I sort of stumbled onto this site and forum while trying to research SPo2 desat in toddlers. I'm so happy I could cry. Finally! A place to be heard rather than talking to the brick wall which the pediatric pulmonologist turns into anytime I question his conclusions. So here's my story...and please excuse me if I sound snarky -- we just finished a second sleep study this am...

I have a 2yr old son, Ethan, who has had breathing issues-- snoring, noisy/wet sounding breathing-- since he was two days old. His first pediatrician diagnosed him as having "a little cold" for the first nine months of his life. Pardon? His next doc, a family practicioner, sent us to a pediatric pulmonologist who diagnosed him with laryngolmalaysia (spelling?). After a swallow test showed no problems in his larynx or bronchial passage, the doc said he would either grow out of it, or it would become markedly worse by  his first birthday. Neither one happened. I had questioned his third (current and wonderful) pediatrician about tonsils/adenoids. She immediately made a referral and appointment for us to see a peds ENT. At the follow up with the pulmonologist, he ordered a sleep study. I tried to talk to him about the ENT path, but he was really set on the sleep study. The results, which the sleep clinic and the pulmonologist have yet to deliver to me in hard copy, showed mild to moderate apnea and significant SPo2 desat. So Ethan was put on O2 at home. What a disaster that was. He was also referred to a different ENT for T&A-ectomy. Hmm...

After the surgery, we were told that the poor kid had been trying to breathe through a ridiculously small airway. The surgeon's exact words were, "His tonsils were huge and his adenoids were enormous." Mother's intuition anyone? He ended up in the PICU for about 36 hours due to unstable respiration rate and O2 sat, but another day and 1/2 later we were on our way home with orders to discontinue the oxygen.

 After the surgery, he is a new kid. He was never really lethargic or excessively or inappropriately sleepy, but he has three times the sparkle and energy he used to . He has always been on track as far as physical and cognitive development, but he speaks more, and more clearly that any two year old I've ever met -- including his sister who, until she started preschool, had never been sick a day in her life. Not even a cold for that one!

So last night we had a follow up study after the surgery. It was a mess. His usual sleep time is no later that 8:30, usually 7:30. But the nurses wouldn't let me leave the room or turn off the movie they had put in until 9:45. At about 2am, the nurse informed me that they had started him on oxygen, which they continued until 5:45am, when they woke him. The nurse informed me that he would need to go back on the O2 at home due to his drop in sats -- he had 15 seconds at 89%, and they didn't take off the O2 at all after that, but there were no significant apnea events. Well, I told her that we wouldn't be going back to the O2 at home for a wide variety of reasons, and that yes, I was fully aware of the possible implications. Needless to say, the pulmonologist was irritated with me and tried to tell me that I was killing my child by not following his prescription. My position is this: I want to know what the underlying problem is. Heart, lungs, neurological, whatever it may be. So at this point I'm doing as much research as possible and trying to find a really great children's hospital for a second opinion. My suspicion is that the oximeter the clinic has detects movement as a drop in sats. This was the case in the hospital after he was out of the PICU. Everytime he moved, his sats would nose dive. But they always came back up.

I'm sorry that this is such a ridiculously long post. To get to the point, does anyone have any advice about the situation? My whole heart and mind are telling me to look for answers beyond the O2 bandaid that the pulmonologist is pushing. Huge thanks to anyone who takes the time to plow though my (not so) little diatribe.

I hear your frustration loud and clear. I can definitely agree with your search for answers. Right now I basically have questions. How long had it been since the recovery from tonsil and adenoidectomy? I know the doctor said there was no significant sleep apnea, but it does beg the question. To be more of help it would be better to know what was in the report. Could you get a full copy of the report from the doc? Perhaps it is exactly as he said and there is no apnea, but doesn't hurt to let some of us have a gander at the numbers and give our two cents worth.

Doesn't seem that there is much to go on and I can understand completely with your anger over them just putting on an O2 bandaid. Has to be a darn good reason for a child's O2 sats to drop like that. You wouldn't be the first or even umptyumphundreth person to have to go through more than one doc to finally get some right answers. Good to hear the surgery did so well in terms of all that excess energy kids have. At least you have that.

On the actual PSG graphs which include such things as EEG, ECG, etc. it places all the information in bands in real time, so from that (which the pulmonologist likely never saw, only the reviewing doctor) you could easily see where a limb movement occured and where SAO2 drops occurred. Would be easy to link those together and verify if your theory was correct regarding the sensor.

Guess that's all I have to contribute for now. Anything more from me would just be conjecture. Hopefully you can get the results soon and we can give a bit more to you. Be well!

