New to Chiari 1 malformation

Hi in the fall our son who is now 3 was diagnosed with Chiari 1. I am curious and wanting to find a group who can help me understand how he might be feeling and how I can beat help him.

Hi Jennifer,

You sound like a great, empathetic mom. I was diagnosed with Chiari when I was 3; I’m 33 now. I can try to answer any questions you may have based on my own experience. What are you wanting to know?

Hi Rachel and Jenn

Welcome to our Chiari community. You’re both absolutely in the right place; although this group is small, they are kind and they totally “get it”.

I’m Seenie, one of the admins here and I noticed that both of you have your complete real name as a screen name. We advise strongly that your screen name should be anonymous, to protect your privacy.

I am going to go to your pages, and alter your screen name to something more private. If you wish to change your screen name, you can do that yourself by clicking on your avatar (upper right) > person icon > preferences. Or let us know by private message to ModSupport. (About/Contact > click on ModSupport > click on “Message”.

If there’s anything else we can help with, please let us know! That’s what we’re here for.

Seenie

How does he feel?

He was born early and when he was about 5 weeks old he stopped breathing. I took him to the er and they said it was acid reflux. I knew that wasn’t it. He’s my 5th baby and my other had reflux but never stopped breathing. The er nurse told me to stay for observation the dr said I could go home the nurse behind him was shaking her head for me to stay. So we stayed. Again they told me reflux a few days later we went home then that night we went to Texas children hospital desperate knowing it’s not reflux. They told me that the formula the other hospital moved him too wasn’t needed. We just put him on amino acid formula.

While in Texas children they saw him turn blue then said it’s reflux.
So fought with every pedi gastric dr to tell them they are wrong.
He even slept with a heart monitor on that had gone off several times.

Fast forward to September 2020 he woke uo 5-6 time crying at night by 6am when I needed to go to work I when yo pick him up from his crib and he screamed in pain. My husband laid him on the sofa and he stayed there all day never moved once not even to the restroom. Then my husband tried to get me to remember when the baby had a stiff neck before and I just couldn’t. The next day he had no improvement so I took him to the er thinking it was meningitis because he had gotten a lot of mosquito bites over the weekend. They ran every test they could, did chest X-ray, ct scan and was getting ready to do a lumbar tap. The doctor came in and told me he has Chiari malformation of 5mm. I was relieved to not have to do a lumbar tap but now worries what Chiari is.

So I went home with some print outs from the er doctor and was told to see a pedi neurologist in the morning. Which I scheduled and we went the next morning that dr looks at the ct scan and says no it’s 9mm so he ordered a mri so we go do that I get a cd he same day and I took it to work the next day and I put it in the computer and my doctors who’s a periodontist reads it with me and I get a phone call says I need to come in that afternoon to the neurologist. I wasn’t scared because I already saw and read that his Chiari was 11mm. The neurologist told me that he couldn’t help us anymore that I needed to see a neurosurgeon.

So we have at Texas children’s but the doctor said oh we will wait and see what happens. No answers no solution to fix it.

So how do I know when it’s Chiari or him just being mean when he lashes out.

You and your son and your family have been through so much in his short life and I’m so sorry you’ve had to experience all this.

I can’t know exactly what your son is feeling of course, but I can share some of my experience of having chiari and being diagnosed at a similar age. The path to my diagnosis was much less traumatic than your son’s, but I did have decompression surgery when I was 4 and had to stay in the hospital for four nights. I have very vivid memories from that week and that time in general. I remember going to so many doctor visits and not really understanding what was going on or why I had to be there or why they wanted to examine me. I felt confused and overwhelmed and I just wanted to be in school with my friends like a normal kid. I can remember feeling scared. While I don’t remember feeling pain, I know that I was in pain. I had headaches and I didn’t understand that it wasn’t normal for someone my age to feel that way.

I can’t say why your son is lashing out, but I do imagine that he also feels scared and confused and overwhelmed with so many traumatic visits to the doctor. It sounds like he’s also experiencing extreme pain which is distressing for an adult to go through, and he’s such a young child. He’s probably also picking up on your stress and fear for him—which is totally natural of course!—and can tell that something is wrong. Maybe he doesn’t have the words to articulate so many overwhelming emotions and experiences. I myself didn’t begin to process it all until I was 14.

Something that I wish my parents had done for me is to find me some type of support group, so I could meet other kids with chiari or similar rare conditions and feel less alone in my experience. It probably also would have been a good idea for me to see a counselor or therapist to help me process and put words to the scary things I was experiencing and feeling. Perhaps these things would benefit your son too, especially if he’s lashing out already.

I don’t know what treatment your son will need, but, for what it’s worth, my surgery was very successful—and it was almost 30 years ago, when there were fewer options than there are today. I live a happy, normal life. I do live with chronic pain, but I’ve also learned how to structure my life in a way to minimize its impact. And because I was diagnosed so young, as with your son, there is no memory of a “before” to compare things to.

My heart goes out to you and your son. As a new mom myself, I can’t imagine how difficult and scary it must be for a parent to navigate all this. But you’re doing so well already by trusting your instincts, advocating for him, and seeking out this community. I hope you get some answers soon and that you can find him the help he needs.

Thank you Seenie!

Wow thank you so much that was very helpful! Also you don’t remember pain from the surgery or after?

Jenn

I know I experienced pain, but I don’t remember what it felt like, if that makes sense. I think I was just too young.