Re: Obstructive Sleep Apnea

[Guest guest]

Oh, and what I forgot to say about my neighbour is that she actually took her kid to the same GP that I use for those 30 lost minutes of sleep... I just wanted to send her an anonymous note and tell her:  YOU ARE RUINING IT FOR THE REST OF US.    But instead I had a G & T.  After almost 5 years of no sleep, I don't have the energy to write anonymous notes.  ;-)

2009/3/26 Darla

Has anyone ever had this diagnosed on the NHS or privately?  And has anyone's kid had the operation to remove tonsils and or adenoids?

 

The penny has finally dropped that this is a big part of 's sleep problems.  We have written to the Doc asking for him to have a look at the anatomical structure when he does the endoscopy next week.   I imagine that we will have a tough time, however, no matter what the GI's opinion, getting this type of surgery (no doubt it will require a sleep study, etc) on the NHS.  Every time I've taken him in for sleep problems to the GP I am greeted by big sighs - we just can't seem to convince anyone of the duration and extent of his sleep troubles. 

 

I got the impression from the GP that hysterical parents harass him every waking minute of the day with their kids sleeping problems. (I'm sure people like my neighbour who thought the world had come to an end when her perfect child suddenly started waking at 7 instead of 7:30 - I mean MY GOD HOW WAS SHE GOING TO COPE WITHOUT THOSE 30 MINUTES SLEEP????? and I am not even joking.  <bangs head on desk>)  (see all that blabbing, right there, that I just did? that's why I can't post on the Internet, it take me so long to say abosfreakinlutely nothing at all)

 

If we can't get it on the NHS we can get a family member (who is a paed surgeon) to do the op but would obviously, prefer not to have to resort to this drastic measure.

 

Please, anyone share any opinions, advice or experience.

 

Thanks,

Darla ~

[Guest guest]

It's very easy to diagnose: it involves wearing a probe on a finger or toe

overnight attached to a SATs monitor which can produce a fancy print out for the

entire night period. If the SATs dip above a certain freuency each hour below a

certin percentage (my figure was dropping to 80%)then sleep apnoea is diagnosed.

However, whether (if he had apnoea) will wear the sleep mask attached to

the CPAP machine is entirely another matter. It feels like a gale blowing in

your throat until you get used to it.

Margaret

PS Papworth can diagnose and they have referrals from all over the country.

>

> Has anyone ever had this diagnosed on the NHS or privately? And has

> anyone's kid had the operation to remove tonsils and or adenoids?

>

> The penny has finally dropped that this is a big part of 's sleep

> problems. We have written to the Doc asking for him to have a look at the

> anatomical structure when he does the endoscopy next week. I imagine that

> we will have a tough time, however, no matter what the GI's opinion, getting

> this type of surgery (no doubt it will require a sleep study, etc) on the

> NHS. Every time I've taken him in for sleep problems to the GP I am greeted

> by big sighs - we just can't seem to convince anyone of the duration and

> extent of his sleep troubles.

>

> I got the impression from the GP that hysterical parents harass him every

> waking minute of the day with their kids sleeping problems. (I'm sure people

> like my neighbour who thought the world had come to an end when her perfect

> child suddenly started waking at 7 instead of 7:30 - I mean MY GOD HOW WAS

> SHE GOING TO COPE WITHOUT THOSE 30 MINUTES SLEEP????? and I am not even

> joking. <bangs head on desk>) (see all that blabbing, right there, that I

> just did? that's why I can't post on the Internet, it take me so long to say

> abosfreakinlutely nothing at all)

>

> If we can't get it on the NHS we can get a family member (who is a paed

> surgeon) to do the op but would obviously, prefer not to have to resort to

> this drastic measure.

>

> Please, anyone share any opinions, advice or experience.

>

> Thanks,

> Darla ~

>

[Guest guest]

Thanks, Margaret,

He would wear the mask if we role played it at home.  The only problem that we have is that his sleep apena appears to be intermittent.  I have no idea what triggers it, it must be allergie or something causing enlargement in his throat so scheduling a study might not provide results that are accurate.  Do you know if sleep apnea can be intermittent or triggered by some environmental cause?

