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ormosen 
11:34am, July 30, 2008
my son was labeled with SIDS over almost 3 years ago. doctors could never really give me a strait answer as to was happen.
well here i am almost 3 years to the date and he is still with me, im wanting to get my son to see a specialist to find out whats really going on with him.
a back ground, he was pronounced dead and shortly there after they got a heart beat from him, dr said they have never dealt with that in such a young age.
i live in Wisconsin and have taken him to every dr around here and all of them say the same thing SIDS, im just wondering is and one know of a really good dr in the USA that i can take him too to have him checked out
already tryed to get help in the SIDS group and so ... most seem to be Bxxxx about it just looking for help if anyone knows
well here i am almost 3 years to the date and he is still with me, im wanting to get my son to see a specialist to find out whats really going on with him.
a back ground, he was pronounced dead and shortly there after they got a heart beat from him, dr said they have never dealt with that in such a young age.
i live in Wisconsin and have taken him to every dr around here and all of them say the same thing SIDS, im just wondering is and one know of a really good dr in the USA that i can take him too to have him checked out
already tryed to get help in the SIDS group and so ... most seem to be Bxxxx about it just looking for help if anyone knows
Comments
My son went into the hospital this Afternoon for trouble breathing, he broke out in hives, and his father don't feel the need to tell me why i am really worried about this i don't know what to do. I am staying with him is the hospital i am just worried caz i am not ready to lose him
My son’s Dame is Damien, and he is one of the 5% that survived. Damien was born on January 3rd 2006, a healthy 10lb boy, he was my 2nd child, every thing was going good, I had just taken him to a doctors appointment May 15th 2006, he got a few shots, everything looked good he was healthy. On May 18th 2006, Damien woke me up at around 4:00 in the morning, he seemed just fine. At around 9:00am I laid him back down to rest before I had to go into work. I started getting ready for work at about 10:00am nothing seemed unusual. I walked into my daughter’s room and told her to get her cloths on. I went into my son’s bed room to get him changed and ready to go. I noticed Damien’s color looked off but I thought it what just how the light was on him, I went to his dresser and grabbed some stuff then walked to his crib and that’s when I noticed that he was purple and cold with no pulse, I picked him up out of his crib and all I could do was scream I froze up, my daughter started freaking out in her bed room, I brought Damien into my bed room and called 911. As I was on the phone with the police I tried to give him CPR but I was unable to, his jaw was locked. It felt like an eternity before the ambulance got there. The Ambulance got to my house and took Damien, I was alone with my daughter in my house freaking out I had a hard time talking. The police were vary patient with me. I walked the officers around my house and showed them where he was when I found him. They went through all of my sons stuff. They let me take care of my daughter when they went through Damien’s stuff. Selena was not dealing with me being to upset. I finally got to the point where I was able to call someone I tried to call my mom since she was the one who was going to take me to work but she was not home, I ended up calling my boyfriend at the time David, I told him that something happen to Damien and he left his work to come take me and Selena to the hospital. I was able to get a hold of my family to let them know that something happened. When I made it into the hospital the first thing that happened was they put me into a family room. My family showed up soon after I did, The doctor came in and asked me if I wanted to see him, I really wanted to but before I want in the doctor told me that is was not looking good at all for him. The doctor took me into the room where Damien was, they had him lying on this table with a machine blowing air to help him breathe better. One of the nurses walked me up to Damien and told me that I could hold his hand, I was really scarred to I didn’t want to make anything worse I was able to walk up and touch his hand. Not even a few seconds latter the seizures started. They told me I had to leave and all I could do was stand out the window watching. The doctor took me back into the family room and told me to wait in there. The doctor came into to room and told me that there was nothing more he could do and with my permission they wanted to send him to a better hospital, I gave my consent and told them what ever they had to do. I had to go back to my place and get some clothing and stuff. When I came back to the hospital there were getting him set to go to a different hospital. The sheriffs department was there talking to my family, they were not to bad I know they were doing there jobs. The doctor ruled out abuse and after that I was able to leave and go to the other hospital where my son had left to only a few minutes before the sheriff left. I drove up to the hospital wile on my way I kept calling my sons father Michael. I went through some issues trying to get a hold of him. I finally made it up to the other hospital, St. Vincent.
Comments
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Wow this sounds so typical of a SIDS case, you are so lucky, SO lucky he is still here....
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i see why they said SIDS, or near SIDS, whatever it was that they told you. The situation is very much alike. As far as his jaw being locked, that sounds like something that could have been secondary to a seizure, or even a small stroke. I would definately seek out a specialist, the seizures may be something he has grown out of, my brother had them when he was an infant and grew out of them in time. And they never figured out why he had them. I dont know what else to tell you, I have never heard of a situation like this one. Talk to a pediatritian and see if they can refer you to someone. Good luck with your search.
if you are not here to help get the fuck off my profile
ormosen
I have never heard of this before. So, I would recomment talking to a doctor, just a regular pediatritian as far as the SIDS diagnosis. My son passed in sept. and after the autopsy found out it was not SIDS. It was the hospitals fault. But SIDS, the only scientific finding they have, medically speaking, is that it is a neurological defect. The brain just shuts off, dies. Everything else is statistics, no proof. I know this because before I found out what happened to my Jakob, I had my dad ask some docs at the hospital he works at. Specialists, and one who just finished research on a specific SIDS case. Not to be rude, but I dont believe it was SIDS, for that reason. He is still here, praise God, and any near SIDS cases I have read about the children have a lot of problems, brain damage..and they call it near SIDS because they can not diagnose what caused it. Has he had any problems since the episode?
Jakobsmommyalways
I wish I had the name of a specialist for you. I am so sorry for what you are going through. We lost my mother in-law five years ago the same kind of situation and she was brought back to us. She spent 6 months in acoma and has not been the same since.
I apologize for the way people in SIDS Group came across I think people just get a little to sore about things. Alot of it comes from guilt. If they are to accept Near-SIDS as a real incidence then they will turn that into guilt as to why they couldnt get the there babies fast enough. It's not personal in anyway. I lost my little girl to SIDS in June of 2007, and I know the one thing I had to accept was that there was nothing I could do, for some people accepting NEAR-SIDS is hendering them accepting their child could not be saved.
I know what you are going through I am so sorry, I know once you loose someone that way they are not the same person when they come back. If you find any information on a specialist will you let me know, just for my reference. We've gotten several opinions on my mother in laws case and haven't heard anything different either.
I hope all is well.
Kairismom
God Blees you hun I hope and pray you find a great Dr to help you through. I would start with a well know pediatrician who can help diagnosis all the problems your son now has. Once the medical conditions he suffers from are determined you can do research on Dr's available. Cesar Sinai, St Judes many Childrens facilities with specialist Dr. I have a wonderful friend who's son was born just after our Kairi last year. He survived open heart surgery and get's beeter every day. Catherine has a great blog that she has kept and I know she has done alot of reseach on sepeciality Dr to meet PeterBears needs. I will share he gink. God Bless you hun. Focus on those of us that want to help you through your grief and forget those who do not feel you belong. We all grieve differently and I'm sad for you. Talk any time I'm a good listener. I have a lot of Faith and believe no matter who you are or where you have been we are all Gods children and we need each other. Kairi's Grandma Terri
Angels4unme
http://krausebears.blogspot.com/20...
What an amazing little man. You have to see his green mohawk from when he had his heart surgery.... God Bless
Angels4unme