Would You Let Him Suffer Longer?

@neildc (17253)
Lapu-Lapu City, Philippines
July 12, 2010 3:18am CST
I want to share a video clip of our son taken a few months back. I just finished uploading it to Youtube and Facebook. http://www.youtube.com/watch?v=XQkSjI-OYJk Can you imagine a patient like this? I know some would say it is exaggerating but to OceanTiara and Mentalward, they know how painful to see them sleep. Would you let him suffer longer or will you go on, insist the operation take place as soon as possible? If only you have enough and sufficient funds?
4 people like this
18 responses
• United States
12 Jul 10
Neil - Why does your son need surgery, and what kind of surgery or procedure would they be performing on him? I know quite a few people with sleep apnea, and not one of them has required surgery, even though some of them have quite severe sleep apnea. All of them have been successfully treated with breathing machines, so why would he need surgery rather than a breathing machine?
1 person likes this
@neildc (17253)
• Lapu-Lapu City, Philippines
12 Jul 10
hi PA. actually, we have not yet arrived to the decision of doing the operation, we are actually just doing the medication. six months medication was through and our son did better during that period. but after that, just about 2 to 3 weeks without the medicines, his sleeping problem came back, so the doctor recommended to do another period of medication. when this second time of medication seem to work well, he will be taking medicines again but until when? she said it could be necessary for our son to put under sleep study (which is a bit expensive) to determine if the tonsils are really affecting him or should it be removed immediately or when. in short, the operation is not yet being discussed as we still have to do the sleep study, if necessary after one month. i have asked the doctor about the machine. she told me that CPAP is not available in the Philippines and can only be imported, ordered from the US. but even with the machine, will the apnea be cured? will the machine removes the apnea for good? for you reference, here's the link to my previous post: http://www.mylot.com/w/discussions/2351618.aspx
2 people like this
• United States
12 Jul 10
What does the medicine do? What is it for? Do they think that your son's tonsils are enlarged or something and blocking his airway? I read the other discussion, although I did not go through all the responses, but I still do not really understand this particular case. In all the other cases that I have heard of, I do not think that medicine was used only the breathing machine. I do know that there are many different underlying causes of sleep apnea, however, so perhaps the machine is not needed if the medicine and/or surgery will treat the underlying cause of the problem. The CPAP machine will help with the sleep apnea, because it pushes air into the lungs while the person is sleeping, so it helps them to breath. Depending upon the cause of the sleep apnea, the person might have to use the machine for the rest of his or her life. I know some people that have had it as a result of smoking (damage to the lungs from smoking, etc.) and once they had stopped smoking for a while their breathing got better and they no longer needed the machine. I also know people that have had other health issues, such as being drastically overweight, and once the other health issues were addressed the machine was no longer needed. All these people did need to go to the sleep clinic and be monitored to be diagnosed, treated, and cleared when they no longer needed the machine, though.
1 person likes this
@neildc (17253)
• Lapu-Lapu City, Philippines
12 Jul 10
i am pretty sure she knows and saw how larger his tonsils are. she even said, hey look, they seem to be kissing each other. well, of course, not everything is explained or we get to understand everything when the doctors talk about the medicines, etc. at first she said, we take the medication as she hopes it can be cured. she said we take one step at a time. she said let's concentrate first with his allergies. maybe he has his allergies and it was cured, temporarily by the medicines. but the tonsils remain large and never shrink. though they are not swollen as i look at them, they are really large as they are kissing each other the adenoids (the one in the center which looks like a bell or a drop of water). i searched, i read and heard what CPAP is and how it will help the patient. but in our son's condition, personally, i don't see this as permanent treatment or it will ultimately cure his apnea. maybe it helps other patients with different cases, like the ones you mentioned (smoking, overweight). but our son is not smoking and we is even not a chubby kid.
1 person likes this
@Lakota12 (42684)
• United States
12 Jul 10
how awful dont know how he can stay asleep with that noise. SO hope he can get operaton soon sound so much like he needs it
1 person likes this
@neildc (17253)
• Lapu-Lapu City, Philippines
13 Jul 10
he really can't sleep well he always to toss turn flip, he always move his body. i really hope soon, soon, very soon if possible.