 

Thanks,

Darla

 

 

2009/3/26 mcollins2001uk

It's very easy to diagnose: it involves wearing a probe on a finger or toe overnight attached to a SATs monitor which can produce a fancy print out for the entire night period. If the SATs dip above a certain freuency each hour below a certin percentage (my figure was dropping to 80%)then sleep apnoea is diagnosed. However, whether (if he had apnoea) will wear the sleep mask attached to the CPAP machine is entirely another matter. It feels like a gale blowing in your throat until you get used to it.

MargaretPS Papworth can diagnose and they have referrals from all over the country.

>> Has anyone ever had this diagnosed on the NHS or privately? And has

> anyone's kid had the operation to remove tonsils and or adenoids?> > The penny has finally dropped that this is a big part of 's sleep> problems. We have written to the Doc asking for him to have a look at the

> anatomical structure when he does the endoscopy next week. I imagine that> we will have a tough time, however, no matter what the GI's opinion, getting> this type of surgery (no doubt it will require a sleep study, etc) on the

> NHS. Every time I've taken him in for sleep problems to the GP I am greeted> by big sighs - we just can't seem to convince anyone of the duration and> extent of his sleep troubles.> > I got the impression from the GP that hysterical parents harass him every

> waking minute of the day with their kids sleeping problems. (I'm sure people> like my neighbour who thought the world had come to an end when her perfect> child suddenly started waking at 7 instead of 7:30 - I mean MY GOD HOW WAS

> SHE GOING TO COPE WITHOUT THOSE 30 MINUTES SLEEP????? and I am not even> joking. <bangs head on desk>) (see all that blabbing, right there, that I> just did? that's why I can't post on the Internet, it take me so long to say

> abosfreakinlutely nothing at all)> > If we can't get it on the NHS we can get a family member (who is a paed> surgeon) to do the op but would obviously, prefer not to have to resort to> this drastic measure.

> > Please, anyone share any opinions, advice or experience.> > Thanks,> Darla ~>

[Guest guest]

Darla

 

Consider having your son reviewed by a holistic dentist. If the shape of his mouth is not ideal, i.e. very high palette or very crooked teeth, he may not be able to get a good airway when he is sleeping- continued reduction in the amount of air he can inhale may eventually be like an apnea as the body tries to awaken him to get him to breathe more deeply.  A friends son used to snore and have really bad sleep patterns, within a few weeks of wearing a specialist brace he began to sleep refreshingly.  There was a fantastic article in WDDTY about 18 months ago linking poor mouth shape with ADD ADHD and a number of other conditions.

 

 I am not in favour of removing any organs and definately not removing any adult teeth either- the reason they are crowded is because the mouth is not the correct shape- it is not about the teeth being too big. I have not come across conventional medics who share my and my dentists views on airways and dentistry. It just seems to make sense to me... I know that if I was being sleep deprived by fighting to maintain my airway, I would be really grouchy and off key too.

 

Regards

 

 

Has anyone ever had this diagnosed on the NHS or privately?  And has anyone's kid had the operation to remove tonsils and or adenoids?

 

The penny has finally dropped that this is a big part of 's sleep problems.  We have written to the Doc asking for him to have a look at the anatomical structure when he does the endoscopy next week.   I imagine that we will have a tough time, however, no matter what the GI's opinion, getting this type of surgery (no doubt it will require a sleep study, etc) on the NHS.  Every time I've taken him in for sleep problems to the GP I am greeted by big sighs - we just can't seem to convince anyone of the duration and extent of his sleep troubles. 

 

I got the impression from the GP that hysterical parents harass him every waking minute of the day with their kids sleeping problems. (I'm sure people like my neighbour who thought the world had come to an end when her perfect child suddenly started waking at 7 instead of 7:30 - I mean MY GOD HOW WAS SHE GOING TO COPE WITHOUT THOSE 30 MINUTES SLEEP????? and I am not even joking.  <bangs head on desk>)  (see all that blabbing, right there, that I just did? that's why I can't post on the Internet, it take me so long to say abosfreakinlutely nothing at all)

 

If we can't get it on the NHS we can get a family member (who is a paed surgeon) to do the op but would obviously, prefer not to have to resort to this drastic measure.

