This isn't a question as much as informational....
My son passed away at the age of 8 on March 29, 2008. His cause of death is listed as "complications due to Chiari Malformation Type 1". Due to sleep apnea that was caused by the Chiari, my son simply, slowly stopped breathing and passed in his sleep. Dr. G: Medical Examiner presented his case on the episode that aired on January 18, 2010 titled "Bruised and Battered." I am presently on a mission to contact every pediatric neurologist in the state of Florida. My request is that when a child is diagnosed with Chiari 1, they should then be tested for sleep apnea so they can be treated if it is found. The few cases I find documented of sudden death in children from Chiari 1 are from sleep apnea. These deaths are very rare, but they do happen. Just because they are very rare, should the medical community ignore steps to avoid them completely if possible?
I have always had mild sleep apnea. The night of my PFD surgery I stoped breathing, my husband who was in the room sleeping panicked, when the machines went off. He got the nurse and woke me. I calmly told him I have sleep apnea which he wasn't really aware of.
I am sorry for the loss of your son, this is heart breaking. I am glad you're brining awarness to the dangers of sleep apnea. Even as someone who has it, I have never given much thought to the dangers and will change my thinking going forward,
Dawn, I am SO SO SORRY for your loss! I cant even begin to imagine your pain but i certainly applaud your efforts to raise awareness! Good job dear! If there is ever anything we can do just let us know! (((HUGS))) Shannon
Dawn, So sorry to hear about your son. I really was not aware this could happen. I knew about the sleep apnea but not that you could stop breathing enough to never wake up. God bless you for getting the word out. Also, your angel Garion. xo
Dawn....my heart is breaking for you...I have 3 sons of my own and I couldn't even imagine what you are going through.
You are so right this issue should never be ignored and it is so great that you are taking a stand. I applaud your strength and determination!! Like the rest..if there is anything I can do to help, please ask!
I am so very sorry for your unfathomable loss! I, like Carolyn, also have three sons of my own and can not begin to imagine your heartbreak. God bless you for working to spread the word to the people who can make a difference. Your post has been on my mind all day, and I only just now found the words to write you. If there is anything you need, call on us, please!
Your strength in such a hard time is inspiring. My son is 7 and was recently diagnosed with Chiari. So many doctors are so quick to dismiss Chiari as something not to worry about. When my son was diagnosed his family doctor said "it's no big thing and I wouldn't worry about it if my child had it". Then we saw the ped neurologist who ordered an MRI to confirm the diagnosis(his Chiari was originally found on a ct scan). After that we were referred to a ped neurosurgeon who order CINE studies. But it wasn't until we saw the ped neurologist on follow up that a sleep study was ordered. The neurologist assumed the neurosurgeon would order it but when he didn't (and he was in shock that it wasn't even talked about with us) he ordered it asap. Bless you and your family for what you all have gone through and I pray that there isn't any other family who has to go through what you all have due to a doctor ignoring Chiari.
May the Lord comfort your heart and bring you joy once again. I am so very sorry for the loss of your son. It is just heartbreaking that something which *could* have been treated caused your son's death.
Thank you so much for sharing your vital message to help prevent another death!
Mom to six wonderful blessings from the Lord
There have been cases also of sudden death from brainstem herniation causing cardiac arrest, once by a boy falling down flight of stairs. I had severe symptoms, seizure episodes and altering levels of consciousness, hydrocephalus and I remember them saying , " don't worry... U can't die from this!"... Granted it's rare, but nonetheless... I'm so so sorry. We need to do a lot to change the way medicine treats this so this doesn't have to happen!
I am so sorry about your little boy it is just heart breaking. I have a 7 year old that was born with craniosynostosis of his metopic suture that went undiagnosed and this last year we learned he has a a chiari but it has not been taken seriously as none of this has his whole life. It was suggested by a out of state doctor through email that he have a sleep study but his doctors blew it off. I will be scheduling that sleep study ASAP!
I just happened to turn the TV on the story tonight and it may have saved my son's life.
Your son has helped my son and others I have read here I am so sorry for loss I can't imagine what you have been through. You are a very strong woman and mother to share your story to help others and you will forever be in my heart. Thank you
It is amazing how ignorant doctors are when it comes to Sleep Apnea. I saw my doctor for this, so I could get tested and went to a sleep class with was all about Obstructive Sleep Apnea, I am sure I have Central Sleep Apnea. When I asked the educator about CSA she said she had never heard of it and didn't know there was more then one kind. She told me my research must be more up to date then her's!!
