My son was diagnosed very recently so we've only been a part of the Chiari community for a very short period of time. And during this small timeframe we have already faced many challenges that I have seen a lot of people in the community vent about.

My son has been suffering with severe headaches for a year but we just figured out a little over a week ago Chiari Malformation has been the cause all along. He also just got over the flu and I believe that having that has made his symptoms 100x worse. He has been waking up every night screaming in pain bc his ears are ringing/hurting and bc of his head. He has been so extremely fatigued to the point where he begs me to go to bed every night and falls asleep within seconds. Keep in mind my son is typically very hyperactive and HATES going to bed. His behavior is out of control and I believe it's due to how he's feeling. He also was sent home from school today bc he randomly threw up. Even tho he was totally fine after, it's school policy that he can't return tomorrow. He is in kindergarten and has missed so much school bc of his symptoms and bc he will frequently vomit for no reason.

His first neuro appointment is monday. We will get a better idea at how bad it is and the treatment plan. I took him to his pediatrician today after picking him up from school to make sure he did not have an ear infection (he usually gets one every other month since birth) and to make sure he was recovering well from the flu. She said his ears look completely fine and he looks good. I made the mistake of bringing up Chiari Malformation... I asked if these pains and symptoms are from that or if the flu could make his symptoms worse. She looked at me like I had an arm growing out of my head. She then tried to come up with a dumb and nonsense excuse for every symptom I mentioned and doubted he even has Chiari even tho he was diagnosed in the ER by a freaking neurosurgeon... She dismissed everything I said and gave me zero reassurance. I asked her why his ears and head hurt him so severely that he wakes up everynight screaming for 3 weeks straight if nothing's wrong. She obviously didn't have an answer so she tried to turn it on me and blame it on me. She said well maybe it's bc he's staring at screens all day (when she came in the room my son was playing an educational game on my phone 😑) he does not start at screens all day...

I'm not getting too upset yet.. she obviously doesn't know what she's talking about. I'm trying to keep holding on to hope for his neurosurgery appointment in a few days. I'm praying for answers and I'm praying that they will take him seriously...