 

Please, anyone share any opinions, advice or experience.

 

Thanks,

Darla ~

[Guest guest]

Thanks, Tracey, that's interesting.  He does not have a small mouth or crowded teeth (his teeth are straight and not overlapping).  I do remember the examining paediatrician on the maternity ward telling me that his mouth was slightly malformed - she pointed out the top lip frenulum and said that it was very thick and indeed he does have a gap between his front teeth where that excess tissue is.  Also, she said that his upper pallate was unusual or something, I can't remember.  It's never cause problems but I will take your advice and make sure we have ruled that out as a possibility before we undertake any surgery.

 

We have a good dentist and has an appointment in a couple of weeks, can she assess this or would I need to go to a holistic dentist?  and what is a holistic dentist?

Thanks,

Darla

2009/3/26 Tracey Clewer

Darla

 

Consider having your son reviewed by a holistic dentist. If the shape of his mouth is not ideal, i.e. very high palette or very crooked teeth, he may not be able to get a good airway when he is sleeping- continued reduction in the amount of air he can inhale may eventually be like an apnea as the body tries to awaken him to get him to breathe more deeply.  A friends son used to snore and have really bad sleep patterns, within a few weeks of wearing a specialist brace he began to sleep refreshingly.  There was a fantastic article in WDDTY about 18 months ago linking poor mouth shape with ADD ADHD and a number of other conditions.

 

 I am not in favour of removing any organs and definately not removing any adult teeth either- the reason they are crowded is because the mouth is not the correct shape- it is not about the teeth being too big. I have not come across conventional medics who share my and my dentists views on airways and dentistry. It just seems to make sense to me... I know that if I was being sleep deprived by fighting to maintain my airway, I would be really grouchy and off key too.

 

Regards

 

 

Has anyone ever had this diagnosed on the NHS or privately?  And has anyone's kid had the operation to remove tonsils and or adenoids?

 

The penny has finally dropped that this is a big part of 's sleep problems.  We have written to the Doc asking for him to have a look at the anatomical structure when he does the endoscopy next week.   I imagine that we will have a tough time, however, no matter what the GI's opinion, getting this type of surgery (no doubt it will require a sleep study, etc) on the NHS.  Every time I've taken him in for sleep problems to the GP I am greeted by big sighs - we just can't seem to convince anyone of the duration and extent of his sleep troubles. 

 

I got the impression from the GP that hysterical parents harass him every waking minute of the day with their kids sleeping problems. (I'm sure people like my neighbour who thought the world had come to an end when her perfect child suddenly started waking at 7 instead of 7:30 - I mean MY GOD HOW WAS SHE GOING TO COPE WITHOUT THOSE 30 MINUTES SLEEP????? and I am not even joking.  <bangs head on desk>)  (see all that blabbing, right there, that I just did? that's why I can't post on the Internet, it take me so long to say abosfreakinlutely nothing at all)

 

If we can't get it on the NHS we can get a family member (who is a paed surgeon) to do the op but would obviously, prefer not to have to resort to this drastic measure.

 

Please, anyone share any opinions, advice or experience.

 

Thanks,

Darla ~

[Guest guest]

Hi DarlaMy son had his adenoids removed two years ago. He had it done at the same time he had grommets inserted. The ENT surgeon suspected they were enlarged and found them to be huge during surgery. He has very low tone and cannot close his mouth so does breathe through his mouth. But until he had the surgery he couldn't physically breathe through his nose. Now he can, he just doesn't. I would see an ENT surgeon for an assessment as they should be able to tell you if it's a problem. Also my husband has had a couple operations for nasal polyps and deviated septum which can also make it very hard to breathe.If you can't get an NHS referral quickly, I can highly recommend our ENT surgeon - he specialises in children and is great. He does private and NHS in London. We had it done privately and our insurance paid for it. The waiting list on the NHS was about six months and my son was so ill after six months of constant ear infections and six courses of antibiotics in this time that I honestly wasn't sure he would make it. I know that sounds overly dramatic but he was just so severely ill. We really lost him during that time. He also had almost complete hearing loss. (This was before I knew about SCD and biomed). My GP never even mentioned grommets or adenoids to me - just kept giving me more antibiotics. I've since found out the protocol is an ENT referral after five or six ear infections within a certain amount of time but should be quicker when there is a speech delay - my son is non-verbal so I feel we were really let down. His website is quite informative:http://www.ent4kids.co.uk/index.phpGood luck!To: Autism-Biomedical-Europe From: rexel4@...Date: Thu, 26 Mar 2009 17:52:52 +0000Subject: Obstructive Sleep Apnea

