OT: Does anyone here have a child with Chiari malformation?

[JUJU814]

I'm wondering if there's anyone here that has a child with a Chiari malformation that is symptomatic.

My son seems to have an alphabet soup on stuff going on and during an MRI, they found this Chiari. Well, all of his symptoms CAN be caused by this.

We just got a consult to go see a neurosurgeon at Children's Hospital in Boston..finally! I got a quick appointment..the wednesday after I get back from my trip. We've been seeing the neurologist for a year now getting studies. Each follow up appointment took months to get.

If you have a child with a Chiari, did they do surgery? If not, and he/she is symptomatic, what do you do to alleviate their symptoms??

I'm feeling so overwhelmed. He sees a neuropsych for his ADHD, moods and social stuff, and goes to OT for the adhd and sensory issues, is being followed by the neurology department. Now they're referring us to a surgeon and a sleep specialist because it takes him 3 hours every night to fall asleep and he wakes at night..which could also contribute to his other symptoms, but also, the insomnia could be from this Chiari thing.

I'm so concerned about this little boy. All these appointments take so much time and mental energy. Hence, one of the main reasons I'm getting away with dd alone on vacation.

This is the only message board I frequent. If you have any experience with this, could you recommend a good forum? There are many and it's so easy to get carried away reading story after story.

Thanks in advance.

 

[simba20]

On another message board that I am part of, I knew a lady that had Chiari malformation. i think her kids (her son) was also in the early stages of being diagnosed or had a lot of syptoms with other things. Life got busy wither her and so she left the baord. She has a blog, and she's always on top of finding out the newest thing in this area. Her blog will laso have lots of links to groups/forums.

Here ya go:
http://chiarian.blogspot.com/

 

[Haganfam5]

My daughter (6) has a Chiari 1 malformation. It is the lesser degree of Chiari malformations but nevertheless Chiari. They found it on her MRI when she was a baby. She too had a bunch of things going on at the same time including congenital defects in her heart. The only symptom she had and continues to have is a lack of appetite. She never got hungry and always had trouble gaining weight. She is very small for her age too because of everything she had/has. I know things may get worse as she gets older but for now she seems to be fine with it. We just make sure she eats and push Pediasure for nutrition and calories.

I am so happy you are going to see specialists. They are the ones that are going to help you get through it all. My daughter does not have any of the symptoms of your son but maybe he has a different form of Chiari. I wish you and your son the best of luck. I don't think I helped you at all but I wanted to let you know that someone else was out there. Feel free to PM me if you would like. I hope everything goes well for you and your son.

 

[weswife]

MY DD has it as well. She has spina-bifida and hydrocephlaus. Anyway, she has had several MRI in her life. She does not seem to be bothered by it. Some of her symptoms are she will choke easily. Also has a breathing issue. She has not had surgery it was mentioned earlier on but then fell by the way side. I know there are several degrees of it. Just wanted to tell you about my DD.

I wish you all the best with your child.