ENCEPHALITIS CASES

Encephalitis Cases

Joseph

My son Joseph's illness started out with a fever of 103.5 he was 4 years old at the time. Joseph would not eat at all and only drink a little bit. After 2 days of this we took him to his pediatrician who said he has a virus, probably the flu. I was told to g ive him lots of liquids and rest. The next day Joseph could not stand without stumbling. I asked him if he could walk he said he was dizzy when he stood up, I called the pediatrician's office again, the nurse there spoke to me saying Joseph was probably dizzy because he hadn't eaten anything and I was to try to give him solids, like some toast or crackers. I tried that and early the next morning he vomited and fell trying to walk to the bathroom, I was so upset because this just didn't seem like an ordinary flu to me. I settled Joseph back to bed and he fell asleep.

Later that morning I came to ask how he was and he was speaking strangely, saying things like "Mommy what's that on your shirt" there was nothing on my shirt, and "Mommy why is the baby's coat on the couch", it wasn't. Then what really scared me was when he started to cry and say "Help I'm falling, catch me catch me!" He was lying on the couch! I said that's it, I called the pediatrician and waited for his call back, and waited and waited. After an hour I left and brought him to the Emergency room. They took him in right away when I explained his symptoms. They told me they would start an IV on him. I thought it was because he hadn't eaten, they put in an IV in his hand.

My husband and I went in to see him and he started to take a seizure, his right hand went up and stiff and his eyes went up. They started him on acyclovir in his IV and gave him ativan and Phenobarbital, his seizure stopped for a while then he took another one, I'm not sure of the exact time details because I was so upset. They took spinal fluid also for testing. They had to put a tube down his throat to help him breathe and told me that they were going to fly him to U Mass Memorial hospital, I was so upset! What could be going on with him? I asked the doctor at the ER he said maybe meningitis or encephalitis and that there had to be more tests done at University Of Mass. hospital.

My husband and I drove down there and Joseph was on a ventilator with a feeding tube in his nose to his stomach and also hooked to an EKG machine. An EEG was done and showed abnormalities which didn't go away with anti-seizure medicine. The doctor then ordered a MRI, which thankfully came back normal showing no abnormalities. The spinal fluid had showed some white blood cell activity. The doctors then felt he had viral encephalitis but from which strain of virus they didn't know. They tested for herpes encephalitis that came back negative as did most of the other. We are still waiting on the results of the cat-scratch disease. For the first four days of Joseph's hospital stay in ICU he would just lie there barely responding by blinking his eyes, he also slept a lot. He seemed in and out of consciousness. The doctor's said we had to wait and see how he would be when he woke up. Well when Joseph did wake up it was very strange. After he was breathing well enough on his own they took out the breathing tube. Joseph remembered me and my husband and his older brother but not his baby brother, he also hallucinated, seeing and smelling things which weren't there, he talked like a 2 year old even though he is 4 almost 5 this coming March. He tried pulling out his IV many times. He thought it was Christmas time (it was February) and asked to open his presents. I was so scared! What happened to my beautiful smart boy? When he did get up to walk he limped on his left side and his left hand shook. I thought Oh my God is this it?

Although I was so happy he was alive and eating again I was upset because this wasn't the same boy I know. Well to all of you other parents who are reading this, please do not lose hope because miraculously only after a week or so, Joseph came back to his old self again! Each day he remembered a little more, his mind came back up to a 4 year old, his limp is barely visible now. He plays as usual and does all the things he always did before he was ill. I feel it is a miracle at how ill my boy was to how well and QUICK he recovered, he still has to got to OT and PT for an evaluation which he will be going to next week. Although I wonder how long he will need it because he is doing so well. He was on Phenobarbital incase of any more seizures but had an allergic reaction so they took him off it and gave me some suppository medicine in case he has a seizure.

I see my beautiful bright boy back; he is just a little more hyper than he was. In time we will see if any behavior changes come from this but other than that it is truly a miracle! I thank God everyday for bringing my boy back to us. I know the doctor's were also surprised and pleased at how fast he recovered from being so ill. I am so grateful to the doctors and nurses and clergy at UMass memorial and all those who helped my son become well again!

Update: It has been 3 months since Joseph's illness and I though I'd give a follow up story. He has been having seizures, they are focal seizures, he seems to stare off to the left and is completely unresponsive. He has two different medicines to control them. He also has a short concentration span and is more hyper and does not behave as well as he used to. His appetite has also greatly increased and he has gained 12 pounds since his illness. He likes food that he never liked before and doesn't like ones that he used to. He is more aggressive and impulsive than before.

It seems with this illness that time only tells what changes are in store. However he is here, he is well considering what could have been, and for that I am so eternally grateful. Joseph starts kindergarten in the fall, and I am so excited for him! Thanks to all who have emailed me and wished Joseph well I appreciate it!
Sincerely,

Mom
Mass., U.S.A.

Posted: September 18, 2007

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