John


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I understand frustration, but why not use oxygen at the same time you are looking for answers?  If you doubt the pulse-ox. results, have a doctor send you home with one.  They have small portable units that record O2 sat. the entire time they are worn and the results are downloaded immediately after it is brought back.  What if his O2 sats. are real?  Then everything the doctor is telling you is real too.

Pulse-oximeters are usually very reliable and accurate.  The chance that you would get two lemons is very slim or maybe the probe was loose on your son's finger.  Don't let aggravation and frustration keep you from treating your son as you search for answers.  A little kid especially needs that oxygen.

Keep us posted!!

Vicki


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

Thank you both for your input. I'm waiting on a copy of the study, on pins and needles really. As far as the reviewing doc goes, I'm not sure exactly who is looking at the results. After the study ends (at this particular clinic) the nurse who is assigned to the child writes a quick summary report on the results and then calls the doc, in my case, Ethan's pulmonologist, and makes her "reccommendation" according to their guidlines. Over the phone, the doctor will agree or disagree with the assment, and that's the show folks. In the mean time, I have no idea if the actual numbers are going to the pulmonologist, or if they are sitting in the sleep clinic in some file. I should probably mention that we live in South Dakota, Aberdeen, and travel to Sioux Falls for all of this. One of the two hospitals there in Sioux Falls recently received a HUGE endowment from the Sanford family, and have plans to start creating state of the art facilities, but those are not here yet. So the idea of having older pulse oximeters at both the hospital and the sleep clinic, really doesn't seem far fetched to me. And it's been 8 weeks since the surgery, which is apparently the standard period for a follow-up study after surgery.

As far as a portable pulse-ox and o2 unit, small town South Dakota here. After the first study I tried to get a small unit so make sleeping easier for my 4-yr old daughter who has to share a room with Ethan. I was told that I could not "exchange" the monster machine the doc had ordered, especially since Ethan only needs it at night, and therefor a portable machine was unnecessary. Same story with the pulse-ox: since the doc hadn't ordered it, I couldn't get one. Nice huh? And while I'm fully aware of the implications of Ethan having an o2 deficiency while he sleeps, the last go-round with the o2 left the entire household sleep deprived. My daughter couldn't sleep because of the noise, and I was up every 20-45 minutes to put the canula back on. Garet, my daughter, would eventually climb into bed with my husband and me which left my husband still sleeping, but restlessly. Unfortunately, the sleeping situation can't be helped -- it's just not an option for us to buy a bigger house at this stage so that bedrooms can be separate and farther apart. It's not a good situation any way you slice it. But I do have an appointment with Ethan's pediatrician, who is pretty much the only reasonable doc I've met in this town and surrounding areas, and plan to speak to her about doing any and all general testing to find out what's going on, including allergies. My sister has always had severe allergies and asthma due to those allergies. She's had nasal polyp surgery twice, and still has issues from time to time. I had some serious issues with dust and dander when I was in highschool, and my husband has a few allergic areas as well. One of my big suspicions is that he has a mold allergy. We live in a house built in 1900 with a cinderblock foundation. And Aberdeedeen does have a history of flooding from time to time, including this last May.


So how long does it usually take for a patient to receive a copy of the results of a study?

KK,

My situation with my son sounds very similar to yours.  He will be 2 next month and had the T&A done at 14 months due to OSA.  But to back up a little, he has tracheamalacia - very similar to the laryngomalacia - due to a birth defect where his esophagus attached to his trachea instead of his stomach.  That is all corrected now, but we still deal with the lingering effects of the tracheamalacia.  He used to have the wet, gurgly sound after eating or drinking anything so we started adding thickener to everything he drinks and that helps a lot.  Does your son sound wet or gurgly after eating/drinking?  If so, you can buy Thick-It or Thicken-Up over the counter at any pharmacy or they can order it for you.  What it does is thicken the liquids so my son has more control of it going down his esophagus instead of spilling into his vocal chords and lungs which can produce that wet or junky breathing.  

We did a f/u sleep study about 10 weeks after the T&A.  That whole thing was a mess for us also!  It showed 1 ox desat to 88% (I think) and our ENT and ped neurologist weren't concerned about 1 desat.  He showed a couple of centrals (that's why we were sent to the neuro) but the neuro said they were all normal incidents.  It took about 3 weeks to get the results back from the sleep studies for us and we are using Vanderbilt Children's Hospital which is one of the top ranked places.  Just a slow process, I guess.  

We also ended up staying for 3 days after the T&A - not in the PICU but we've been there before for other reasons.  Not a fun place.  Emerson suffered the desats immediately after the surgery and was turning blue so we had to keep oxygen on him as well for a few days.  

Are the doctors wanting Ethan to use oxygen because of 1 desat to 89%?  That just doesn't seem like it warrants all night oxygen to me.  Just my mommy opinion though.  

