My daughter was diagnosed with ADEM in 2004. The doctors found lesions on the back part of her brain which caused hydrocephalus because her spinal fluid could not drain.
She had such intense headaches back then. She was only 7 years old. Local doctors could never find anything wrong with her for months. I finally just took her to the Emergency Room and there they found the fluid on her brain. We were rushed to the nearest children's hospital, Kosair's in Louisville. Dr. Puri diagnosed her with ADEM and cured her with high doses of IV Prednisone. He had only seen one other case of this in his practice and I feel we were blessed to have him. The medical neurologist wanted to place a shunt in her head to remove the fluid because she became lethargic. I remember Dr. Puri saying just give me 30 minutes. Of course, I was hysterical.
He said he had to turn off her immune system because it was attacking her brain. He thought it was due to her having a recent Strep Throat infection. He said ADEM occurs when your immune system tries to fight off a very bad viral or bacterial infection and attacks normal cells too because they may have the same tissue similarities. Within minutes, she came to and said that her head wasn't hurting anymore. Words I had longed to here for months!
She was in ICU for about 3 weeks and came home on lots of steroids. I had to crush pills and put them in pudding. She gained a lot of weight on the steroids and we slowly weaned her off of them. Follow up MRI's and CT's revealed abnormal shrinkage on the outer surfaces of her brain thought to be from the fluid that had been on her brain for so long. There were concerns that she might suffer cognitively. I am proud to say that she is a straight "A" student and know that God blessed me with a miracle.
I really want to help anyone that is suffering through this. I was so scared when she was so sick. I worry now because she recently got Strep Throat again, finished an antibiotic but is still having intense headaches. Last week I had her retested for that and Mono, both negative. I just got off the phone with the Neurologist on call at Kosair's. He ordered bed rest, no caffeine, and no pain medications over the weekend. If she is not better, we are going to do another CT or MRI. He said sometimes you can over medicate on over the counter pain medications or caffeine that can cause intense headaches and that it was highly unlikely that it was ADEM again. Praying this works. Blessings in Christ to you all.
I know the fear of relapse although I've been assured (!!) that it doesn't happen. My ADEM was brought on by Bronchitis, and I'm prone to it (2-3 times a year) so each time I get either a cough or a headache, I worry.
My doctor called over-the-counter medicine headaches a REBOUND headache. Too much of a "good" thing, I guess. Just be aware.
WOW! I just googled "trichotillomania" out of curiosity and my son has that too! Is that a coincidence? hmmmm..... my son is now 10 and had ADEM 8 months ago. I still shake every time he gets a sore throat or a headache. I think I will never be the same after this experience. He also developed diplopia but has gotten a lot better. I am very concerned about these headaches and the neurologist wants to do another MRI if it continues. I am terrified of something happening again.
Lien my son have ADEM on february 15, 2015 and now since then he is taking PRENDISALONE on a very low dose but he is having headaches, he is having his check up in july, what did your doctor tell you? at wich point is normal this headaches in kids that have ADEM?
Lien said:
WOW! I just googled "trichotillomania" out of curiosity and my son has that too! Is that a coincidence? hmmmm..... my son is now 10 and had ADEM 8 months ago. I still shake every time he gets a sore throat or a headache. I think I will never be the same after this experience. He also developed diplopia but has gotten a lot better. I am very concerned about these headaches and the neurologist wants to do another MRI if it continues. I am terrified of something happening again.
Sandra, According to the Dr he should be back to normal within six months after ADEM but the headaches are still happening. I have learned to identify the triggers and that way I can control it better. So far is when he doesn't eat, sleeps or drink enough water specially when active. He would get exausted and then get a headache for sure. The Dr says even a healthy person that does not eat or drink propperly will have the same symptoms so wee decided not to do the MRI and keep him well hydrated and rested he is also drinking vitamins.
I am so glad to hear you were able to find a doctor to relieve your daughters headaches and give you answers. I feel the same as you that you want to help anyone else suffering from this disease. It is very scary and as a parent you now jump and nerves are frazzled when someone who is sick comes around your child. You never want your child to get sick again because you don't want the ADEM to come on again. Many prayers for your daughter and your family.