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Hi

Been absent from the boards for a few months life is so busy

Travis has Bilateral Vocal Cord Palsy which is intermitant he is due to get a NG tube on the 18th if that doesnt work we will be trialling CPAP

Jaydon had a psg in Nov that showed no significant obstruction so we are now looking at his lower airway and immune system as well as CF however Im not convinced I think he has OSA caused by his upper airway he has sever harrisons sulci

I videoed him napping today any comments appreciated ......is my gut instinct correct and I need to push them to review this do average 2 year olds breath like this when sleeping ???

http://youtu.be/3XJf87YGUaY

http://youtu.be/NSkUUcuHg_Y

http://youtu.be/yBwZscwQlmw

Carolanne

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That is not normal Carol. We don't see alot of true OSA in younger kids. What we do see is Upper Airway Resistance Syndrome(UARS) or Respiratory Effort Related Arousals (RERAS). A RERA is a breathing event that causes an arousal WITHOUT a desat. Scoring or diagnosing sleep related breathing problems can be difficult. Here in the states we have a completely different set of rule for pediatrics. The difference is that we analyze each breath in peds rather than 10 second blocks of respiratory patterns. I would ask the doc which rules they used. Better yet ask him to explain UARS or RERAs to you. If he/she can't then I would look for additional support.

 

Did they look at his tonsils and adnoids?

Carol, firstly to say 'welcome back' and, secondly, I'm glad Rock has responded first, as I am also concerned that his breathing doesn't appear normal, but am not expert enough to state this (thanks Rock).  I had my daughter watch the videos too (who's a nurse) and she thought the same.  Having said this, both our kids were very noisy breathers, which I assumed was normal until a couple of friends pointed out it wasn't...... our daughter developed asthma and still has trouble with nasal breathing, even after 2 operations, and our son is very much like I was at his age - just cannot wake up in a morning no matter how much sleep he's had.  We've yet to discover if either of them have OSA.

Great advice from Rock and keep us posted please Carol.

I am thnking about going back to school for nursing.

Really?  Good for you Rock :)

RockRpsgt said:

I am thnking about going back to school for nursing.

Not exactly sure yet. I just signed up for some classes at the local community college. Just taking some fun classes to get back in the mindset. I am planning on going part time in sleep after my wife finishes up her surgery and Cnim stuff. After this her schedule will get pretty crazy for a while and we want to make sure that someone is home for the kids. We are also DISCUSSING having another baby. Still in the negotiation part of it all though.


Kath Hope said:

Really?  Good for you Rock :)

RockRpsgt said:

I am thnking about going back to school for nursing.

I shall watch this space, as I can't imagine you going part-time in sleep seeing as you eat, sleep + breathe it :D  Joking apart, good luck with your decisions and plans :)

RockRpsgt said:

Not exactly sure yet. I just signed up for some classes at the local community college. Just taking some fun classes to get back in the mindset. I am planning on going part time in sleep after my wife finishes up her surgery and Cnim stuff. After this her schedule will get pretty crazy for a while and we want to make sure that someone is home for the kids. We are also DISCUSSING having another baby. Still in the negotiation part of it all though.


Kath Hope said:

Really?  Good for you Rock :)

RockRpsgt said:

I am thnking about going back to school for nursing.

The only thing that would change is the amount of sleep studies I run. It would make me more available for volunteer work and education. I have some ideas that are difficult to put into a practical use while working nights.

Sounds sensible + will do you the world of good not to work nights.  More energy too to help us out on the forums ;) with huge thanks :)

RockRpsgt said:

The only thing that would change is the amount of sleep studies I run. It would make me more available for volunteer work and education. I have some ideas that are difficult to put into a practical use while working nights.

