Ormosen,
Very first off let me tell you that information came from the SIDS network which is a subsidary of the American SIDS Institute. The American SIDS Institute is at the forefront of SIDS research but being a trained nurse you should know this.....but since THEY do not know what they are talking about and YOU do, let me tell you a few things here.
According to that information the term near-SIDS was obsolete back when you were playing with Barbie dolls, which is why it is not found in any of the current (meaning 1998-present research I currently have done). I do have research dating as far back as the 50's before it was even called SIDS. This research is from Horizons, Vol. 1, No. 4, Spring/Summer 1995, California SIDS Program.
That term was introduced in the 70's yet in 1994 was considered to be a term that caused misinformation and misunderstanding.
I do appologize for what you are going through, however there are many mothers here that would love to be in your shoes having their child still whether or not they have special needs, you could lose him at anytime according to what you say, well at least you have had ample warning to savor every second.
You coming in here adding onto posts about children DYING is quite disturbing when YOU STILL HAVE your son and it borderlines on being sick, demented and morbid. He is still here. You have sung happy birthday to your child while most of us never got that chance, most of our angels were gone at Christmas while you have had yours for at least 2.
For being a trained nurse you really need to work on your common sense and your bed side manner, not to mention your spelling. You truly think your child is already gone and to sit there and talk like he is only indicates your need for perhaps some outside help.
My only suggestion to you is that on this site you can start different kinds of support groups, perhaps you should look into doing this and maybe you can find other mothers who share what you are going through?

I may reply more later, but for now let me just say THANK YOU to AngelChristiansMommy & Nicknicksmommy for their well written replies. We have never had drama in the SIDS community & I think this whole post proves that we are not willing to tolerate someone attempting to make us feel worse than we already feel.
Ormosen I am sorry that your child has experienced ALTE, but that does not make you a SIDS expert either from a medical or psychological standpoint. It appears you are more interested in causing confusion & distress than offering support or sympathy. Perhaps another community would better meet your needs.

NONE OF US ARE PATHETIC!!!! How dare you!!!!!? All anyone here is saying to you is S.I.D.S. is a permanant thing. there is NO grey area!!!!! Either your child is going to die from it or they are not. IT IS NOT A HALF ASS SYNDROME.... you do not need to be here if you cant stop the name calling. WE HAVE ALL LOST OUR BABIES, WE DON'T NEED TO PUT UP WITH NAME CALLING. you are VERY insensitive to other people's feelings. I am sorry that you and your son had to go through a (whatever it may have been) life changing event. we (as mothers) should have compassion for eachother. i would NEVER call another mother that has experienced a loss or incountered hardships anything negative. LIke i said i am truly sorry for your son, i wish nothing but the best for him, hope he can over come all obsticals infront of him. But, i am commited to my d.s. friends and you "seem" to fit the mold!

do NOT "seem" to fit the mold. sorry.

CLASSIC NEAR-SIDS

"This case has all the classic features of near-SIDS," stated the report's authors. Indeed, the infant appeared to be completely healthy before the episode and was within the age range of peak SIDS incidence (5 to 12 weeks). The infant--who appeared lifeless when his parents discovered him--was admitted to the emergency department, and ventricular fibrillation was documented.

Fortunately, the infant's caregivers were able to restore him to normal sinus rhythm with prompt defibrillation and mechanical ventilation. A prolonged QT interval was discovered, and the infant was treated with 4 mg/kg of propranolol and 10 mg/kg of mexiletine. He did not experience any additional arrhythmias.

At age 3 years, the child's QT interval was still prolonged, though not as severely (510 ms). "At nearly 5 years of age, the child remains free of symptoms, and there have been no neurologic sequelae," the study authors reported.

Had the infant died, he likely would have received a SIDS diagnosis, they suggested. Normal QT intervals in the parents and the loss of any chance to confirm QT prolongation in the infant would have eliminated the suspicion of the long-QT syndrome, the authors explained.