@Lakota12 (42684)
• United States
14 Jul 10
me too
@topffer (36402)
• Djibouti, Djibouti
12 Jul 10
Hello neil, I am sorry to see your son with this disease and I don't know what to say here : I suffered from this apnea till I was 15 : I was never operated, but I was wearing a sort of oxygen mask. Your video is touching and remember be bad souvenirs. For me an operation was not the best treatment, but, when I see your video, I believe that if you can do something, do it...
@neildc (17253)
• Lapu-Lapu City, Philippines
12 Jul 10
thanks for watching topffer. i know about the CPAP but our doctor said it is not available in the Philippines. if it is really needed we have to order a piece of it from the US which means a lot of money. you mean you had it too? how old are you now and are you really treated with just the machine? you do not suffer from apnea now that your older?
1 person likes this
@topffer (36402)
• Djibouti, Djibouti
12 Jul 10
I am 51 now Neil, and as I said my sleep apnea disappeared when I was 15, and I have never been operated for it -- I had an amygdalectomy when I was a child, with no results, but maybe it can help your son ? --.
@neildc (17253)
• Lapu-Lapu City, Philippines
12 Jul 10
what's "amygdalectomy" by the way? it's kinda new term for me, topffer.
1 person likes this
@syankee525 (6294)
• United States
12 Jul 10
yeah.. i think if they can do something to help to then i would have it done. my wife have it too.
@neildc (17253)
• Lapu-Lapu City, Philippines
12 Jul 10
does your wife still have it? or she undergone operation?
• United States
12 Jul 10
she still have it, she was suppose to go back for another test but she had a panic attack through the fist one
@neildc (17253)
• Lapu-Lapu City, Philippines
13 Jul 10
ok. but you see, apnea is more scary with kids although i am not saying it's ok for adult to have it.
@salonga (27955)
• Philippines
13 Jul 10
My friend, I watched the video and I am so touched. It would be too painful for the parent to see your son in such a situation. Why not try the FirstHand Foundation that I referred to you before? You can go and email them and they are very responsive. They will pay all the cost provided you present all the requirements which are but very easy to provide. I have a churchmate whose child went through an scoliosis surgery and it was the foundation who shouldered all the expenses.
@neildc (17253)
• Lapu-Lapu City, Philippines
13 Jul 10
yes my friend, i remember the foundation you mentioned in our private message few months back. i already sent a message, email message to them less than a week ago. but i still have not received a reply. i am still hopeful they will give attention to my email.
1 person likes this
@salonga (27955)
• Philippines
13 Jul 10
They are very responsive my friend. Here is the latest e-mail address where I could contact them: Pleas try again this: Alexis.Cole@Cerner.com
@neildc (17253)
• Lapu-Lapu City, Philippines
13 Jul 10
thanks my friend. i will try this one right now. i really appreciate it.
@dawnald (84146)
• Shingle Springs, California
12 Jul 10
So he's having some real problem getting air? I'd absolutely want him to have the operation if there was any way possible?
@neildc (17253)
• Lapu-Lapu City, Philippines
13 Jul 10
they are possible ways to treat the problem but i wish we can get the ultimate cure as soon as possible. as of this moment, the doctor tries to treat the allergies which she thought might caused the tonsils to get big. but when the medication is stopped, his sleep will go back to bad situation. there are CPAP machines but i don't think it will remove the problem, maybe temporary treatment to make him sleep better. none is available here and the doctor said it will be ordered from the US.
1 person likes this
@dawnald (84146)
• Shingle Springs, California
13 Jul 10
Must be really frustrating.
@neildc (17253)
• Lapu-Lapu City, Philippines
13 Jul 10
really frustrating dawn.
@CatsandDogs (13964)
• United States
12 Jul 10
I wouldn't even wait till I had enough sufficient funds because that poor child is suffering! He can very well die from that! He needs help NOW! Not when a person has enough money to pay. That shouldn't even be an issue! Children can't defend themselves.... they don't understand what's going on with their little bodies and need adults to fend for them and that includes doctors!
@neildc (17253)
• Lapu-Lapu City, Philippines
13 Jul 10
money really shouldn't be an issue. but this is the reality. who will do the treatment for free?
1 person likes this
@CatsandDogs (13964)
• United States
13 Jul 10
I don't mean the doctor won't charge anything (even though he should or at least help in some way being that it's a child) however, he may accept payments. If not, then the parents need to find a way to raise the money or they very well could lose their child. A child can't work so it can't raise the money so it's up to the parents to care for him. I don't mean to be harsh but most parents will scrape, beg and borrow to raise the money as they should because it's a child and even more so, their child.
