Hi everyone. My best friends 6 year old son was diagnosed with Chiari last month. They are really going through a hard time with this. They have met with a neurosurgeon and he had an MRI on Tuesday. (Not so good news) His Chiari is 15mm and he has 2 cysts on his spin. The neurosurgeon is awesome and is willing to get a second opinion, but he wants to have surgery as soon as possible due to the fact if the cysts burst it could cause permanent damage. He also said that it is unusual to see a Chiari that size in a child. I have put together a lot of infomation for them that I have found and it’s helping them some, but I would like to know what kind of questions they should ask the neurosurgeon before the upcoming surgrey. They asked me to come with them to the next appointment because they forget to ask questions and it’s hard for them to process what the doctor is telling them. They are like family to me and my family, so I am doing whatever it takes to help. Also what are somethings that helped with the two weeks of bedrest for an active 6 year old?? Any ideas or suggestions will help. They’re son has had medical ploblems since he was 6 months old.
Hi, Faith. You are a dear friend. If you haven’t yet, check out the Chiari Info for memberd tab. This section in particular may be of alot of help to the parents as it has appointment guidance including questions- http://www.chiarisupport.org/page/finding-a-doctor
I don’t have a sick child, but I babysit young children regularly and some of the best things to keep a six-year old on bed rest distracted are an iPad or Kindle loaded with games and reading materials or dare I say, TV. I feel this is one of those rare times where almost nothing should be off table and any distractions that will help the child and parents cope can be utilized. Other options they can consider are soothing children’s music and his/her favorite toys that are conforting and don’t require too much effort to play with like favorite stuffed animals. If there are friends and relatives who can provide respite to the parents at times I am sure they would be grateful for this help as well. Caring for a young child on bed rest can be tiring physically and emotionally. Best of wishes to you and the family. Please keep us updated.
Thank you! I will pass along all of the great ideas.I will be there for them as much as I can. My son and Bryce, my best friends son, are as close as brothers and it’s hard to see what this is doing to the family.
He is scheduled to have surgery November 9th and they have not told Bryce what is going on yet. They don’t know how to explain it to him. So if any one has been through this with their child, how did you explain it to them??? Any advice is very appreciated.
Thank you! I will pass along all of the great ideas.I will be there for them as much as I can. My son and Bryce, my best friends son, are as close as brothers and it’s hard to see what this is doing to the family. He is scheduled to have surgery November 9th and they have not told Bryce what is going on yet. They don’t know how to explain it to him. So if any one has been through this with their child, how did you explain it to them??? Any advice is very appreciated.
My son is 13 years old and also has a Chiara with fluid build up.
We got 3 opinions and if it was just the Chiara they would not operate but the fluid build up can cause irreversible nerve damage. The best is just to research and also look up Conquer Chiara - has pictures of the operation.
There is something called brain slumping and that is when they take out too much skull - they need to ask if he just making room in the skull or are the shaving the top of the spine too?
Tanner goes for his surgery on 17th November - I will keep you posted.
When I got the news - I was devasted - I didn't sleep - thought about it the whole day.
Unfortunately as moms we just have accept that we are doing the best for our kids - it is hard as we are making all the decisions and if something goes wrong it will be our responsibility.
Not much is really known about Chiara - my son has emotional outbursts and his fine motor skills are not too good but gross is excellent. When I ask the neurosurgeon he says it has nothing to with with Chiara. He is also overweight which I think has something to do with the Chiara as he eats the same as us.
Keep in contact - and this is for you and your friend is lucky to have such a caring and understanding friend like you as Chiara is a very a lonely and unknown road xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
Hi my son who is 5 will have to go through surgery.we found he has chiari incidentaly as he is continously being investigated as he has an undiagnosed syndrome.my son doesnt talk so i dont know symptoms he feels and the intensity.he is delayed so its hard to understand him. Do you know the symptoms your friends son is feeling and he be going through with surgery?
I would love to know how Bryce is doing. I pray he is recovering well - I can’t imagine this surgery with a six year old.
My daughter is scheduled for surgery next week. She is 13, but has had many of her Chiari symptoms since before she started school. It took many years and many doctors to find the cause, but I feel we are now in the right hands.
Your friend is so very lucky to have her son diagnosed so early in life. I hope the surgery relieves his symptoms and this will soon be a memory for all of you!
Thank yall! Sorry it has taken so long to reply. Bryce did have his surgery. The neurosurgeon was amazing and walked all of us though it one step at a time. He was is the hospital for 4 days after the surgery, but when they sent him home they had to rush him back the same day due to brain swelling. He stayed in the hospital a few more days for the swelling to go down and for the pressure to reduce.
Bryce was a trooper through everything. After he got home he had a stiff neck and pain but he worked through it. He has done amazing! He had 3 MRI’s last week to see how everything has healed. They came back looking amazing! The neurosurgeon gave him the clear to start doing normal activities. He is able to play baseball and go to recess at school. Be a kid. Its been a hard time and we know that he may have to have more surgeries later in life but for right now he is going to take this as a victory. The bravest kid I have ever met.
I couldn’t think of much more to add. However, I did think of possibly some of his favorite cartoon character bedding. He will have to spend a great deal of time there, and you will obviously be freshening it up quite a bit. So, having some extra sets might be nice.
Also, they sell bed tents made of light nylon that can go over him. Hope this helps. Good luck in any decisions you and your family make.
Its been a hard time and we know that he may have to have more surgeries later in life but for right now he is going to take this as a victory. The bravest kid I have ever met.