Hi There,

My daughter has just been diagnosed with OSA, she is 3.5years old. She has always been a snorer and has had a lot of chest infections and episodes of respitory infections which she needed to be given oxygen for few nights in hospital. The last time we were in the hospital was at Christmas and her oxygen levels were going down to 81% at the lowest but during sleep they were between mostly sitting betwen 84-93% sometimes even with the oxygen mask at her face. The nurses were very reluctant to give her oxygen and always tried re-posistioning her to bring them back up untill they went too low. When we left the pediatrician told me that he was refering her to ENT to have her adneiods removed asap as her oxygen levels were not improving. When we were sent home they were sitting around 88/89% but dipping to 84%. He never mentioned sleep apnea to us at that time. We have just been to the ENT and  talked through a typical night time, pauses in breathing lots of times a night, waking herself up between 4 and 6 times a night, going pale around her mouth,snoring, and ocasionally throwing herself about the bed. She then told us that my daughter has OSA and that she thought she was quite bad with it and although she needs her tonsils,adeniods and grommits put in her ears as her hearing is very poor also, they would not do it without a sleep study being done. Is this very normal practice to do this sleep study? The consultant did say that it would not be safe to go into a operation without knowing what they are dealing with so i understand how important this is! The waiting list for the operation is 18 weeks but the sleep study list is longer so we are on the list for the operation and they are hoping that will push the sleep study forward. The other questions i have is what else can be done during the night to help with the episodes where she is pale and the breathing pauses..i have been told that just re-posistioning her is the only thing but i feel so helpless and frightened when it happens...sometimes i have to nudge her to make her gasp and then she wakes up crying..as i said this happens a lot of times a night so we are all very tired! Any advice would be grateful as i have never really hear of sleep apnea and never expected my daughter to have it!! Thanks for reading my post.
Lyn295

((((((((hugs))))))))

I hope others will reply to your post soon as well, but I wanted to send you some hugs, because I know this is a difficult time for you right now. It is very hard to have your little one diagnosed with something like OSA and need surgery when she is so young.

I don't have any experience about surgery (we were told we could try CPAP (machine that blows air, keeping the airway open) first and then surgery could be a second option. However, my son's adenoids and tonsils were not considered to be very large. My son is 11 yr old.

The sleep study is important, because they need to document how often she slows her breathing or stops, and are there any other things going on. It is a very thorough test, but for one so young, it could be stressful. I have included a webpage that outlines the test examination and what to expect.

http://www.sleepapnea.org/resources/pubs/child.html

I do hope that your waiting time can be cut down. I always ask now at any dr's office, can I be placed on the waiting list for cancellations (if they have one). It can be short notice sometimes, but I have been called in earlier. Four and a half months is a bit long to wait. The strain to make sure she is breathing all night is not going to allow you to get your sleep. And you need sleep too! I can relate to being nervous about it though. I would sneak into my son's room before we got our CPAP and make sure I heard something. Even with the machine, I am watchful.

I can be happy about one thing for you. You are getting early detection. Maybe because my son's OSA was not as severe, he was 11 before he was diagnosed. It has turned our life upside down nonetheless. Early detection is key here, so that your daugher's life can not be as disrupted as ours.

Hope this helps some and keep us posted.

Judi

lyn295 wrote:

