Hello Everyone, I was reading the discussions and I have a lot of questions. My 10 year old son was diagnosed with Chiari 1(6mm). He was having headaches off and on but, also complain of his head being sore to the touch, he is very active but lately he has been laying around a lot sleeping. As I was reading the discussion I had some questions. will my son 6mm grow larger as time goes on? Will his condition worsen as he gets older?
My daughter was diagnosed at ten also her chiari is 9mm she has always had head sensitivity. After seeing a couple different neurologist it has become a waiting game. It’s hard to say if when and how the chiari will affect her as she grows. But that is basically what I am waiting for is for her to grow because as she does the chiari may extend farther or not. From what I read everyone is different. Best of luck.
Also her iron was extremely low which can cause people to sleep more. Have the doctor check it. That could be a possible reason for sleeping so much. We had a sleep study done because it can affect a person’s sleep where they are not getting good rest but definitely have iron checked.
Amount of herniation has nothing to do with symtoms. There is an awesome pedatric group specific. On Facebook. Called conquer pedatric chiari please join the group. 
he can be having just enough pain from high pressure of csf causing his symptoms. Good luck prayers. FYI. Chiari can stay the same or get worse over time or even over night.
Goodluck …prayers
Hello. My son was diagnosed at age 10 as well. My doctor had him tested after I was diagnosed due to his issues since he was a baby. We played the game of different test, doctors and theories his entire life. When I was diagnosed my doctor immediately sent him in for testing. Here is what I was told by some of the top neuros who study and treat Chiair in children in Texas. I was told do not rush for surgery. He is still developing and his body could correct itself. He has seen many patients reverse as they age. (Not saying everyone will). That sleeping is very normal at his age not only from the CM but also his age. Put him on a healthy diet and let him be a kid. My son did the same thing. Extremely energetic and then non. Now he is 12 and he is back to his old self. He still has headaches often and we have mri yearly. I say all of this to say I was devastated to know my child was suffering like I was but I was relieved to hear he did not need surgery at this point. So I just let him sleep as much as he needs. I did realize stress makes it worse so teaching him to cope with day to day. I pray your son is doing well. Stay strong I know it is tiring.
Mylife said:
Hello. My son was diagnosed at age 10 as well. My doctor had him tested after I was diagnosed due to his issues since he was a baby. We played the game of different test, doctors and theories his entire life. When I was diagnosed my doctor immediately sent him in for testing. Here is what I was told by some of the top neuros who study and treat Chiair in children in Texas. I was told do not rush for surgery. He is still developing and his body could correct itself. He has seen many patients reverse as they age. (Not saying everyone will). That sleeping is very normal at his age not only from the CM but also his age. Put him on a healthy diet and let him be a kid. My son did the same thing. Extremely energetic and then non. Now he is 12 and he is back to his old self. He still has headaches often and we have mri yearly. I say all of this to say I was devastated to know my child was suffering like I was but I was relieved to hear he did not need surgery at this point. So I just let him sleep as much as he needs. I did realize stress makes it worse so teaching him to cope with day to day. I pray your son is doing well. Stay strong I know it is tiring.
Thank you it was very encouraging
Hi! I’m probably not much help, but perhaps I could offer some comfort
My name is Regan, I’m 15 years old, and was also recently diagnosed with CM1, 6mm herniation as well. I was/am a very active musician, and used to play for hours, daily. About five months ago, I started having symptoms, and the pain was increasing to the point of 3 ER visits in just a couple weeks. I am also very tired constantly, and even slept a solid 18 hours once…!!! Fatigue is normal for Chiari patients, and sometimes, rest is the best.
I just want you to know it will be okay. Your son just needs your love and support (and, based on you just being here, it’s clear he is getting it :)). It’s so frustrating, for both the child and the parents, when something is wrong but nothing can be done, and all you can do is wait. My main advice is to just be as understanding as possible. So many people just assume how I’m doing, or completely overlook my thoughts and feelings, and that is honestly the most irritating thing about being a CM patient.
Basically, offer love, support, understand what he’s going though to the best of your abilities. It’s going to be hard, especially if he has to wait and grow it out. You don’t have to pretend everything is perfectly fine, and it is okay to be worried and scared. Just know that everything will be okay, and that you are doing the best you can 
️
Good luck and best regards!
Regan
Thanks so much for your support
Hello everybody. I’m new to this forum and our family is new to CM. We were told the other day that our 2 1/2 year old grandson has CM1 (per a recent MRI). This is the first that we’ve heard of this. My wife and I babysit Mason Monday-Fridays (we are both recently retired). He had been complaining of headaches for several months now. Our daughter (his mother) took him to the doctor several times over the past few months trying to figure out what was going on. He was finally given an MRI this week. Since the news, we’ve been a complete wreck. We’ve been trying to learn as much as we can in this short time. I must say, thank you so much Regan (above post) for your words of encouragement. Your words mean the world to me right now. We have no idea at this point what Mason’s complete status is until we see his doctor (hopefully this coming week). I have so many questions, concerns, worries…you name it. I’m sure you all know what I’m talking about. All we can do is pray even more for Mason (and everyone for that matter).
Can anyone advise me of what type of pillow I can get Mason to hopefully help him sleep better? He usually wakes up 2-3 times a night. He complains of a headache about once a day or sometimes twice a day. The headaches seem to come when he coughs or sneezes. His appetite is okay kinda. Sometime he doesn’t want to eat all day, but he will drink a shake (one of those toddler protein shakes) everyday before his nap, and he will always say “yes” to a cookie! haha He is very outgoing and has a ton of energy. We have six grand kids, but Mason is the only one that has this going on. No one else in our family has this that we know of.
I’m sorry if I posted this in the wrong place. Like I mentioned earlier, I/we are new to this and this forum. I will make it my life mission to do as much as I can to help the cause. I had never heard of this before, and after reading about it I feel guilty for not knowing about it and how it has effected so many people. I pray for all that have
this. God Bless you all and please help us help Mason. Man…this is just killing me. I find myself crying everytime I think about this. I know we’ll all get through this…
Sammy (aka Papa)