Hi all, my daughter was diagnosed with Type 1, she is quite bad today, as we haven’t seen a Neurosurgeon yet. What meds can a 5 year old take as calpol and nurofen don’t even touch it! Any advice with this would be gratefully recieved. Thanks in advance.
Thankyou, we have had to come to hospital as her pain levels were quite high. They are goin to give her codeine as a regular med
I agree with Abby’s suggestion to try a cold pack to the back of her head and neck. I hope the codeine gives her more day to day relief. Keeping you guys in my prayers.
She has been given Diclafenic for the pain as it’s all over her body, her skin was quite sensitive today! The paeds specialist has told us today that she will defiantly need surgery as it will never get better but will get worse!!! they have arranged an MRI to show how much spinal fluid is reaching her brain n to check the top of her spine n then will arrange surgery a few weeks after that. To watch my little angel in so much pain is heartbreaking 
Matt, I agree with Abby…Ehlers Danlos patients have special needs with decompression surgery, that’s important to know. The surgeon should want to know this and if so screen for any congenital cranial cervical instability (basilar invagnation)or abnormal movement of her cranial cervical joints. Prayers your way, jenn
My daughter was 5 also when she was first diagnosed. She also had a 33% curve in her spine. She never had headaches before and only found out she even had Chiari because of her spine. She did have headaches after surgery but it was caused by fluid building up on the inside of her cerebellum. She did have to go back in for a second surgery and that took care of her headaches. I will say that going through this surgery at age 5 was much easier than age 15. She started having headaches at age 14 and since she really didn’t have them the first time I didn’t know if it was related so I called the Dr and they had us get an MRI. The MRI didn’t show much of her syrinx on her spine getting any bigger so we tried several medications for the next year trying to see if that would help. We went back for our yearly follow up with the ortho and her back got worse. It was at a 37% curve and they did another MRI and the syrinx was getting larger. She went back for her 3rd brain surgery and had some complications. After that we went back to the ortho 6 months later and her back was now at a 42% curve and that lead to spinal fusion surgery but they did an MRI to see where to put the rods and they found fluid on the back of her brain and had to go in ASAP for her 4th brain surgery. She did good and had her spine surgery which ended up being 2 spine surgeries. But the things I do recommend is getting the MRI cd and getting the reading of the MRI which takes a few days but I have used those to compare all her MRI’s. It’s hard seeing your baby hurt and not being able to do anything to help. It really is much easier at age 5 than age 15. They bounce back so much quicker.
Thanks for all the advice n kind words guys n gals. We have just found out that her chiari is 10 millimeters. Not sure what this means in the sense of severity???
Thankyou all for your support and information, am sure I’m doin ya heads in by now but am petrified incase anything goes wrong!