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| Kate |
My daughter Kate had viral encephalitis from a mosquito bite, when she was 4 years old, in September 1986. The testing didn't show what the problem was but the doctor said that they did show an encephalitic pattern. I think they were right. She was only unconscious for two days but was in the hospital for three weeks as she had a reaction to one of the three anti-seizure drugs they had her on. She was sent home with no medications. She had an aura type seizure the day after she got home. She was taken to a different doctor because of the HMO we were on at the time and the doctor put her on medication.
The following year I insisted that we be allowed to take her back to a pediatric neurologist who said that it was the wrong medication for that type of seizure and took her off of it. We were very pleased because she brightened up a great deal and her eyes didn't have the drugged look once she was off the medication. She didn't have another seizure for eleven years. The doctors never were sure what caused the seizure in 1997 but think it might have been due to the anti depressant that she was on. Whatever the cause, she hasn't had another since then and is on no medication for it. We think that the seizure in 97 was a blessing because she had a CT and due to that found out that she had a thyroid condition.
The doctors said she was "perfectly normal" and that we were lucky and should go home and get back to our normal lives. It took a long time and a lot of research on the Internet to realize that they were wrong. Had I known and recognized the problems she was having as being from the encephalitis and the anti-seizure meds I might have been able to get her the right kind of help at a time that it might have made a difference. She has a low normal IQ, which we think is due to the encephalitis. She was only 4 when she got sick and naturally we had not had any testing done. She was slow to walk and talk but was within the normal range.
Before she left the hospital she had relearned to use the potty and was walking and talking normally. She no longer thought before she acted. She would hit her baby sister where was before she would not have hit anyone. She is 25 now and the doctors say that the damage she had was to the part of her brain that controls reason. She gets mad at someone and won't forgive them ever she doesn't temper her reactions with reason. She also gets lost easily. She had been in the same school for 4 years and still couldn't tell someone how to get home from her school. If we were in the store and she went to a different part of the store she would get lost and not be able to find us. This has gotten some better over the last couple of years. She has a really hard time with math and counting money. Following instructions isn't easy if there is a list of things to do. On the other hand she is very loyal and loving. She can spell and read well. She loves to read and she watches a lot of movies. Comprehension of the books and movies isn't what it would be for a normal adult but she does get most of what is going on. Her heath is bad. She has weakness on her left side and when she gets a muscle injury it doesn't seem to heal like it would on most people. I have to wonder if this isn't in part due to the brain damage changing her perception of pain or something. Mostly the doctors don't think much about the pain as a problem. They say it is all in her head and that she just doesn't have enough going on in her life. Well, she doesn't have enough in her life but when you hurt all the time or feel bad it is hard to want to get out and deal with the world in general, the doctors don't seem to understand that.
She was in junior high school before we were able to get her in special education classes. Till then they said that she was just not applying herself and we sure pushed her at home. Memorizing things was a big problem. She doesn't have the memory required for that. We worked on the times tables and she would have them down pat that night but the next morning she wouldn't remember any of it. She also had problems memorizing poems and dates and the rest of it. Once she was in special education it helped a lot. By the time she was in high school she tested 3rd grade in math but 12th in reading. The only way I got the schools to recognize her problems was that I found a web sight from England that talked about the problems of post encephalitis and even told teachers some about how to deal with the problems. I printed the information and took it to her school; I also gave a copy to her doctor. She had a great doctor at that time that was glad to get the information. It was a true gift from God to have that information. I've looked for the sight recently and have been unable to find it again. Due to her health problems she missed so much school that less than 6 weeks from high school graduation the school kicked her out for lack of attendance and doctor's notes didn't help. That was a major blow to her because she had worked so long and hard to get the degree. She could have gone back to school at a different school but the change would have been so hard for her that it wasn't an option.
We were able to get her on Social Security disability. She doesn't drive, as she doesn't have the ability to keep up with the number of things that you have to while you are driving. I'm also worried she would get lost too easily. She has changed doctors due to her age and the new doctor understands about the mental disability but seems to think that the physical problems are just due to lack of effort on Kate's part.
There is so much that medical science doesn't know that I've learned to research and keep going to doctors till I find a doctor that has a solution. Sometimes that isn't easy. You will have times that you think you are crazy and other times you give up. We all need a break now and then. The key is to do your own research and keep asking questions and going from doctor to doctor. Caregivers know their loved ones better and care more about them than most doctors do. We are their best advocates.
As bad as Kate's problems are they could have been much worse. We are very lucky to still have her around; she brings joy to our lives. Good luck with your situation and feel free to e-mail me.
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Virginia Allen
Texas, U.S.A.
Updated February 3, 2008 |
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