still waiting for a proper titration to get the pressure correct.....

 If your son has not been to an ENT yet, he will probably go to one to have his adenoids and tonsils evaluated....the typical thing to do is to remove them and see if that helps things (Chris had her adenoids out and her apnea improved dramatically--from an AHI of 28 to an AHI of 8).  If they remove the tonsils/adenoids then you have to wait again for a number of weeks (probably 8-12) to get another sleep study to see if the surgery worked.  If they do surgery, make sure they do the study to ensure the problem is fixed.....don't let the Drs tell you the apnea is gone without proof.  After the second study you get to go in to the Dr again to see about the results and if the problem is not fixed then you will probably be moved on to cpap for obstructive apneas/hypopneas.  

If your son still ends up with a cpap, you can help him adjust to the cpap by having a positive attitude.  You have done and are doing all you can do to help him grow up healthy and happy.  Cpap on a child is not a walk in the park, but it is not the end of the world either, the parents attitude matters for how well the treatment will go.  Chris has had her cpap since Feb 12 and has only missed 1 night (sick) and has no trouble with it at all....she won't even try to sleep without it.  You can see her adventure on the Diary of a mini-hosehead thread.  If there is anything else I can tell you or anyway I can help, please let me know I'm happy to help.

Susanne and my Mini-hosehead Christina

We went for his MRI on Monday and he did really good.  They had no problem putting him under and he woke up with no problem.  Now we have to wait for Friday to get the results.

We have been pushing for this sleep study for almost 2 yrs.  One Dr said that it is hard to test a 1 1/2 year old for the study, so we said fine and continued to wait.  Then they sent him for allergy test thinking that it was just allergies (NOT).  I think that the Dr. just didn't know what to do with us.  So they finally agreed to the sleep study, I  want to tell  the Dr.'s that we knew that there was something wrong with our son.

 I was being to think everytime we went in there that they thought we were looking for attention for our son.  I feel bad that our son has this problem and that he is too young to understand everything that will be happening in the future for him.

We got our son's results today all there was no pressure on the brain stem     So  our next step is to have his tonsil/ads removed, should know in a couple of days when that is going to happen.

The Dr also said that he had a lot of fluid building up in the inner ear.  He wants a hearing test before the surgery is it common? He says that it is due to the ads, seeing how he doesn't have any ear infections (only has had 1)?  

Dr says once he is healed he will go have another sleep study.  We are hoping that when the redue the study that he doesn't have anymore central apneas.  Does anyone know what they do if they still continue to have central apneas even after the surgery?

Central apnea is when the brain forgets to tell you to breath.  They can't be fixed by surgery.

Obstructive apnea is when something gets in the way of the air preventing you from breathing, this can be fixed by surgery (surgery does not always fix the apnea, sometimes it just makes it easier to deal with)

What did your son's sleep study show?  Has he ever been checked for reflux?  Reflux can contribute to apnea?  

Susanne
(waiting to see if Chris still has apnea -- since she had surgery she has been diagnosed with asthma and reflux and food allergies, all of which played a part in her apnea)

I am still not sure on how these numbers work, but his apnea index was 4.6(nl<1) while the apnea/hypopnea was 7.4(nl<1).  Total central apneas was 32 and 20 obstruction.  Maybe you can translate that into english.

We knew that he was stopping breathing but we never figured it to be that many.  What is hard too is that we have been after the Drs since our son was alittle over 1 yr that there was a problem.  We took him to two different pediatric cardiologist one in FL and one in Rhode Island, (she is great) she told us right away that he problem was obstruction.  So the first thing we did when we got back to FL we called an ENT and 1 1/2yr later this is were we are at.  

So, with some prayers and luck the surgery will help him.

Hi there,

First the disclaimer, I am not a professional I am a mom so this information is just my understanding of how they get the numbers and what they mean.  I hope I can translate into normal English......

Apnea index of 4.6 means that an average of 4.6 times an hour while asleep, your son stops breathing --this can be some of the 32 central apneas (the brain forgets to tell you to breath) and or some of the 20 obstructive apneas (his brain is sending the signal but something is getting in the way of the airflow).  Some hours he will have very few breathing events and other hours he will have more so they do an average of the number of apneas.

Now I bet you are wondering why there is an AHI.  The AHI measures the total number of breathing events each hour.  The AHI (Apnea and Hypopnea Index) measures not only the Apneas but also the hypopneas.  The hypopneas are when they take a slow shallow breath -- bottom line it is not an effective breath (One of Christina's hypopneas was 39 seconds long --it took her 39 seconds to finish 1 breath).    So an AHI of 7.4 means your son is not breathing correctly an average of 7.4 times each hour he is asleep.

Most of Chris's apnea/hypopneas are between 2 and 6 am, so I was unaware of how bad she really was.  I saw the graph of events prior to her surgery and it showed that she really was not breathing between 2 and 4am --the graph showed an almost solid line of event after event after event.  The good news is that now we know about it and are treating it, just like your son.  Unfortunately the medical community does not expect to find apnea in otherwise healthy children (they do in Down Syndrome, kids with neurological issues like CP, overweight kids, and kids with craniofacial abnormalities)  If kids don't fit the picture they don't want to look.  But this is still a new area of medicine and it is getting better all the time, our kids are just ahead of the times.

You are doing a good job advocating for your son.  He is lucky to have a mom who is not giving up.  You know him best and truly have his best intrests at heart.

Susanne and my mini-hosehead Christina (7yo)

Thank you Tatamom for the help, and it is so true our son didn't fit the profile for apnea, but one ENT figured he had something going on due to his weight, he is underweight.  But we will push on and hopefully after his surgery things will level out.  

How long was your daughter down for after the surgery?  Our son is enrolled in a PPK class and we not sure how many weeks that he will be out for.  We are hoping just 2wks, and then get him back to school ( he will miss going).  And at the same time we don't want to rush him off either.

I Will keep you updated on his progress, he will start with his  appoints soon 7/25 ( he has to see his ENT/his DR/blood work/then hearing test) then surgery on 8/20.

Thanks again, and good luck with your daughter

Lisa