Has anyone ever had this diagnosed on the NHS or privately? And has anyone's kid had the operation to remove tonsils and or adenoids?

The penny has finally dropped that this is a big part of 's sleep problems. We have written to the Doc asking for him to have a look at the anatomical structure when he does the endoscopy next week. I imagine that we will have a tough time, however, no matter what the GI's opinion, getting this type of surgery (no doubt it will require a sleep study, etc) on the NHS. Every time I've taken him in for sleep problems to the GP I am greeted by big sighs - we just can't seem to convince anyone of the duration and extent of his sleep troubles.

I got the impression from the GP that hysterical parents harass him every waking minute of the day with their kids sleeping problems. (I'm sure people like my neighbour who thought the world had come to an end when her perfect child suddenly started waking at 7 instead of 7:30 - I mean MY GOD HOW WAS SHE GOING TO COPE WITHOUT THOSE 30 MINUTES SLEEP????? and I am not even joking. <bangs head on desk>) (see all that blabbing, right there, that I just did? that's why I can't post on the Internet, it take me so long to say abosfreakinlutely nothing at all)

If we can't get it on the NHS we can get a family member (who is a paed surgeon) to do the op but would obviously, prefer not to have to resort to this drastic measure.

Please, anyone share any opinions, advice or experience.

Thanks,

Darla ~

Windows Live Hotmail just got better. Find out more!

[Guest guest]

Well,it's the local hospital Darla - St 's so you should be able to see

him easily on the NHS.

Margaret

>

>

> Hi Darla

>

> My son had his adenoids removed two years ago. He had it done at the same

time he had grommets inserted. The ENT surgeon suspected they were enlarged and

found them to be huge during surgery. He has very low tone and cannot close his

mouth so does breathe through his mouth. But until he had the surgery he

couldn't physically breathe through his nose. Now he can, he just doesn't. I

would see an ENT surgeon for an assessment as they should be able to tell you if

it's a problem. Also my husband has had a couple operations for nasal polyps

and deviated septum which can also make it very hard to breathe.

>

> If you can't get an NHS referral quickly, I can highly recommend our ENT

surgeon - he specialises in children and is great. He does private and NHS in

London. We had it done privately and our insurance paid for it. The waiting list

on the NHS was about six months and my son was so ill after six months of

constant ear infections and six courses of antibiotics in this time that I

honestly wasn't sure he would make it. I know that sounds overly dramatic but

he was just so severely ill. We really lost him during that time. He also had

almost complete hearing loss. (This was before I knew about SCD and biomed).

My GP never even mentioned grommets or adenoids to me - just kept giving me more

antibiotics. I've since found out the protocol is an ENT referral after five or

six ear infections within a certain amount of time but should be quicker when

there is a speech delay - my son is non-verbal so I feel we were really let

down.

>

> His website is quite informative:

>

> http://www.ent4kids.co.uk/index.php

>

> Good luck!

>

>

> To: Autism-Biomedical-Europe

> From: rexel4@...

> Date: Thu, 26 Mar 2009 17:52:52 +0000

> Subject: Obstructive Sleep Apnea

>

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>

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>

>

> Has anyone ever had this diagnosed on the NHS or privately? And has anyone's

kid had the operation to remove tonsils and or adenoids?