 Emerson's f/u sleep study also showed some obstructive hypopneas (slower, shallow breathing) but it was decided that it was due to his tracheamalacia which will just need time to improve.  And it's sooooo much better than it was when he was an infant.  It's not so bad to warrant a cpap at this point.  We follow up with the neuro again next month though.  Hopefully, no more sleep studies!!!

It sounds like Ethan is doing well otherwise.  You are the best judge of what's going on with him. Keep pushing to get the answers you need until you are satisfied.  

Take care,
Sara

... sorry about the abrupt end there, little fingers on the keyboard. As I was saying, his daytime behavior hasn't changed a whole lot, but he is much more clingly after his naps, which have decreased by 1/2 ( 1 1/2 hrs to 45 min.), and he seems to have forgotten how to behave himself and listen. I'm not sure how much of this is the treatment, and how much is my son being 2.
     As for the malacia, he had a swallow test and that was negative, and there's never been an issue with gurgling or swallowing or reflux. For quite awhile after the T&A, his breathing was silent. Since the weather has turned hot and we're using the AC and fans, he seems a little more raspy. I'm very suspicious of a dust allergy, maybe mold too. But he's always had clear lungs at his ped's office. It's really just baffling, and no one seems to think that I need any information besides what the doc thinks is the best solution.
     I'm really hoping that all the altered behaviors will dissappear as he gets used to the canula, but I have serious doubts. It's all just so frustrating. Not to mention exhausting with all the sleep alterations. It's like having a newborn all over again.

So apparently the little fingers lost my first post completely. What a day this has been! This is the third time I'm trying to write the first half of that last post.

Long story shortened considerably, Ethan is on the o2 now after the doc's office called to move up the follow up to the sleep study. No info other than wanting to move it up to asap, so of course, I got worried and set up the o2. From the tech's paperwork, I discovered that he dropped to 78%, not just 89%. Just a little difference in those numbers, eh? Needless to say, I'm furious about the whole thing. I've so had my fill of minimal to no information regarding my child. And if I do want a copy of the study's results, I have to call and specially request one. Is that the same everywhere, or is the SD medical situation just that backwards? Again, so angry I can hardly see straight. It's all so incredibly frustrating. It took 18 months for anyone to take me seriously about him having breathing issues, and now no one seem to think it necessary to let me in on what's really going on with him. And I'm exhausted and cranky. What a fun combination for my 4 year old daughter. Poor kid. I'm glad that we have an appointment on July 3rd instead of the original on the 29th of July. I don't know how much longer I can do this to my kid without seeing any positive outcome.

So far, the only changes I can see in my child after starting this "necessary therapy" are negative -- in fact, he's exhibiting some of the behaviors that were on the checklist of apnea symptoms. Crazy right? He fights the canula going on, continually tries to take it out, and putting it on after he's asleep only wakes him up and ticks him off. He's fallen out of bed both nights, twice last night, and that hasn't happened since the second night he was in his toddler bed -- 6 months ago. He's also getting less sleep than he was; taking longer to get to sleep and waking up earlier. Monday night, it was 930 before all was quiet, and he was up at 515 am. This morning was a little better at 630 am, but he was up and fussing/screaming from 3am until 4am. The kid who couldn't go to sleep unless mom and dad were NOT in the room refused to even calm down unless mom was there. It was such a mess. And I'm exhausted and cranky. What a fun combination for my 4 year old daughter. Poor kid. I'm glad that we have an appointment on July 3rd instead of the original on the 29th of July. I don't know how much longer I can do this to my kid without seeing any positive outcome.

The last two waking days his tantrums have increased in intensity, he yawns much, much more, and he is so much harder to console. He's still the same kid, but seems a lot less happy.               And now the first post up there will make much more sense. Sorry guys!

I don't have much advice to give you other than to tell you that you are not alone!!!  Emerson's bed time is usually around 8:00.  But recently, he's staying awake in his crib until about 9:00 and also waking around 5:30 am.  Sometimes he'll take a 2-3 hour nap and sometimes it's only for an hour.  I've tried putting him to bed earlier, later, etc and nothing seems to work.  I know he's cutting his 2 year molars now and they are giving him some trouble.  Lots of saliva and more labored breathing at night because of it.  With the tracheamalacia and a repaired esophagus, he has difficult time clearing saliva and then swallowing it.  Does Ethan get breathing treatments?  Emerson gets 1 dose of Pulmicort through a nebulizer daily to help keep his airways open.  

I know it's all very frustrating.  I can't tell you how many doctors and specialists we've seen for all of Emerson's health issues.  Sometimes it's like we take 1 step forward and then 2 back.  And I know how you feel about being exhausted all the time.  I work full-time so for me going to work is kind of a "break."  

I hope you get some answers on the the 3rd.  Please keep me posted.

Sara