About three months ago my dd was at a playdate when some other girls that were there beat her up. I don't just mean play fighting or pushing, I mean holding her down while they kicked, punched, and spit on her. It was a nightmare. I know this sounds absolutely crazy because what kind of six year olds would do something like that? Anyway, I pressed charges and had her checked out at the ER. She wasn't showing any signs of a concussion so they sent us home.
Since that day she has been complaining of headaches. At first I figured it was from the incident and treated her with tylenol but after about a week I realized that she shouldn't be in that much pain anymore. I called her doctor who told me to give it a little more time and see if it went away. About two weeks passed and she hadn't complained until one night when she started screaming and crying about her head hurting. She threw up and said she was having a hard time seeing because it hurt so bad. I put her to bed with a cold rag and motrin and immediately called her doctor. We went for an MRI and then directly to a neurosurgeon when they discovered an abnormality.
It turns out, it was Chiari. Now here's where I'm confused. The surgeon explained that the Chiari is probably not what is causing her headaches because it's on the "mild side" even though she has them almost on a daily basis now for about a week at a time. After doing some research I found that they now say the size doesn't necessarily dictate the severity of the symptoms. Has anyone found this to be the case? He didn't even tell me the length and not knowing anything about it, I didn't know to ask.
I feel like I'm going crazy watching my little girl cry and not knowing what it is I should be doing for her. We have an appointment with a peds neurologist but the soonest they could get us in is the 19th of November and I'm so tired of waiting for answers so I'm hoping someone can provide me with some.
First, is this a condition that could get worse?
Here are a list of things that deal with, is it possible they are Chiari related?
-Dyslexia and speech delays
-headaches
-Symptoms of a UTI without an actual UTI. She's had multiple UTIs but she frequently gets painful urination and during these times has accidents. The doctors can't explain it since she's had ultrasounds of her bladder and kidneys and while I'm sure it's unrelated, I thought I'd throw it in just in case.
I'd love any answers or advice. I've been a mess trying to deal with all this lately.
The original person we saw was a pediatric neurosurgeon. It was very confusing when he said her headaches and what they found on her MRI were unrelated. It just didn't make sense to me. He is the one who is sending us to the pediatric neurologist.
We are always going to urgent care due to her UTI symptoms but so far she has only had two actual migraines that wouldn't go away with children's motrin. Most days she cries saying she has a headache but once the motrin or tylenol kick in, she is fine.
I have the cd of her pictures at already, I was sure to ask for that right away. Other than the bladder issues and headaches, I haven't noticed any other symptoms when it comes to her. The strange thing is, I have a ton of them (and I do mean a ton)! I'm not reading too much into it but I just found it interesting. The only other thing I could think of is that she used to have breathe holding spells and pass out when she was a baby. Most during immunizations but it was very scary. She hasn't complained of dizziness, vision problems, or anything else as of yet.
As far as what happened to her. It was pretty awful. I moved out of NYC and into the burbs to avoid my children growing up too fast. I'm not sure how six year olds can act the way they did, and the stuff they said shouldn't come out of a grown woman's mouth let alone a child's. I'm going to assume they must hear this stuff at home.
The only times she has ever complained about her eyes is when she is having migraines. She kept telling me her eyes hurt and she couldn't see as well. I know from having suffered from migraines myself that it's not uncommon so I chalked it up to that.
Your poor little girl! What mean, terrible children would do that to her? I'm horrified reading that. :(
I would honestly ask your daughter's regular doctor to try to get you a referral to a pediatric NS that specializes in Chiari. Sadly NL are for the most part useless to us. All of these issues definitely sound related to the chiari and the size of the herniation being equal to symptoms is most definitely outdated. Good luck to you!
I am having a hard time responding more than "wow." Truly unbelievable...and what did the other parents say? If my kid did that to another...they would need to be quaking at my reaction would be to them. grrrrr I am so sorry.
I don't have any advice better said than what is above.....
But, what I do want to do is to encourage you to keep those boxing gloves on and that momma bear spirit. I had a tremendously serious issue/issues with my son when he was young. I made doctors pissed, I went from one to the next, I read and researched and NEVER gave up. We finally got answers that were mind blowing to many and I was vindicated, and he was properly treated regarding something that could have been literally life-threatening. It started in infancy, and answered when he was 8 (he is now 21 and doing great)>
Keep goin, momma! Glean the wisdom on this board and the 'net and DO NOT stop until it ALL makes sense to you!
I also am so sorry that this happened. I am new to Chiari so I have no other advice to give you. However, I do know that post traumatic stress can also cause headaches and anxiety. My daughter was bullied in school and for an entire year she complained of severe headaches (to the point of vomiting) we pulled her out of school and now 3 years later she has no more headaches. I’m not trying to downplay the Chiari diagnosis, just giving you another avenue to look at. Good luck with this and my thoughts and prayers go to you and your precious daughter