I’m hoping to find somethingto either tell me I’m making a bigger deal than I should, or that I’m not insane for stressing. In March, my 17 month old had an MRI (he was 15 months then) that came back a mild malformation. The doctor called me 20 minutes later, while I was driving my son home from his MRI, and told me over the phone. I was a wreck. My husband, his father, went through this at the same age and had to have surgery. The thing is, he made it sound microscopic, that it was nothing to stress about. Of course, I did stress. I read and read and read. I noticed these quirks he has, others are experiencing as symptoms. Excessive thirst, tantrums, seizures, banging his head on the ground, etc. Well, his neurologist suggested Keppra for his seizures. It was so bad. It enhanced his temperament issues, he lost his appetite, and still had seizures. His Dr also told me, he will either grow out of it or he won’t, that we would just monitor it.
I decided to take him off the Keppra, his attitude and appetite went back to the way it was, but his seizures were worse. He started shaking harder and would drop things.
I went to a genetics councilor today because I’m 24 weeks pregnant. They spent more time talking with me about my son’s MRI results than my daughter’s chances of having this (which they told me was 50/50). She explained he had an 11mm malformation and it was type 1 and there was note of fluid build up, that it was minimal though. She also said him banging his head on her floor was a sign of having a headache.
I went to his Dr appointment later that day and told him I took him off his medicine and he told me if I refused to treat the seizures, then there was nothing he could do for us. I asked him what about monitoring his malformation, he said that it didn’t present with any symptoms, so he is fine. I am not going to lie, momma bear syndrome kicked in. I could not believe he was telling me my child, unable to speak for himself, wasn’t having any symptoms. I asked about headaches, and him banging his head. He told me that’s not a sign. I reminded him he started the same way as his father, with seizures and they’re getting worse. He has a small bubble on the right side of the back of his head that’s soft. He didn’t agree with me on any of this. So I asked for a second opinion.
He sent a referral to a subpar office, I called to verify if they specialized in it, they said no. So I called Duke medical University, where my husband was treated, and they have 50 pediatric neurosurgeons who specialize in chiari malformation. I called his Dr office back and told them I needed to go to Duke, this was my child and I wanted the best. They’re supposed to call me tomorrow to see if he approves it.
Am I crazy? I feel like he has these symptoms. He went from being a happy normal child to moody, mean, and I’ll more than he isn’t. I also feel like he shouldn’t have been so nonschalant about it all. I’m so stressed out. I know 11mm is small, almost half an inch, but to me it feels like a mile. Any advice? Sorry for the book.