I got approval in the mail yesterday to schedule the 2nd class which in the letter states is to "test for a common sleep disorder called obstructive sleep apnea". I am just shocked. Doctor's can't seem to get past testing for things that are common...
Your son's death is a tragedy that could have been avoided if some doctor's weren't so negligent.
I am so, so sorry for the loss of your son. I actually saw the very end of that episode last night on Dr. G. I wish I could have seen the whole thing. I have for years occasionally woken myself up by not breathing. I did it just the other night and it scared me because I gasped when I breathed in. I was thinking that I may need to discuss that with my Dr. but thanks to your story I am def going to. BTW, he was a beautiful boy and my heart breaks for you.
I actually saw that episode last week and I was in shock after seeing it. I couldn't believe that the drs didn't even tell you he had it. I completely agree with you and I commend you for what you're doing because it is something that can't be ignored. I am deeply sorry for the loss of your sweet boy and I will praying for your family.
My baby brother passed away when he was 18 for "unknown cause of death" seven years later I was diagnosed with Chiari I and had decompression. They told my mom that in my brothers case sometimes the signal just doesn't make it from the brain in time and he just quit breathing; however, in my case it was affecting my heart and the signals were 20 minutes delayed.
Just saying all of this to thank you for your post and let you know how sorry I am for your loss. But I am glad you have the strength to try to make understanding of something that is so misunderstood.
And thanks you for also sharing a painful personal story with us, it helps give credence to the fact we all need to know just how Chiari may affect us....and that not all drs are well informed to help us.
I am so sorry and can't even imagine what that would be like. I know someone else who's daughter died in her sleep from the same thing. I am going to be contacting my daughter's doc tomorrow and see if she can have a sleep ap test done. That is if they can take payments because she has just had her medicaid taken away because I got married and we make too much money. Thanks for letting us all know
I am very sorry to hear about your son. I too have been diagnosed with Chiari Malformation Type 1. I underwent the decompression surgery almost a year ago and I am just now being scheduled for sleep apnea testing. What you are describing has been a constant worry for me. (mainly because it isn't something I want my children to deal with). I think what you are doing (informing others) is wonderful. And again...I am very sorry for your loss.
I am so sorry to hear of your loss. Thank you so much for sharing your story - it will probably save lives!
My son was diagnosed with Chiari 1 Malformation two days ago. We are still numb and scared - he is only 3. We meet with the neurosurgeon soon, and I am still coming up with my questions list - I will for sure be adding this to the list!! Thank you!
Wow.... I feel so enlightened.... sooo sorry for the loss of your son... thank you for reaching out to others....
So I have a 2mm herniation and haven't been given a dx for Chiari, but it is on the table... I didn't mention any sort of sleep apnea issues with any doc - well because I didn't think it was connected I guess (I have so many random problems I just brush some) - anyways I have woken myself up several times gasping for air in the middle of the night - its terrifying. In the past 3 weeks I've woken up in the middle of the night with a panic attack (I didn't know what was happening till I looked up my symptoms on the internet - never been dx). I feel like I'm going crazy, heart is racing, and I can't catch my breath - its a horrible feeling and I think I'm going to die or lose my mind. Also I have several times when I am awake when I just cannot catch my breath.
I have terrible daytime sleepiness - can't drive 10 min without gum/drink because I'll fall asleep. And I am a very restless sleeper... I'm thinking I need to look into this - how do you get a sleep test?!
In going through my 6 year olds medical records (for another health problem), I came across his mri from 2008. It stated a low lying cerebellum and some other things. Because an adult friend of mine has Chiari, I knew then what I was reading. I asked around for the best neurosurgeon in michigan and 3 weeks later he was in there. That same day he had another mri which showed his chiari had worsened. A week later he had surgery.
I am so thankful for the sheer coincidence of coming across his records when I did. I am so sorry for your loss and what you are going through!
Just saw your Dr. G episode yesterday... I saw your beautiful son and he drew me into watching. I came out of my seat when I heard Chiari. My son was diagnosed 11 years ago and has never had an apnea test. I had no idea!! I'm going to persue apnea testing. Thank you for letting Dr. G air your story. Garion is an angel to more than your family now.
This scares me so much because of my sleep disorder/breathing issues. So sorry for your loss. I wish this condition could get much much more coverage than it does so we would have more funding and better resources and doctors would be more aware of this.
I have been trying to get my eldest a sleep study like for ever! She sit up verry sudently in her bed while sleeping almost every night, and she also wet her bed many times a week. I have sleep apnea, and I know how it feel! But the doctors seems to think that I paranoi. Well thanks to your angel I will push to get her tested.