>

> The penny has finally dropped that this is a big part of 's sleep

problems. We have written to the Doc asking for him to have a look at the

anatomical structure when he does the endoscopy next week. I imagine that we

will have a tough time, however, no matter what the GI's opinion, getting this

type of surgery (no doubt it will require a sleep study, etc) on the NHS. Every

time I've taken him in for sleep problems to the GP I am greeted by big sighs -

we just can't seem to convince anyone of the duration and extent of his sleep

troubles.

>

>

> I got the impression from the GP that hysterical parents harass him every

waking minute of the day with their kids sleeping problems. (I'm sure people

like my neighbour who thought the world had come to an end when her perfect

child suddenly started waking at 7 instead of 7:30 - I mean MY GOD HOW WAS SHE

GOING TO COPE WITHOUT THOSE 30 MINUTES SLEEP????? and I am not even joking.

<bangs head on desk>) (see all that blabbing, right there, that I just did?

that's why I can't post on the Internet, it take me so long to say

abosfreakinlutely nothing at all)

>

>

> If we can't get it on the NHS we can get a family member (who is a paed

surgeon) to do the op but would obviously, prefer not to have to resort to this

drastic measure.

>

> Please, anyone share any opinions, advice or experience.

>

> Thanks,

> Darla ~

>

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>

>

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>

>

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> _________________________________________________________________

> View your Twitter and Flickr updates from one place – Learn more!

> http://clk.atdmt.com/UKM/go/137984870/direct/01/

>

[Guest guest]

Thanks, very much, .  We unfortunately recently lost our private health insurance as part of a budgeting cut.  You don't have any idea how much the consults and surgery actually cost, do you?  We paid for a previous op and it actually wasn't too expensive. 

 

Thanks very much for the information, I really appreciate it.

Darla x

2009/3/27 McReynolds

Hi DarlaMy son had his adenoids removed two years ago.  He had it done at the same time he had grommets inserted.  The ENT surgeon suspected they were enlarged and found them to be huge during surgery.  He has very low tone and cannot close his mouth so does breathe through his mouth.  But until he had the surgery he couldn't physically breathe through his nose.  Now he can, he just doesn't.  I would see an ENT surgeon for an assessment as they should be able to tell you if it's a problem.  Also my husband has had a couple operations for nasal polyps and deviated septum which can also make it very hard to breathe.

If you can't get an NHS referral quickly, I can highly recommend our ENT surgeon - he specialises in children and is great.  He does private and NHS in London. We had it done privately and our insurance paid for it. The waiting list on the NHS was about six months and my son was so ill after six months of constant ear infections and six courses of antibiotics in this time that I honestly wasn't sure he would make it.  I know that sounds overly dramatic but he was just so severely ill.  We really lost him during that time.  He also had almost complete hearing loss.  (This was before I knew about SCD and biomed).  My GP never even mentioned grommets or adenoids to me - just kept giving me more antibiotics.  I've since found out the protocol is an ENT referral after five or six ear infections within a certain amount of time but should be quicker when there is a speech delay - my son is non-verbal so I feel we were really let down. 

His website is quite informative:http://www.ent4kids.co.uk/index.phpGood luck!

To: Autism-Biomedical-Europe From: rexel4@...Date: Thu, 26 Mar 2009 17:52:52 +0000

Subject: Obstructive Sleep Apnea

Has anyone ever had this diagnosed on the NHS or privately?  And has anyone's kid had the operation to remove tonsils and or adenoids?

 

The penny has finally dropped that this is a big part of 's sleep problems.  We have written to the Doc asking for him to have a look at the anatomical structure when he does the endoscopy next week.   I imagine that we will have a tough time, however, no matter what the GI's opinion, getting this type of surgery (no doubt it will require a sleep study, etc) on the NHS.  Every time I've taken him in for sleep problems to the GP I am greeted by big sighs - we just can't seem to convince anyone of the duration and extent of his sleep troubles. 