Thank you Rock :) I am so thankful you give your time to answer posts on here your knowledge is an asset...I dont think they do analyse breath by breath but that is something I will ask his respiratory consultant as well as explanation of UARS and RERAs . They have said by visually looking his tonsils are ok and not an issue and I have asked about adnoids also as far as I am aware they cant see adnoids unless with a scope they can test airflow with a metal lever under the nostrils but in my 4 year old this test said his were ok but when scoped werent . Good luck if you do decide to go into nursing . thanks for your input once again

Kath thanks for you input and the reason I posted was to see if anyone could see what I see I am not qualified in sleep but a mum like you .......though I am often asked am I a nurse sadly my kids have taught me all I know :) thanks for asking your daughter to look I am glad in a way that others see it as you do sometimes question your thoughts when so called experts say all is ok  Jaydon is asthmatic and on brown and blue inhalers daily through aerochamber....I hope that your children dont have OSA but you are so knowledgable in the subject you will be there best advocate and get them treatment if needed.

No reply from my email to his consultant but he may not be in work or at his desk so will leave it for a week or 2 before calling to see if he received it.

Interestingly our health visitor was out today and Jaydon fell asleep ....she said "oh he has sternal recession" does he always sleep that way .....yes he does was my reply and she couldnt believe it and told me to try changing his position this of course didnt alter the obvious working to his breathing and she told me to keep pushing .

So thank you everyone this has made me determine to continue to fight for my kids health we have a current compliant for Travis being misdiagnosed and I wont be going there again he went 4 years without help .

Kath do you know if the fitlife full face mask is available on the nhs for cpap users ??? I think my hubby would benefit from it and if Travis does need CPAP this year I will be buying one if not available



carol murphy said:

Thank you Rock :) I am so thankful you give your time to answer posts on here your knowledge is an asset...I dont think they do analyse breath by breath but that is something I will ask his respiratory consultant as well as explanation of UARS and RERAs . Oh infact I should have Travis's last study in his hospital notes would it be printed in report form ?  They have said by visually looking his tonsils are ok and not an issue and I have asked about adnoids also as far as I am aware they cant see adnoids unless with a scope they can test airflow with a metal lever under the nostrils but in my 4 year old this test said his were ok but when scoped werent . Good luck if you do decide to go into nursing . thanks for your input once again

Kath thanks for you input and the reason I posted was to see if anyone could see what I see I am not qualified in sleep but a mum like you .......though I am often asked am I a nurse sadly my kids have taught me all I know :) thanks for asking your daughter to look I am glad in a way that others see it as you do sometimes question your thoughts when so called experts say all is ok  Jaydon is asthmatic and on brown and blue inhalers daily through aerochamber....I hope that your children dont have OSA but you are so knowledgable in the subject you will be there best advocate and get them treatment if needed.

No reply from my email to his consultant but he may not be in work or at his desk so will leave it for a week or 2 before calling to see if he received it.

Interestingly our health visitor was out today and Jaydon fell asleep ....she said "oh he has sternal recession" does he always sleep that way .....yes he does was my reply and she couldnt believe it and told me to try changing his position this of course didnt alter the obvious working to his breathing and she told me to keep pushing .

So thank you everyone this has made me determine to continue to fight for my kids health we have a current compliant for Travis being misdiagnosed and I wont be going there again he went 4 years without help .

Kath do you know if the fitlife full face mask is available on the nhs for cpap users ??? I think my hubby would benefit from it and if Travis does need CPAP this year I will be buying one if not available

Pleased you've been given confidence from Rock, your Health Visitor and my own humble opinion to keep pushing.  We really do have to fight for our kids don't we?  An ENT consultant my son saw last year told me that OSA does not run in families - shows how much he knows :(  My son has finally agreed to use on of the Sleep Strips we sell and I'll see if I can convince him to sleep with the pulse ox on too, so watch this space when I eventually pin him down......

Re the FitLife - some NHS clinics stock it and others don't.  For me though it's been worth it's weight in gold and has sorted out all the other issues I used to have (sores on the bridge of my nose and strap marks etc).  Rachel's little boy, Emil, uses it too as the small size is good for children.

Look forward to hearing your progress with both your boys.  Good Luck!

got a daytimenap video I notice 4 mins into video his neck sinks in at same time as chest any ideas why ?

http://youtu.be/O-KYs4Z8_mA

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