So, ormosen...you are stating that SIDS is preventable? That perhaps if we were more proficient in CPR our children would still be alive. Are you stating that the appearance of a long Q-T interval is "THE" answer to the mystery of SIDS?
Well since we all apparently "allowed" our children to die, why on earth would you want to be here?
Let me point out that the members here have treated you with far more respect than you have treated any of us.
We have not called you "pathetic" or "ignorant".
I once again believe that another community would better serve your needs & ask that you allow us to mourn our children without your interference.

I thank you ladies for putting things so nicely. There are many harsh words that I want to use right now, but the stress makes my PTSD go out of control and I am trying to stay off my meds. I just have to say that I am very compassionte about infant death now and when someone comes somewhere that parents are mourning and spouts their mouth off it just rages me.
I really hope the report you just posted was not your own because your child is not even 5 years old yet. He does not look like he has any retardations at all... looks like a normal little boy to me. I PRAYED that my little girl would make it and even be brain damaged... I could have dealt with that, but that is not the case. Are you trying to tell me that MY BABIES DAD DID NOT perform CPR properly? Or maybe it is because you are a trained nurse that you did it so much better??? Either way I am done with this becuause I am about to be nasty and I do not want that. I think of all the ladies in here, I may be the one who came closest to not having my child die from SIDS because she stopped breathing in MY arms during the day. SIDS KILLS... it doesnt almost kill. Ahhhhhhhhh I am so frusterated! I agree you should not have come here for support because you still have your child and we no longer have ours.. all we have are memories. Sorry for the bad typing and grammar but I m pissed off and not about to check my spelling!

I love all my DS SIDS moms!!!

you definetly are not the only one who has heard or experienced "near sids" or what i prefer alte my son jonah survived what the doctors labeled interupted sids had i not found him he would have passed i completley know what you went through i also have gone thru the same thing and it is difficult my son now has brain damage due to the lack of oxygen and i struggle every day to try to understand why me why did this happen to my baby and i will never get an answer but i am greatful that he is still here and i thank god for everyday he is here with me and my family i want you to know that you are not the only one who is dealing with this specific situation

My prayers and thoughts are with you!

It is still my firm belief that saying ALTE is the same or a subset of SIDS is perpetuating misinformation and misplaced guilt.

The reason no one here has heard of Near SIDS is because that is no longer what its called. It may have originally been incorrectly named Near SIDS years ago, but it has since been renamed because it is misleading and is now called ALTE. I am not trying to take away from the experience that either of you ladies have gone through and I do feel for you both, but this is a SIDS support group, maybe you all should see about starting your own group for ALTE.

i am new to this group and think i join at the wrong time i dont know where all the comotion came about but i just want to comment on angelchristiansmommy i understand completly that losing a child is the worst pain us as mothers have to deal with and i send my condolences to every one here i did not join this group to be singled out because my child survived and it is very rare that a child survives an what could have resulted in sids my son was classified an interuppted sids by the hospital not by my choice because my child survived does not mean i did not experience what everyone else on here has i was the one who found my son and it still haunts me every day i was told he was not going to make it and by some miracle he did does that mean well your son didnt die so go somewhere else we only want people here who lost a child this is supposed to be a sids support groups yes i almost lost my son to sids and your telling me to join another group?

I am sorry for what you have gone through, and I am not trying to dimish your pain or experience any. However, I can tell you that if my son survived I would not be in a support group looking for sympathy I would be spending every minute I could taking care of him and loving him and being thankful. I'm sure what you have experienced has been very hard, but the end result is not the same as ours and as we have already shown SIDS is not the same as ALTE, although there may be some minor similarities, it is NOT the same! Please don't take offense, just realize that it is upsetting A LOT of grieving mothers here right now and let it go. Thanks!

i find this sad i call it as i see it I know what happen to my son. I understand that people have lost the kids to SIDS but every one needs to understand that Near SIDS dose happen and to push out people that are trying to deal with it. Sorry I thought this was a place to help people deal with that they are going threw