Hi There,

My daughter has just been diagnosed with OSA, she is 3.5years old. She has always been a snorer and has had a lot of chest infections and episodes of respitory infections which she needed to be given oxygen for few nights in hospital. The last time we were in the hospital was at Christmas and her oxygen levels were going down to 81% at the lowest but during sleep they were between mostly sitting betwen 84-93% sometimes even with the oxygen mask at her face. The nurses were very reluctant to give her oxygen and always tried re-posistioning her to bring them back up untill they went too low. When we left the pediatrician told me that he was refering her to ENT to have her adneiods removed asap as her oxygen levels were not improving. When we were sent home they were sitting around 88/89% but dipping to 84%. He never mentioned sleep apnea to us at that time. We have just been to the ENT and  talked through a typical night time, pauses in breathing lots of times a night, waking herself up between 4 and 6 times a night, going pale around her mouth,snoring, and ocasionally throwing herself about the bed. She then told us that my daughter has OSA and that she thought she was quite bad with it and although she needs her tonsils,adeniods and grommits put in her ears as her hearing is very poor also, they would not do it without a sleep study being done. Is this very normal practice to do this sleep study? The consultant did say that it would not be safe to go into a operation without knowing what they are dealing with so i understand how important this is! The waiting list for the operation is 18 weeks but the sleep study list is longer so we are on the list for the operation and they are hoping that will push the sleep study forward. The other questions i have is what else can be done during the night to help with the episodes where she is pale and the breathing pauses..i have been told that just re-posistioning her is the only thing but i feel so helpless and frightened when it happens...sometimes i have to nudge her to make her gasp and then she wakes up crying..as i said this happens a lot of times a night so we are all very tired! Any advice would be grateful as i have never really hear of sleep apnea and never expected my daughter to have it!! Thanks for reading my post.
Lyn295

I'll catch flack for this one, but I have one HUGE suggestion for the waiting period...
Let her sleep with you. This works best if you can "spoon" with her and have your husband(?) facing her as much during the night as possible. This will help her body to remember to breathe and sleeping on her side will lessen the episodes of apnea, because it is harder for the tonsils and adenoids to fall back into the throat if she is on her stomach or side.

My son does NOT have OSA, but does have Central Sleep Apnea. This means that his brain either forgets to tell him to breathe or actually tells him not to breathe. No one is really sure which, although we all have our best guess...He has had 3 sleep studies (he's 22 months old) and does very well. We always "practice" the two days before during nap time. I get fun, reasonably large stickers and long pieces of yarn (or other soft string). I also buy a set of "knee highs"...I'll explain in a minute...First put the stickers (with one end of the yarn stuck underneath) on her chest (6), legs (2), neck (2), and cheeks (2). You then take one "Knee high" and stretch it to fit over her head. Have her take a couple of naps this way just before your study. This helps my son tremendously. He never cries or tries to pull his stickers off. We also explain to him that they are listening to the "radio" when all the stickers are on...At our sleep lab, they let us bring the fun stickers from home and put them on over the lead they will attach.  We have also never waited more than 3 weeks for a sleep study to be done (and they only do 2/night at Children's in Detroit)..

A couple of questions for you:
1. Where do you live and what hospital are you doing this through (or is it being done in a doc's office?)
2. Do you have a date set for the surgery?
3. Will they let her at least have an oxygen tank at home for when she has episodes that she gets pale?

We will certainly be praying for you and your sweet angel...

Tiffany

Hi, Tiffany,

Why would you catch flack on this? I thought your response was wonderful, esp. how you prepare your young son for the test. Very creative!  

I am aware that there are many who do not believe in a child sharing the bed with the parent(s). But this is a situation where this child is not breathing. There is a history of the child's oxygen levels dropping. I cannot imagine any sane person requiring their child be sent to another bedroom in this kind of situation. I might see how someone could say, let the child sleep in a cot nearby, but your idea of spooning would cut out the constant repositioning this mother would have to do all night.

If you catch flack, I am right along with you. Thanks for your particular insights.

Judi

TiffanyAcuff wrote:

I'll catch flack for this one, but I have one HUGE suggestion for the waiting period...
Let her sleep with you. This works best if you can "spoon" with her and have your husband(?) facing her as much during the night as possible. This will help her body to remember to breathe and sleeping on her side will lessen the episodes of apnea, because it is harder for the tonsils and adenoids to fall back into the throat if she is on her stomach or side.