@neildc (17253)
• Lapu-Lapu City, Philippines
13 Jul 10
it's ok and fine with me, i understand. and that is why i never stop working harder. i know it, they cannot work for them, but it's us parents. and are there parents who would like to see their child suffer like this? in the first place, we never asked for this to happen to him, to us. it so happened that we are not rich.
@vandana7 (68638)
• India
12 Jul 10
Hi neildc, that looks so sad. I agree as a parent you must be going through some hell watching the kid like that. I dont really know what sleep apnea is all about, but I do think operation is desirable. I dont know if there are other repurcussions, such as damage to some organ due to prolonged condition. If so, it needs to be done as soon as possible. If not, then it should be possible to wait for some more time till adequate funds can be accumulated. There are some ventilating equipments now available I think that are able to monitor oxygen intake. May be that would help.
@vandana7 (68638)
• India
13 Jul 10
Then I think you could consider using that machine for a while as the kid looks too young to undergo operation. As he becomes stronger, he would be able to cope with it better may be. But you are the parent, and therefore, the best judge more so because you know more about the ailment. I am really sorry. Your kid is really cute! Hope god takes care of him.
@neildc (17253)
• Lapu-Lapu City, Philippines
13 Jul 10
that's really a good idea, vandy. but when i talked about the machine, even the doctor hesitated and did not recommend using it. i am not sure, maybe because for the fact that the machine is not available in the Philippines and still have to order from the US.
12 Jul 10
Hi neil, Awwwww!! he is such a little cutey, I would push for the operation as this is very worrying, can you not ask for help in your office, like some sort of donations fro your son? if I had the funds I would send it to you with no questions asked, I will pray for the little one and hope he will get his op, soon, hugs. Tamara
@neildc (17253)
• Lapu-Lapu City, Philippines
12 Jul 10
hi tamara. well, i hope i can get some help soon. actually, we had enough money for the sleep test last december. but we were advised not to go on with the study by this doctor and told us to take the medication first. if wish i can tell you everything on here. if you have time, you can read the entire discussion i previously posted, http://www.mylot.com/w/discussions/2351618.aspx
@neildc (17253)
• Lapu-Lapu City, Philippines
13 Jul 10
if only the doctor will allow it now, Alice. and if we already have enough funds for the op.
@dhangski (3194)
• Philippines
12 Jul 10
Hi best. I saw the clip on facebook. And as I've told you on my comment, try to push through the operation. I'm a mother, and I don't want to see any of my kids suffering like that. If I'm in your shoes, if I have no sufficient funds for the medication and operation for my son, I would seek the help of an organization. I hope I could help you financially but you very well know what my situation is right now. What I can offer to you and your family right now is my never ending moral support and my prayers. Goodluck best. Kiss zayzay for me okay. HUGZ P.S. I have a proposal for you. Message me on YM or in Skype.
@neildc (17253)
• Lapu-Lapu City, Philippines
12 Jul 10
i will get in touch with you first thing in the morning tomorrow.
@neildc (17253)
• Lapu-Lapu City, Philippines
13 Jul 10
hi again best. i have another video posted on facebook. i hope you will find time to watch it too. oh by the way, this is the same video i posted on youtube. thanks again best for the support, as always.
@jaiho2009 (39001)
• Philippines
13 Jul 10
hello neil, Thu i don't have much knowledge with zay2's illness,one thing i can say is...just do the best for him. I know as a parent,you can find ways or remedy to resolve everything for the sake of your child. And,i wish you all the best,i am proud of you my brother.
@neildc (17253)
• Lapu-Lapu City, Philippines
13 Jul 10
so far, all that i can do is to work harder. but i don't think how long i will have to do this. thanks for always so supportive of me, with zayzay. thanks be to God, Jane.
@sagar21 (1583)
• India
13 Jul 10
Feel sorry for your son.. But If it was me I would never record it and broadcast it..it doesn't seem fair..?? sorry, if I said anything wrong.. I'm not that rich to lend you help..but I'll pray for him,his operation..and wish him a healthy recovery... "Get well soon Kiddo.."
@neildc (17253)
• Lapu-Lapu City, Philippines
13 Jul 10
hi. thanks for sharing your thoughts, and i respect it. well, i just hope i can get some help by posting the said video. i also find some of those kinds of videos elsewhere so i think it is fine sharing it. one more thing about recording it, it's a sort of documentation for the said ailment. and whatever happens next and along the medication and treatment, we may as well get back to the records and videos. this may as well help others who have similar case, similar problem in their sleeps. i really thank you for having you here. and for the prayers.