 

I got the impression from the GP that hysterical parents harass him every waking minute of the day with their kids sleeping problems. (I'm sure people like my neighbour who thought the world had come to an end when her perfect child suddenly started waking at 7 instead of 7:30 - I mean MY GOD HOW WAS SHE GOING TO COPE WITHOUT THOSE 30 MINUTES SLEEP????? and I am not even joking.  <bangs head on desk>)  (see all that blabbing, right there, that I just did? that's why I can't post on the Internet, it take me so long to say abosfreakinlutely nothing at all)

 

If we can't get it on the NHS we can get a family member (who is a paed surgeon) to do the op but would obviously, prefer not to have to resort to this drastic measure.

 

Please, anyone share any opinions, advice or experience.

 

Thanks,

Darla ~

Windows Live Hotmail just got better. Find out more!

[Guest guest]

Oh, yes, you are right, Margaret, I sent off that other email before I looked at the site.  That is within our PCT, so I should ask for referral there.  Woo hoo, this might not be as hard as I thought it would be.

 

Thanks,

Darla x

2009/3/27 mcollins2001uk

Well,it's the local hospital Darla - St 's so you should be able to see him easily on the NHS.Margaret >>

> Hi Darla> > My son had his adenoids removed two years ago. He had it done at the same time he had grommets inserted. The ENT surgeon suspected they were enlarged and found them to be huge during surgery. He has very low tone and cannot close his mouth so does breathe through his mouth. But until he had the surgery he couldn't physically breathe through his nose. Now he can, he just doesn't. I would see an ENT surgeon for an assessment as they should be able to tell you if it's a problem. Also my husband has had a couple operations for nasal polyps and deviated septum which can also make it very hard to breathe.

> > If you can't get an NHS referral quickly, I can highly recommend our ENT surgeon - he specialises in children and is great. He does private and NHS in London. We had it done privately and our insurance paid for it. The waiting list on the NHS was about six months and my son was so ill after six months of constant ear infections and six courses of antibiotics in this time that I honestly wasn't sure he would make it. I know that sounds overly dramatic but he was just so severely ill. We really lost him during that time. He also had almost complete hearing loss. (This was before I knew about SCD and biomed). My GP never even mentioned grommets or adenoids to me - just kept giving me more antibiotics. I've since found out the protocol is an ENT referral after five or six ear infections within a certain amount of time but should be quicker when there is a speech delay - my son is non-verbal so I feel we were really let down.

> > His website is quite informative:> > http://www.ent4kids.co.uk/index.php> > Good luck!> >

> To: Autism-Biomedical-Europe > From: rexel4@... > Date: Thu, 26 Mar 2009 17:52:52 +0000> Subject: Obstructive Sleep Apnea> > > > > > > > > >

> > > > > > > > > > > > > Has anyone ever had this diagnosed on the NHS or privately? And has anyone's kid had the operation to remove tonsils and or adenoids?

> > The penny has finally dropped that this is a big part of 's sleep problems. We have written to the Doc asking for him to have a look at the anatomical structure when he does the endoscopy next week. I imagine that we will have a tough time, however, no matter what the GI's opinion, getting this type of surgery (no doubt it will require a sleep study, etc) on the NHS. Every time I've taken him in for sleep problems to the GP I am greeted by big sighs - we just can't seem to convince anyone of the duration and extent of his sleep troubles.

> > > I got the impression from the GP that hysterical parents harass him every waking minute of the day with their kids sleeping problems. (I'm sure people like my neighbour who thought the world had come to an end when her perfect child suddenly started waking at 7 instead of 7:30 - I mean MY GOD HOW WAS SHE GOING TO COPE WITHOUT THOSE 30 MINUTES SLEEP????? and I am not even joking. <bangs head on desk>) (see all that blabbing, right there, that I just did? that's why I can't post on the Internet, it take me so long to say abosfreakinlutely nothing at all)

> > > If we can't get it on the NHS we can get a family member (who is a paed surgeon) to do the op but would obviously, prefer not to have to resort to this drastic measure.> > Please, anyone share any opinions, advice or experience.

> > Thanks,> Darla ~> > > > > > > > > > > > > > > > > > > > __________________________________________________________

> View your Twitter and Flickr updates from one place – Learn more!> http://clk.atdmt.com/UKM/go/137984870/direct/01/>