My son does NOT have OSA, but does have Central Sleep Apnea. This means that his brain either forgets to tell him to breathe or actually tells him not to breathe. No one is really sure which, although we all have our best guess...He has had 3 sleep studies (he's 22 months old) and does very well. We always "practice" the two days before during nap time. I get fun, reasonably large stickers and long pieces of yarn (or other soft string). I also buy a set of "knee highs"...I'll explain in a minute...First put the stickers (with one end of the yarn stuck underneath) on her chest (6), legs (2), neck (2), and cheeks (2). You then take one "Knee high" and stretch it to fit over her head. Have her take a couple of naps this way just before your study. This helps my son tremendously. He never cries or tries to pull his stickers off. We also explain to him that they are listening to the "radio" when all the stickers are on...At our sleep lab, they let us bring the fun stickers from home and put them on over the lead they will attach.  We have also never waited more than 3 weeks for a sleep study to be done (and they only do 2/night at Children's in Detroit)..

A couple of questions for you:
1. Where do you live and what hospital are you doing this through (or is it being done in a doc's office?)
2. Do you have a date set for the surgery?
3. Will they let her at least have an oxygen tank at home for when she has episodes that she gets pale?

We will certainly be praying for you and your sweet angel...

Tiffany

Hi There
Thank you both very much for replying back to me. It means a great deal to me hearing from people how are going through the same feelings and fears as myself. It must be hard for you both.
We live in Scotland (UK) and i relise this is a American site but i cant find one in the UK. We are getting treated at the Royal hospital for Sick Kids.

We were not given a date for surgery because they need the sleep study done first. I have asked to be put on the cancellation list as i think the waiting lime is to long but the doctors worry is that if a date comes up to quickly i will have to refuse it because the sleep study list is much longer. I thought that they would have done it really quickly considering how bad my daughter is. I had recored her episodes to show the doctor and she did say that it was a typical example of moerate/severe OSA. My worry is about the lack of oxygen and what it is doing to her.

Thanks for the suggestion of sleeping on her side....i have noticed that she is better on her side and she has been in with me and my partner most nights as i can t sleep from worrying about her!! I bet you have both been there!! What a great idea to get the children used to things being attached to hem at the sleep lab. My docotr did say to me that kids are more likely to get a inaccurate result back from the sleep study because it is stressful for htem and they dont fall into a normal sleep, but your idea will take some of that fear form them..well done you!!

The doctor didnt mention oxygen when we spoke to her but when we were in the hospital at Christmas they were talking abou it but left he decision up to the consultant..who never mentioned it at all...i should have asked about it. I might go back and ask my gp to see what he thinks.

Thanks very much for your advice and support.
Lyn295 x

I would ask about the oxygen the first chance you get. Unfortunately, as parents of children who have medical needs, we can not wait for others to bring things up. It is hard though to remember everything. Go easy on yourself.

Maybe in the past I would not have been so insistent about something like that, but low oxygen levels are not to be played with, esp. in a developing child.

Let us know what they say.

Take care,

Judi

A general medical tip for us parents of delicate kids:

Keep a spiral bound notebook (you choose the size, I use one about 5" x 8"). Anytime you think of something to ask, write it down immediately. Only one question per page so that you can write the answer down, read it back to the doc (or nurse practitioner), and confirm that you understand what they are saying. If something is decided that I don't necessarily agree with, I make the doctor sign it so that they are confirming this is their recommendation and not my choice of action.

Anytime you reach 5 questions in your book, call the doc and ask them (unless they are potentially life threatening, in which case call ASAP). You are their customer and any doc worth their weight in medical supplies will take all the time in the world to explain anything you want to know about your child and their condition.

Tiffany

Lyn-
Judi and Tiffany have given you some good advice and feedback.
The only other tip I can think of is that if your daughter's sleep problems are worse on her back you might try using a full body pillow or pillows to try to encourage her sleeping on her side. Not everyone with sleep apnea does worse when on their back and if your daughter's sleep is not worse on her back, then don't try it.

Is your daughter fully over her latest respiratory infection? Does she appear to have good lung functioning between her URIs and chest infections? Does she have any ongoing lung problems?

Do keep us posted and best wishes to you and your daughter.
Bill

Hi There,

I find that she is slightly better on her side but still needs re-positioning during the night, somtimes when she is on her side and the breathing pauses i turn her over or move her up the pillows a bit. There are also times when she goes pale round her mouth that i have to wake her up totlly myslef...most times she wakes herself up, then the colour slowly returns to her face.