@Hatley (164468)
• Garden Grove, California
12 Jul 10
hi neildc this poor child get the operation if you have to write to your counselperson or whoever runs your government .that makes my chest hurt just to watch him trying to breath in his sleep.surely there is someway to get funds for this surgery. maybe some viewer of that video may be touched and wish to help. Hope you can dig up the money so he can have that surgery that will let the p oor child breathe right and sleep again. neildc if I had the money I sure would send it to you.
@neildc (17253)
• Lapu-Lapu City, Philippines
13 Jul 10
hatley, i appreciate that. i really hope i can get the much needed help from my posts. i have been doing this since the first time i know what could lead the apnea, what could happen to my son if not given the right attention and treatment. it really makes my heart bleed seeing him sleeps.
@cream97 (29166)
• United States
12 Jul 10
Hi, neildc . I am so sorry to see him going through this while he is asleep. I hope that he will be able to undergo the operation so that he will not go through this any longer. I feel very sad to see him not able to have an relaxing sleep like he should. I hope that he will be able to sleep so much better very soon.
@neildc (17253)
• Lapu-Lapu City, Philippines
13 Jul 10
thanks a lot cream. i know you also have a lot of trials facing right now. and i also feel sorry about it. but, at least we have to thank mylot, as we can share our problems with us and we listen. at least there's someone who listens to our problems.
• United States
12 Jul 10
just wanted to take a moment to tell you about sleep apnea, yes it can be scary especially to a parent of a young child. has he had a sleep study done yet? i come from a long line of sleep apnea (my family). my father got worse because of medical conditions, he had a sleep study done and received a sleep apnea machine. it forces oxygen into your lungs while you sleep at night. this is not painful. but since the machine he is so much better and life isn't passing him by any more. some of us just grow out of it for some reason. mine seems to come and go with weight and or stress. dad is getting a new machine-so he's giving me his old one. it is kinda odd at first but wow!! what a difference a good night sleep makes!! no surgeries. most insurance will pay for the machine and most of study. just an option-good luck and bless you!
@neildc (17253)
• Lapu-Lapu City, Philippines
13 Jul 10
sleep study has not been done with him yet. i thought we really have done it before but when we were suppose to do it, this present doctor told us not to do it until she confirms it, or after the medication. she tries to cure the allergies which she thinks made his tonsils larger than it should be for his age. i know about the CPAP machine. i heard a lot of it, i read a lot. but for how long will he use or depend on the machine if he is fit to use one? i want a permanent cure to the problem not temporary or indefinite. they said there is nothing to worry about the health of a patient if tonsils will be removed. then how come they cannot just decide about it. you see, medicine and machine will help the patient. but what will happen when you cannot subsidize anymore and you have to stop medication and using the machine?
@tomitomi (5441)
• Singapore
12 Jul 10
I follow the link. OceanTiara and Mentalward are right. It's 'painful to see him sleep'. Hope the video leads you to HOPE!
@neildc (17253)
• Lapu-Lapu City, Philippines
13 Jul 10
thanks for watching tomi. i really hope it gets positive feedback,
• Philippines
12 Jul 10
Hello neildc, Some how i got a very bad feeling that this is also happening to me. i don't know. i wish i could help but am in dire out of funds here just for my tooth removal, bah! i even discountinued it because the medications are too expensive, four dollars a day i hope you're son gets to operate soon. we pray for him.
@neildc (17253)
• Lapu-Lapu City, Philippines
12 Jul 10
thanks letran for thinking about helping us. well, this is really one kind of a painful experience not only for the patient but also for the parents. how can one be happy to see them suffer, instead of having a good night sleep, you see them gasping for air. yes mel, richnai is right, you just don't have the idea what this problem is and how it makes the patient suffer. rich, thanks for making it clear for meluan.
1 person likes this
• Philippines
12 Jul 10
Parents would never ever want to see their children suffer. If I have sufficient funds, I will push through with the operation to resolve this problem and even if I don't have funds, I might approach charitable institution. May be they can help.
@neildc (17253)
• Lapu-Lapu City, Philippines
12 Jul 10
my salary is not enough and i have no savings left. if relatives can't help i will be searching for some help from organizations or something. can you suggest something that we can approach to get help with this kind of problem?