hello again, thanks ladies and twinsanity wow u have defo suffered to isnt it so frustarting when a doc whos job is to care for kids is so useless, we r due bk to see our paed in about 4 weeks time and god i cant wait to give him hell
the hosp we was referred to is one of the best in the uk, its great ormond street hopsital and i cant fault them one bit,
matthew was never ventilated and is not in the premature age for having this problem
i have read that cental apnea is less common that obstrivcutive apnea, i really dont know what can b done for central apnea, as it seems hes o2 levles dont drop to low but its still a worry that he stops bretahing so much and sometimes for 1 minute at a time, i worry about his future and the long term affects
well all we can do is wait for the MRI and pray nothing more serious is found
hes had a CT which was clear of tumours etc
but thanks so much for the support and help u have given me already
i just have to just keep on and fight for my son,
love natalie
hello new here
Matthew
Hi Natalie:
Let me offer my support as well, that's a heckuva burden you've got there, and hopefully you'll get some answers soon.
While these forums are usually concerned with some type of apnea, cases like yours and Twinsanity's remind us that are plenty of other serious breathing problems out there, and that sleep apnea is only one small segment of them.
Matthew probably has a book of information on him already, an equal amount of information needs to be uncovered, and explanations of the final diagnosis will probably fill a third. So I certainly realize the limitations of offering any kind of explanations for what's going on, and do so only in the spirit of trying to help in some small way.
A couple of things kind of stand out. Whenever we speak of sleep apnea, whether it's in adults or children, there is always a limitation, or some type of stimulus, that causes the apnea to terminate and normal breathing to resume. This can be a low oxygen level, a breakthrough snore, some sort of jostle to the brain, something. In Matthew's case, the terminating trigger, at least a few times, did not occur. So this does not sound like central, obstructive or mixed apnea in the typical sense.
Yet, if I read your accounts correctly, this only occurs at night. So we are still dealing with a sleep-related disorder. Also, from your description, it appears to be central, rather than obstructive, in nature.
There are perhaps two mechanisms that may be occurring. First would be just prolonged central apnea, which at that point becomes respiratory arrest. Your reporting of breath rates of 0-6 kinda point to that. The second possibility would be a reduction in the volume of breaths, occurring throughout the night. This could could create a buildup of CO2 in the blood, which would eventually culminate in the first scenario as well.
Were carbon dioxide measurements performed during your sleep studies? And was the carbon dioxide level measured during wake as well? This would have been done in the form of an arterial blood gas.
There's a bunch of info on central apnea on the AASA Website including some actual PSG recordings, which may supply some background information:
Central Apnea
At 15 months, non-invasive therapy such as BiPAP is really not an option. Children this age will not keep their therapy on, and it's clearly far too dangerous to risk that happening. If by chance these are somehow obstructive in nature, surgery would be the proper treatment, but it sounds like all that has been pretty much ruled out. But gad, an obstructive component is so often the cause of apparent central apnea in children, you always hafta keep it in the back of your mind. Did you know that if you completely clog up a kid's nasopharnyx, you can generate central apneas?
Have you either at least a potential diagnosis, and/or the genetic piece they are looking for? There are probably 4 or 5 entities that could create this scenario, I was wondering if they're leaning one way or the other yet.
Has the option of a tracheostomy and ventilator been presented to you? I know that sounds very aggressive, but a tracheostomy is not a difficult procedure, and given the level of safety you would attain with it, including guaranteeing receiving breaths through the ventilator, it would certainly keep you out of the dangers you have so far experienced. For children, a ventilator is nothing more than a sophisicated BiPAP machine. Seeing how fragile he is now, I fear what would happen if he should get an additional stress, such as a bad cold (see nasal obstruction) or bronchitis.
Stay strong.
deltadave
Let me offer my support as well, that's a heckuva burden you've got there, and hopefully you'll get some answers soon.
While these forums are usually concerned with some type of apnea, cases like yours and Twinsanity's remind us that are plenty of other serious breathing problems out there, and that sleep apnea is only one small segment of them.
Matthew probably has a book of information on him already, an equal amount of information needs to be uncovered, and explanations of the final diagnosis will probably fill a third. So I certainly realize the limitations of offering any kind of explanations for what's going on, and do so only in the spirit of trying to help in some small way.
A couple of things kind of stand out. Whenever we speak of sleep apnea, whether it's in adults or children, there is always a limitation, or some type of stimulus, that causes the apnea to terminate and normal breathing to resume. This can be a low oxygen level, a breakthrough snore, some sort of jostle to the brain, something. In Matthew's case, the terminating trigger, at least a few times, did not occur. So this does not sound like central, obstructive or mixed apnea in the typical sense.
Yet, if I read your accounts correctly, this only occurs at night. So we are still dealing with a sleep-related disorder. Also, from your description, it appears to be central, rather than obstructive, in nature.
There are perhaps two mechanisms that may be occurring. First would be just prolonged central apnea, which at that point becomes respiratory arrest. Your reporting of breath rates of 0-6 kinda point to that. The second possibility would be a reduction in the volume of breaths, occurring throughout the night. This could could create a buildup of CO2 in the blood, which would eventually culminate in the first scenario as well.
Were carbon dioxide measurements performed during your sleep studies? And was the carbon dioxide level measured during wake as well? This would have been done in the form of an arterial blood gas.
There's a bunch of info on central apnea on the AASA Website including some actual PSG recordings, which may supply some background information:
Central Apnea
At 15 months, non-invasive therapy such as BiPAP is really not an option. Children this age will not keep their therapy on, and it's clearly far too dangerous to risk that happening. If by chance these are somehow obstructive in nature, surgery would be the proper treatment, but it sounds like all that has been pretty much ruled out. But gad, an obstructive component is so often the cause of apparent central apnea in children, you always hafta keep it in the back of your mind. Did you know that if you completely clog up a kid's nasopharnyx, you can generate central apneas?
Have you either at least a potential diagnosis, and/or the genetic piece they are looking for? There are probably 4 or 5 entities that could create this scenario, I was wondering if they're leaning one way or the other yet.
Has the option of a tracheostomy and ventilator been presented to you? I know that sounds very aggressive, but a tracheostomy is not a difficult procedure, and given the level of safety you would attain with it, including guaranteeing receiving breaths through the ventilator, it would certainly keep you out of the dangers you have so far experienced. For children, a ventilator is nothing more than a sophisicated BiPAP machine. Seeing how fragile he is now, I fear what would happen if he should get an additional stress, such as a bad cold (see nasal obstruction) or bronchitis.
Stay strong.
deltadave
-
JimmyKSenior
- Posts: 42
- Joined: Thu Sep 22, 2005 9:50 am
Natalie,
I'm usually not one to get involved in these posts but I want to you to know you and your family are in our thoughts and prayers. I don't pray much anymore but I will do all I can. My wife and I have 14 year old twins and we almost lost one when he came down with a form of viral menegitis at age 4 and lost all muscle control. Those weeks give me a good idea of the pain and fear you have and the total feeling of helplessness that can come with being a parent in these situations. Just know there are many of us here to support you and pray for you!
Across the pond,
JimK
I'm usually not one to get involved in these posts but I want to you to know you and your family are in our thoughts and prayers. I don't pray much anymore but I will do all I can. My wife and I have 14 year old twins and we almost lost one when he came down with a form of viral menegitis at age 4 and lost all muscle control. Those weeks give me a good idea of the pain and fear you have and the total feeling of helplessness that can come with being a parent in these situations. Just know there are many of us here to support you and pray for you!
Across the pond,
JimK