My son Joji was diagnosed with chiari malformation, about a year ago. Before that he was diagnosed with syrinx, scolisis, kyposis and torticollis. He has recently been diagnosed with tethered cord. Although he has outgrown scoliosis, kyphosis and torticollis which was wonderful news!!!! My son is 2 and a half and absolutely loves life! He is such a joy to watch bounce around from one thing to the next. He had decompression surgery March 13 and was in and out of the hospital for three and half weeks after surgery, he acquired a double ear infection, sinus infection, mennigitis, and severe constipation. He also couldn't swallow and a large CSF build up so he had two spinal taps. My poor boy was terrified of doctors for weeks after. It was really a nightmare. He is doing better now, but he has been having spurts of lethargy this week. His face has also been swollen this week, he also is showing lack of pain. My son recently cut himself and didn't cry it was a bad cut and he didn't even react except to say a little Owe. This has scared us. My 7 year old daughter is going to be tested for Chiari on Monday, my 10 year old daughter is getting a swallow study at the end of the month. I also may have chiari as I have many of the symptoms I am afraid I have it, at times I feel it may be best if I don't know I have it. Well that's a little bit about my family and me. Looking forward to getting to know you all.
I'm sorry that you are going through all of that, but it does sound like your son is still really enjoying his life! I wasn't diagnosed with it, my neuro simply said my tonsils were a little low lying and sent me out the door telling me it's not a problem. I have over half of the symptoms. If you have the symptoms you should deffinately be checked for it as well. I really think sometimes ignorance truly is bliss, and I was so happy with what my doctor told me until I came home and realized after googling what is really going on. But i'm also so glad to know that my symptoms aren't all just in my head like i've thought they were for the past year. It's a little good to know what's causing the symptoms. Good luck on your family's upcoming tests! :)
The love you have for your kids jumps off the page. Your son sounds like an amazing beautiful boy. It's unbelievable how resilient kids are. They teach us so much. I have a son who is Type1 Diabetic and we almost lost him he was so sick by the time he was diagnosed. He spent 3 days in intensive care barely consious. Seeing him like that and how he handled everything gave me the courage to dump my uncaring dismissive doctor of over 10 years and look for a new one and answers why my chiari was getting worse and worse even though I was decompressed in 2001. I found 2 great doctors although it took over a year of living in agony and visiting numerous doctors. I am going to have a revision soon because scar tissue built up and is completely blocking my CSF flow. You sound like an amazing mom. I hope that your sons issues resolve and he completely recovers. Kids usually do so much better because they haven't had years and years for the damage to build up. I hope your daughters are okay. Having young kids is so time consuming but so wonderful. It flies by so fast mine are teenagers and I don't even know how that happened. Hold them close and breath in every sigle special moment with your beautiful family.I will pray for your family. So glad to have you here.
Wendy