Since her last infection she has had 3 more lots of antibiotics, one just finished last week and she seemed a bit clearer but yesterday she has developed the "croup" cough back and her nose has been blocked up since she was in hospital but is a bit worse again today.  I am going to get her seen tomorrow if we have the same carry on tonight with the pale circle round her mouth, the more posts i have read on the site the more i am sure this is something to get seen to! I have a friend who is a ward sister in the Sick Kids hospital and she thinks the same.
Thanks for your help, its much apreaciated. I will let you know the outcome if i get her checked over.

Lyn

First, I'm so sorry you and your darling are having so much trouble.  I've never had children but I can't imagine waiting and watching knowing my child wasn't breathing properly.  Hopefully, you can get in earlier for the sleep study and the surgery (if done) is a HUGE success.

Second, I just LOVE the idea of the practice with the yarn and stickers.  What a wonderful idea!  I'd make sure the folks at the sleep clinic know what you did so they could pass on the information to other concerned parents.

Our pulmonologist thought it was brilliant. I have worked with kids for a lot of years and firmly believe that they will behave how they are expected to. If you expect your child to throw fits and cry and be uncomfortable, they will be. But...If you prepare them for the experience and let them know that they are expected to sleep as best they can (take whatever they would sleep with at home, even favorite pillows are okay), then they will do just that!

The nurse practitioner that we work with asked if she could use that for other patients. I told her absolutely!!  Isaac also recently had an EKG (electrocardiogram) done. When the nurse laid him down on the table and started putting stickers on, he sang to her "stickers, stickers, I love stickers". When she went to put the first lead on, he looked her square in the face and said "listen radio"! He was only 20 months old. It can be done. We didn't restrain him for any of his tests. He just does what is expected of him, especially if he knows what is going to happen...

You can do it. It doesn't have to be traumatizing. Our kids should view doctors through the eyes of joy and trust. They shouldn't ever be afraid of them. I hope Isaac never is...

Tiffany

PS...if anyone else has a quirky test or procedure coming up that you would like some creative problem solving to know how to prepare your kids, just ask!

Tifanny,

I hope you dont mind you asking but i was sure you wouldnt mind...just need some advice on a problem that i have come ascross and has made my daughter frightnened in the past.

We have been in hospital three times for her Upper respitory Infections and each time they have put IV lines in her.....and each time it has been a total waste of time as they were not in a vien or they started to swell and had to come out. They did, each time, put the cream on the numb her hand but each time they had to go else where as they couldnt find a vien. By the time they go it in she was screaming the place down and it was so hard for me to try and calm her down and i was upset at what they had put her through.
The second time i said that i didnt want a IV line in unless it was neccesary but again they said she needed her anti biotics iv and we went through the same again.
Third time i told them that i was concrerned about the IV line being put in and the doctor was very good with her and he got it in first time but then it started to swell so had to come out....now every time we go near a hospital she crys because she thinks she is going to get hurt...i have tried my best to get her ready for it etc but the damage is done....any ideas!! I am worried about going in for her operation but i have been told that they will not put a line in untill she is sleeping and will be put to sleep with the gas but not sure if this is right! The good thing is that when she has been in before it was our local hospital's childrens ward but for her operation she will go the Childrens Hosital and i am sure they will be more adpted for kids...i hope!

I have decided to take her to our gp on Monday to aske a few questions i have about her apnea...the first one will be about the oxygen!

Thanks for your help and support again!
Lyn x

My middle son had 7 sets of ear tubes by the time he was 25 months old.  He got to where he cried if we got near a hospital too.  They ended up not even sticking him for the IV until he was under and it was WONDERFUL for him.  The nice thing is when they do it that way it is always an anesthesiologist in the room rather than the assistant.  For us it was nice that we could at least take that trauma away from him.   I think what was hardest for us was keeping up beat and never letting him "feel" our fears and concerns.    Instead we would pick a stuffed animal that needed surgery and ask him to escort the animal to surgery.  The nurses and doctors loved it and they were very attentive to the 'animals' needs.  They would put masks on, electrodes the whole ordeal was done to the stuffed animal first then Jon didn't get so worried.