Dawn, I have no idea how long it has been since anyone has written you...It was so odd this morning when I just happened to touch on this particular post you had written and still have no idea how that came to be...I had watched that particular episode on Dr. G..It let me know then that if even she was confused about what she had found and had to ask some one else to help her figure out what she was seeing, how many countless other children, adults, patients and whatever go thru these things never even knowing they had them??? I know my own formation was just found on an incidental MRI that I had done back in 2000 & then again, the same formation was seen in 2002..I, too, have sleep apnea & had forgotten until I was reminded by Selma just what an important part it can play in these formations..I was truly upset that the neurologist that wanted me to have another sleep study done seemed to be disregarding my other symptoms that I saw as more important, when in fact, perhaps, she was right...Being seen by a nuerosurgeon on the 31st, I will make certain to get his take on this as this post truly brought me back to my senses on sleep issues and that sort of thing..I guess I wonder now when you hear of babies that suddenly die for no reason and their cause of death as labelled as sids if perhaps chiari 1 sometimes might be the true culprit there as they do effect so many facets of our every day lives...I applaud you for all the work you continue to do to bring this and so many other health issues to the forefront....There was yet another program on The Learning Channel back in 2002 that I had seen & truly from that point on, I had figured out myself without yet even having heard the results of my mri just what I was going to be told....Then again, this past December on Mystery Diagnosis, a young girl names Marissa was featured...It is programs like these that when people can and do have access to them, there is so very much to be learned...I just really wanted you to know that even though you lost your son, so much has and is still be learned from him.... Thank you.... lynda
My heart breaks for you. As a mother, I know what it is like to lose a child. My story is a lot different from yours but it hits home all the same. She was 12 weeks old. I have chiari malformation 1 and I also have a 14 month old daughter. My angel daughter passed away 6 years ago. I am going to have my DD checked out to see if she has it. I am actually watching Dr. G right now, and I think she is a phenomenal lady. Thank you so much for sharing your story with us.
Thank you for your post. I am always saddened for those who share my grief, for none of us should have to endure losing a child. I hope that the tests on your DD turn out to be negative, but if not, I strongly urge you to request the sleep study for her. May God bless you and your family in return for your kindness :)
Lynda, thank you so much for your post. Sometimes the positive things said in them come at just the time that I need the encouragement. I am so glad that the episode is still being aired and that people are still learning from it. It was the one reason we agreed to do it. I hope that you find answers that you seek from your medical advisors and that they will be attentive to your input as well. I will be praying for you.
I am sorry for your loss. You are doing a grea thing. My daughter is 7 and Ive been wondering if she has sleep apnea. She always wakes up tired and sweats like crazy in her sleep, no matter how cold it is in her room. I will now make sure she gets tested for sleep apnea.
I will most definitely request the sleep study. Thank you so much, you're a strong, wonderful woman!! I will always be here if you need to talk, vent or anything!! Thank you for accepting my friend request!!!
My son passed away when he was 7 weeks old. His death was listed as SIDS but on the autopsy report it says "low lying cerebral tonsils." Since then, I have been diagnosed with Chiari I. I also have a 5 year old son who complains of headaches and has very poor balance. I am going to get a MRI scheduled for him. (My 8 month old has a rare genetic disorder that causes seizures, strokes, and eventually death if not treated.) I will never know if my son's death was a true SIDS case or Chiari related but it has definitely made me more vigilant health-wise.
Dawn...I'm so sorry for your lost...but you're so strongh...I saw that Dr. G. episod, and I don't know why, but the name "chiari 1" was in my mind since that day...so on sunday my son, 4 years old, got a head x-ray, because he start with headaches three weeks ago...and they found chiari 1 malformation...so, discovery channel repeat this episod today and I got a lot of information about this condition...and I just want to ask my pediatritian's son a lot of cuestions...thank you for your straingh and you a example for me and for many mothers...thank you again...
I have seen Dr. G's show concerning the loss of your son due to central sleep apnea and Chiari Malformation. I also have Chiari and obstructive sleep apnea. A friend on Facebook has started groups in every state to work toward getting Ehrick Garion's law in every state so that doctors do not dismiss the Chiari w/o telling the patients or parents and that more information is given to the doctors to help them properly treat their patients.
Thank you for being willing to share your story although it was painful. Quite a few Chiari children have passed away from this condition. We do need more awareness. There are a lot of Chiari support groups on Facebook. Thank you again for sharing your story!
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