Meningitis Support Group

My daughter had bactiral meningitis e-coli at 12 days old.

I was just diagnosed with viral meningitis about 1 week ago. I'm not sure how to continue with my life. Some people say that from now on I'm going to have to deal with debilitating headaches and some say that it should go away quickly. I'm very thankful that I didn't have bacterial meningitis. My prayer list....

1. No more headaches
2. Energy to stay awake for more than 3 hours
3. The ability to go outside and not freak out about getting sick
4. People to stop treating me like I have AIDS

I have had Aseptic Viral Meningtis twice in the last 10 years. I stayed in the hospital almost 2 weeks the first time (I did not know where I was for about a week. It seems once I have sterid injections for my back a few days later I get it. It apparent that they do not know much about this horrible it is. The last time I had it I stayed in the hospital for 4 days. Took 3 days for them to confirm it wasn't bacterial, so until then everyone had to wear masks etc. I have headaches everynow and then but not as bad as the first time.

I won't lie to you it will take time and lots of rest. There is a emtional side to it. (at least it was for me).

Take Care I hope you recover quickly!
hugs
Nan

devin, it will take time before you know what the ongoing effects will be. Alot of people do continue to have headaches. Sounds like you might need some medication for anxiety. Don't be afraid to try anti-anxiety or even anti-depressants.

My youngest daughter had pneumoccocal meningitis when she was 3 and half. Nine and half years ago. She is now 11 years old. Does your son have any lasting effects from the meningitis? Emily is on a vent while she is a sleep. She uses a walker, crutches, and wheelchair. She has never complained about headaches. But she can not handle loud noises. She central audiotary processing disorder and short term memory problems.

I have a close relative who contracted meningistis from the hospital he was born at. He survived and is well today. However the aftermath is complex at times. He does very well but suffers short term memory loss and other related issues. Its hard to speak about it to others as teachers etc just don't understand the after affects. Sometimes its a struggle to find people who understand.

It is extremely hard to try to get people in general to understand the disability. I use to get so tired of people saying "but he looks so normal". What does disablity look like?

My son had meningitis at age 3 1/2. he was treated for sinus infection for 12 days before he was truly diagnosed with some kind of bacterial meningitis. He already had oral antibiotics and the bacterial cultures would not grow. however, his viral panel was totally negative and they knew it had to be bacterial and not able to be tagged with which type. When he was 7, he was diagnosed with microcephaly and the doctors blamed all of his symptoms to the defect and not meningitis. I asked every year if it was from the meningitis and was told no. It was very frustrating this summer when we took Hunter to a specialist in Texas and he confirmed what I had been asking was true!! Doctors do not know everything and we have to keep relying on our own hearts to find the answers that we need. Hunter suffered sever frontal lobe damage from his meningitis and I thank GOD everyday for leading us to someone who gave us the answers. I get comments all the time that he looks normal too!! He does, he is very bright, but has the typical school issues from a traumatic brain injury. His teachers always wants him to be pushed into the normal classes and it is a fight every day and year to protect him. He does not do well in large groups, Since his nueromatirx nuerofeedback, he has become more like the loving child that he was BEFORE the meningitis. He does not take the 8 meds a day that he was on before the 3 weeks of treatments and I am thankful for not having to poison his little body from the chemicals in the meds. I pray for all that are going through post-meningitis syndrome. It is not easy and the side effects are forced to be overlooked way too many times. Hunter does not have as many headaches since his brain stimulation. I pray for you all and I pray that your little one does not have as many side effects that my son has had.