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but he is going to be retested I am simply going to post the very long letter to the nuerologist that explains the going ons of the past week and a half. Sorry that it is so long.

Dear Dr. ***

My four year old son, Jacob , saw you last fall because he told us that he was seeing flashing lights. An EEG and blood test for Lyme disease were normal. Since then, he has not mentioned the lights.

Jacob has wanted to wait inside for the school bus over the past several days because he complained that the light hurts his eyes. He has had stomachache and loose bowels for a couple of days. He has been very tired and sleeping during the day and sleeping long hours at night. One night, for twelve hours.

Thursday at approximately 12:30 PM, Jacob sat on the rug at school and pulled his knees up to his chest and repeatedly squeezed them. He did not respond to people speaking to him except to say that he couldnít stop. His eyes were glassy and made a few quick movements every so often. He also blinked quite a bit. He stuck his tongue several times and appeared to be panting. I am not sure if this was part of what was happening or anxiety because he couldnít stop. I was called and he was still doing this when I got to his school, which is only a few doors up from our home. I was told that he was doing it for a few minutes before I got there and he continued for about three minutes after I got there. I pulled him into my lap and he was limp and wanted to go home because he was very tired. An ambulance was called and he was brought to the hospital. The EMT felt that he had had a seizure as did the ER doctor. He complained of his head hurting and has said that it hurt a few times since then. A CT scan was done along with a lot of blood work. On the ambulance and when we first got to the hospital, he had no fever. At about 3 oíclock I mentioned that he felt hot to me and they took his temperature again. He had a fever of 102.7. His blood work and CT scan were normal. We were discharged with a diagnosis of febrile seizure. I was always under the impression that the fever caused the seizure and question why he had no fever at the time of the seizure. His teacher mentioned that he was a little clumsy that day, when he typically isnít.

When we saw his pediatrician, Dr. ***, yesterday, he still had a headache, upset stomach, light sensitivity, had a little congestion, and was not acting himself. Dr. Murphy feels that it was triggered by a virus, and the rise in his temperature. Today, he seems mildly ill, is still a little tired, but playing. I have noticed that he is twitching a bit in his sleep. I donít know if he always does this and I am only noticing because I am being more aware.

Jacob does off and on complain that lights are too bright and the sun often bothers his eyes. He complains of his head hurting every so often. There have been occasions that he stares and does not respond for short periods of time. I always thought that he was just preoccupied, now I question it. Also, he sometimes tells me that he is cold when it doesnít seem that he should be. One of my big concerns is that the blood test done to screen for Lyme disease last fall had a false result. In researching Lyme disease, I have seen that it is not always easy to catch. I am concerned that he does have it and it was just not detected. Is there a more sensitive test? Is it ever diagnosed based on symptoms? The issues that I speak of started shortly after we pulled a deer tick off of him. I would also like to know if a CT scan and blood work would have determined if he had any type of meningitis or encephalitis?

On Friday, Dr. *** office said that they would be calling your office to make an appointment for me. I didnít hear back from them. I will call your office on Monday to see if there was an appointment made. I donít want to put him through a lot of testing if this was just a one time thing and not caused by anything but a virus, yet, I donít want to not treat something that might need treatment. I hope to see you soon. I wanted to give you the history beforehand and I am more thorough when I write it all down. Thank you so much for your time.

Sincerely, Jennifer
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I will add that my older son was sicker than he has ever been over the past week with a terrible virus. I feel that Jacob did have the virus but may have other symptoms because of Lyme disease.

He was tested about six weeks after the tick was pulled off of him. How often does a test come back negative six weeks after infection and be a false result?





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