_________________
~ElleMarie~

"Sometimes it's just a minute at a time."

AHI 100
Diagnosis June 2007
Pressure
June--9
Dec--14
Jan--11

The IV is a BIG issue. Isaac HATES needles now that he has seen so many. Here's how we handle it...

I always bring him a sugar water sippy cup, even when going under anesthesia, they will sometimes let them have this...
I always tell him we are going to get poked. It will hurt, and just hug him/her and love on them..

As far as IVs go, I highly recommend asking them to put it in their leg (calf muscle works great) or even on the back of their arm because it is easily protected from pulling out. They also have HUGE veins in these places that make them easy sticks!  Isaac hasn't had too many IVs, but has had plenty of blood draws (we go for another one next week). If they are going to put it in the leg, bring a blanket big enough to swaddle your child, even if they're 6 or 7 years old, it still works. Swaddle per the instructions in "Happiest Baby on the Block", obviously omitting the legs. I have actually gotten to where I can just omit one leg in the swaddle and it helps keep the other one from kicking in retaliation.

I have recommended this to some friends of ours, who didn't even swaddle their kids when they were babies, but started doing it for blood draws and IVs when they were in their elementary years. It does work. It sounds crazy, but it does. Always make sure that as soon as you leave the hospital, your child gets to do something SUPER fun! We always schedule a playdate with a friend from church at a place I don't normally take him to at all. Let them know it is going to happen before you go to the hospital (Bring a picture of them doing that fun activity with you if possible) so that they have something to look forward to. By bringing a picture, they can look at and talk about it and it makes it more "real" to them that this is where we are going next!!!

The last time I took Isaac for a blood draw, I took adult orajel with me and smeared it all over his arm about 5 minutes before we went back. It worked pretty well. He did feel it, but he cried a lot less. Bring plenty of baby wipes. It gets sticky...

Hi Tiffany thanks for your reply...i will try the swaddling, great idea about the legs too! Thanks very much!

Now can i ask a few more questioons..I went to my gp a few days ago to ask about my daughters oxygen levels and if she thought that we need oxygen at home. I told her about her going white round her mouth etc. She decided the best thing to do is to get her monitored over night at hte hospital.

They checked her levels when she was awake and it was 98%. When she was sleeping it was going down to 84 an d85% all the time. She had 7 episodes where she totally obsructed and stopped taking in any oxygen. The alarm went off all night long! The nurse was very concerned about her and said to me that she thought her surgery should be done as a emergancy. She went a got a doctor to see her during the night as her breathing was very laboured...and this goes on all night. What the worry was also is that when the oxygen levels went down to the 80's the nurse was reposistioning her over and over agin..and was watching the levels rise on the monitor so obviously she could see what was going on...when i am at home i cant tell what posistion is best and what her levels are at! I have always been told to raise her head etc but this postition made it worse and when she was on her side it was going into the 70's. I felt terrible because i thought she was a bit better on her side. We were told that we could come home and they would be in contact to see if they  could speed up her operation...i thought they would have gave me a date or something with her oxygen levels being so low all night long or at least gave me some help untill the date of surgery. They confirmed that her tonsils are massive and there is not much room for air to get through and her adeniods are massive too. I just am really worried about my daughter!

no[u]My question are..i know its not normal at all for this to happen at night but i am over-reacting? Should i be taking her back to hospital and insisting that they help her during the night or give me oxygen at home?? or should i just accept that this is ok and it will get better once her surgery is done. I just felt that my husband and myslef are the only ones really concerned about it alll and we dont know what to do...our instinct is to keep taking her back when we feel she is struggling...which is every night , as i have explained to the doctors, but i dont want to be a over proctective paraniod mother!! I need someone that doesnt know me to tell me what they think..please. I just dont want anything to happen to my baby girl and i worry about the implications of the lack of oxygen.

PLease be honest with me and tell me what you would do in my situation...i am tired and worried about my child as every parent would be but i dont want to be causing a uproar at the hospital if these oxygen levels are reasonable fore having this obstructive sleep apnea
Thanks you in Advance!
Lyn x x x