I dubbed my screen name Mama Bear because I'm a staunch advocate for my children (as most mothers are!)- and leading me to this site will further empower me to be their voice regarding medical concerns (and everything else of course...)
My son Wesley (just turned 2 in March) had the norovirus back in January- then he had a cold that wouldn't quit... along with ear infections that 4 rounds of different antibiotics couldn't touch... and then I started to notice him doing something very bizarre with his eyes... they were doing a weird rolling thing and then he also started having staring spells. He'd be in the middle of playing and all of a sudden be completely spacing out... i'd clap, touch his face, call his name and it'd be like 5 seconds before he'd "come to". he had upwards of 20 of those episodes with increasing eye rolls in a 2 hr period and I brought him to the ER. They said they were likely just little seizures, drew his blood and sent us on our way. They told me not to be worried in the least.
I continued to worry and watch him... I brought him to his pediatrician and he saw the rolls and the stares and called his friend (thank god for their friendship!!!) Dr. James Filiano at Children's Hospital at Dartmouth- and asked for an EEG. We went and did it- it was normal. We did a 24 hr EEG. Results were normal... so these "seizures" everyone thought he was having weren't seizures... we did lots of blood draws, urine sample testing, and finally an MRI- which revealled the lukodystrophy on his brain- the white spots. Immediately he was treated with the prednisolone and an antibiotic and within a couple of days the eye rolls and staring spells decreased and disappeared.
We are doing one more series of tests because his alkalinity in his blood is elevated, and has been all along- they're trying to narrow down what would cause this. The doctor has praised me repeatedly for being on top of things- stating that he could have suffered permanent brain damage- disability- mental retardation- vegetative state etc. if I hadn't stayed on top of this and was aware of something just not being right. I'm truly grateful for all the care we're getting and for how fast they've moved this along. Here's hoping we get some answers. For now- it's really incredible to find this group because so many people in my life thought I was just "putting him through" a lot all for nothing- including my in-laws who were very vocal about it.
As a caregiver , and especially the mother of a child that cannot speak for himself, you have to be vocal, demanding, and whatever else is needed. Don't be put off by what friends or relatives are saying to you. You are the person that knows your child the most, and if your gut is telling you something is wrong then something is wrong, and no amount of tests or doctor visits is going overboard. As you can see, ADEM has been very life-altering for most of the people in this group and if they hadn't gotten help when they did the damage could have been much worse. The plus side for your son is that being so young his brain is still developing and hopefully can overcome some of the effects of this damaging illness. I have found it helpful to have some of our close family members read some of the discussions in this forum to understand what is happening. Good luck, and keep being a ferocious mama bear. Sylvia
hello, i want to ask you because your children as my son, he is 2 years and half . i dont know ,but he he is suffering mentally very much after adem since 6 months . he can't think right or understand us easily. crying a lot ,talking to himself and repeating the words.forget easily. the doctors said that the adem mentally affected him. does anyone go through this before in his child and is there any medicine will help him in this case thanks
Enas- my son has been receiving speech language therapy as well as occupational therapy and that has helped him tremendously! I’m sorry to hear your son is having such a difficult recovery. Are you working with a pediatric neurologist?
thank you mama bear for your reply.yes Iam working with a neurologist .but after the regular steps from iv and cortisone,he didn't recommend a therapy for my son. he insists to put him under nootropics which we afraid of its side effects on him .that is why i am looking for another treatment for him . may be therapy will help him . but did they give any medicine to improve the brain cells .