Sorry I've taken so long to check back in with you guys!  I had major surgery myself and am just now able to start getting back into the groove of things.  To refresh your memory, my son, Jameson, is 2 and had a sleep study done and was diagnosed with OSA.  We saw the ENT and he did a T & A on 4/9.  The recovery was TERRIBLE!  But, since he has fully recovered, he is starting to have the same symptoms again... severe night sweats, snoring, waking up constantly.  I have a call in to the ENT to get him seen for his post-op sooner (for some reason they don't see them until 3 months after the surgery).  I just wonder, at his age, what can they possibly do next?  I saw one of the mesages on here about GERD.  Jameson DOES have reflux and is on medication for it... never thought about it being related.  The medicine seems to help his stomach, but it sure does not help his sleeping issues.  I'm kinda at my wits end with him not sleeping at night.  My husband works nights, so I've just taken to putting him in with me, because if he starts waking up, I can sometimes rub his back and get him back to sleep.  If he ever fully wakes up.. it is a while before he goes back to sleep.  I know they have the CPAP machine, but can they possibly put a CPAP on a 2 year old?  If not, do we have any other options?  I'm afraid they are going to tell me no, there is nothing else they can do for him... which means never getting normal sleep for me or him!

Hi there!

My son is 5 and has been having apnea episodes since he was born. At 2 we did the T&A. At the time he still woke constantly (hourly+) and our ped told us that it takes 6 months to get their bodies into a routine, so he would do nothing for that time except prescribe benedryl.  We talked to another dr who told us the same thing- that it takes 6mo at least.  

Unfortunately he is now 5 and we go for his sleep study on June 8th to see if it's behavioral or apnea. We have tried benedryl & melatonin. He doesnt wake for long periods, just enough to drive my husband and I nuts as he is like apinwheel in our bed.

The sleep specialist DID say that its possible for the adenoids to not be totally removed or to grow back a little and for that to cause problems too...just another though.. they'll check his after the SS.  And yes, if it shows apnea, it's a CPAP for him. Not sure at 2. He said at 5 they usually take about 6 wks to get used to it.

I hope you get some answers. I hope we do too. ((hug))

Hi Ashw32,

I am sure you will be getting responses from the great moms of pediatric patients that we have here (hummm, I wonder why it is all moms and no dads?).  Anyway, I bet a CPAP is quite usable on a 2 year old.  It is all in attitude and how you present it to him.

Please, please, please do not let the doc. do anything like a UPPP.  The recovery is much longer and much more horrific than a T&A and there is potential for very severe, irreversible side effects.  The saddest case posted was a 6 yo who had a UPPP, horrific recovery and was left with apnea which could not be compensated with a CPAP (a UPPP can do that).  In my opinion, that doctor should lose their license.

Vicki


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

Wow, so sorry to hear what is going on.I am suprised that they wait three months for a post op check! Yikes. He may still have swelling from the surgery so don't panic yet. CPAP on a two year old...initially that sounds like a day at the beach but....My daughter is eight but also has Down syndrome. She is cognitively about 6 years old. She also has a lot of fears. When they told me she needed CPAP I felt exactly the same way you do, NO WAY. That being said I decided to give it a try.I think so much of it is about the approach and your reaction to the whole thing. I would try really hard to find a sleep DR that has dealt with pediatrics. Our Dr was all about conditioning Hannah to accept the mask. I think it has to be a gradual process to get used to the whole idea. Hannah is on day four of CPAP now. It is not easy but every day I can see her getting more used to the whole thing. I think the gradual approach is easiest.I know the thought of it all seems impossible but I would try to have an open mind and at least give it a try if that is what they suggest.


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Heather-Mom to Hannah(8-hose head) and Logan(4), wife to Paul (also a hose head)

hi Vicki,

Whats a UPPP?

It is where they hack away a big portion of the soft palate.  It can leave one with permenently altered taste, a feeling of something in the back of the throat, difficulty swallowing and regugitation of food and liquid through the nose.  It has an exremely low success rate in sleep apnea and can leave one with worse apnea.  It can also make it so that a CPAP is not usable.

Search for it in the upper right search field and you will find lots about it.

Vicki


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

I am so frustrated!  Saw the ENT today and he almost acted like, DUH, I have no idea what you should do!  He appeared offended that the T & A didn't work.  He has referred us to a sleep specialist since he has no idea what to do.  He does not recommend another sleep study until 6 months after a T & A.  Well, I can not go 6 months without sleeping and neither can my child!!!  I get so frustrated with doctors!!

Hi there,

I am so sorry to hear that Jameson is still having problems.  When my oldest was little she did not sleep for 18months....that was a very hard time, so I understand what you are going through.  

Have they considered any other reason for Jameson waking up?  Is his reflux completely under control?  Does he wake up crying or just wake up? Is he better some days than others?  If there is a difference between days could you keep a journal of everything he does/eats to see if there is a common pattern?  

I am wondering if he might have a food allergy or something else going on......my dd would wake up screaming everynight because of a milk allergy (not Chris).

Drs can be very frustrating, but hang in there if you don't fight for Jameson's best intrests no one else will.  You are doing a great job.....he is lucky to have you for a mom.

Susanne

Well, we saw the sleep specialist today.  We are scheduled for another sleep study next Wednesday.  The Sleep Doc thinks he may have Restless Leg on top of Apnea, so he prescribed a med for RLS that unfortunately my insurance wont cover and it is VERY expensive... way too much for me to spend to just "try".  He said he was out of samples... and I am like, listen, I am not made of money.  I don't have that much money to just throw away if it does not work!  So, needless to say, we did NOT get it filled.  I'm just going to wait for the study report to see if he even HAS RLS.  I myself have RLS and take Klonopin for it... $4.00 a month.  He said he can prescribe Klonopin to a child... but acted as if he was trying to push this newer more expensive med.  That kills me about doctors.  They act like everyone is just made of money.  Do they work for us or the pharmaceutical companies???  I'm just ready to get the study over and to know what is going on and what to do!  LOL.. they don't need to mess around with a mama with no sleep!!!

Chris was given Klonopin for her RLS/PLMD.  The first night she took it she was sleeping with me and I noticed that the med worked.....too well her breathing was very slowly and shallow.  I later learned that Klonopin can suppress the respiratory system and is not reccomended for people with OSA (or at least that is my understanding.....it turned Chris into a wild child so she won't ever take it again).  Chris is currently on Neurontin (Gabapentene) and I think that is working, but will know for sure when she has
 her next study.

Susanne

Well, we got a good study last night. I was so glad that he did all the abnormal things that he usually does... like tossing and turning, sweating, snoring...etc.  I even saw him stop breathing at least 3 times while I was watching him.  I was afraid he would sleep perfect and they'd think I was nuts or something.  They said we should know something in a week.  I will be glad to know!!!  Will keep you guys posted!