I got a call from my sister on 12/5/2014 at 6:20PM that my lovely first nephew is in unconscious with crying. I flew to Atlanta Childrens Hospital from NJ Newark Airport at 9:30PM and arrived to PICU at 12:30AM and I could not stop crying to see my lovely nephew is repeatedly having seizure with repeated same weird act like yawn, anger and crying. At that night, doctor said that mycoplasma pneumonia found in his nose and probably something bacteria might cause any hurt into brain therefore my nephew have seizure , weird repeated act . and then doctor ordered to give anti biotic injections to remove bacteria of mycoplasma pneumonia and the after morning time, my nephew took MRI but my nephew was moved while MRI applied therefore just took 5 minute picture of MRI for Brain and then neurologist named my nephew diagnosis as ADEM finally.
My nephew got steroid start from Saturday to Wednesday for total five days and on Tuesday, to get detail MRI one more time, he got intubation with deep sleep status(induced medically coma) and then after we got detail MRI result that scary inflammations found at brains and nothing inflammation found at spinal cord. and then on Wednesday, in order to extube, respiratory technician touched my nephew and my nephew suddenly moved since doctor stopped medication of Midazolam and then my nephew bite tube and it was really scary situation since my nephew could not get Air from Tube. in that situation, doctor took tube to give air to my nephew and got serious trauma at neck so that my nephew was still have intubation and doctor said that we can not see how my nephew have been improved yet therefore need a plasma exchange and got three times plasma exchange and today took MRI but there are nothing improved yet when we compared 12days ago with current MRI picture.
Does anybody have similar case like my nephew ? I want to know how long it takes to see my nephew can recognize mom, dad and uncle and though MRI picture have not been changed , my nephew can wake up and see improvement?? I am worrying so much about when my nephew can open his eyes.
We are all very sorry that your family is having to deal with ADEM. As we have all found out, everyone's symptoms are different. My ADEM started in my cervical spine region and I did not have the severe brain symptoms like your nephew. What I can tell you is that his healing will probably be a slow process. I celebrated each day of improvement, each and every small step. I was diagnosed in May 1013 and I still have some symptoms in my hands, BUT know this....I'm doing well and OH so much better than I was in May 2013. ADEM is not a condition that is widely known about or researched. The best thing to do is search the internet and try to educate yourself. Here are 2 links I found helpful.
Everyone of this site has been through or are in the process of ADEM. If you have questions or simply need a shoulder for support, please let us know. What is your nephew's first name, so I can pray for all of you? Please keep us informed of his progress.
Hi Lynn,
My nephew name is Brian. He is still in sleep status since doctor said that Brian do not show improvement so it is not ready to extube. BTW, there are several doctor for neurologist but one doctor did MRI one more time on yesterday and he is saying that he will apply MRI on next Monday again. Do you know whether several MRI is okay for brian?
From what I know about ADEM, doing a repeat MRI is the best way to measure progress and recovery from ADEM. Multiple MRIs will help you compare the brain lesions from one week to the next. In general kids recover much better than adults so your nephew has age on his side. My son had plasma and not steroids and that seem to work within the first few days. Overall recovery can take over a year, which may seem like a long time, but the good news is that you can continue to get better from ADEM.
Please keep us posted on Brian, and let us know how we can support you.
Yoongil - I would not worry about the MRI with contrast. Trust your doctors. For my son in a follow-up MRI they needed to fully sedate him, and I would not be concerned if they needed to do that to your nephew. Please keep us posted on his progress. Ken
thanks for your warm advice. We trust doctors but sometimes we feel that they might take a mistake while my nephew were be trauma at neck during extube . I do not know why team were not ready to prevent unexpected situation like my nephew bite tue. In this moment i am praying for brian to be recovered soon. I will trust doctors. Thank you