2 year old granddaughter has Chiari malformatin type1

[Mimi1219]

she was just diagnosed and we are going to see the nuerosurgeon on Tuesday is there any advice or help anyone can lend us? She is really young so that's a plus we know, but we are just really scared. Thanks

[cdavis1963]

My son, Brier, is 3 and has chiari 1. He is scheduled for surgery on Nov.12. We are scared to death but he suffers everyday. The chiari causes a gag reflux and cough in him which causes severe head pain. He screams bloody murder and begs for someone to help him.He then throws up.This happens at least 6 times a day now. His herniation is 12mm. He can't even play like normal because it causes so much pressure in his head. He has fits of rage because of the constant pain he is in all the time.He is uncontrollable and will then look at me with tears rolling down his face and say,"Mama , I'm sorry don't be mad at me, I don't feel good this day" My heart is breaking and I am absolutely
exhausted. The headaces are even during the night.I hope you can find help for your daughter. My best advice is study and look for alll the info you can find on chiari, it can have so many affects on different people. I was diagnosed last year myself. Mine is not bad enough for surgery yet but I still have alot of neck and upper back pain and stay so tired. Good luck. My email is ***@**** if you or anyone else would like to talk about our experience with this journey.

[selmaS]

I don't know where u r from, but there are experts out there on chiari.......try the chiari institute or the ASAP site.......

All my best to u and ur daughter.....no one deserves sto suffer thru this especially a child.

Good luck
Godspeed
"selma"

[mwilliams1919]

my daughter is also 2 and was diagnosed with type 1. She was having horrible vertigo so badly she couldn't stand up. they gave her steroids and it got better that was 6 months ago now the migraines and neck pain has returned. no one seems to know what to do with a child so young with this disease every time she has symptoms they say she has a cold or acid reflux the probability of a head ache in a 2 year old even with a cold are low, but the probability of a 2 year old with a lot a headaches and no visible signs of any cold, allergies, or flue are even less likely. I am seeing the only 2 pediatric neurologist in my area and no answers any one tell me how to watch by baby in pain and no one will help her.

[Jeano70]

My son was diagnosed with Chiari 1 after a surgery  at 6 months to corrct crainial synostosis (premature closure of the soft spot on the top of his head).  Luckily, he has been asymptomatic since then and he is 4 1/2 year old now.    Since the dx, he has follwed up every 6 months with his neurosurgeon and once a year has to have a head and full spine MRI.   He can't ever be involved in any contact sports, has been advised to stay away from trampolines, the bouncey gyms that are all the rage and will always have an increased risk for cervical injury.  It is a scarey thing to deal with, but as a parent you find the best hospital and doctor in your area and do your best.  

[(Not so) Spunky]

First, I am so sorry to hear this. I just had the surgery and couldn't IMAGINE a child going through it- although I hear it is "easier" on them. Do you know the size of the herniation? Does she also have a syrinx? Are her symptoms interfering with her quality of life? Some Chiari patients won't need the surgery if symptoms aren't bad/or there is no syrinx. And each surgeon is different. Some have a wait-and-see approach, while others want to deal with it now, rather than later. I think alot will depend on how bad her symptoms are. Keep us posted!!