When my son Daniel was 22 months old, he became very sick one day with severe flu-like symptoms. After the second day of vomiting he had a seizure and we rushed him to the hospital where he was admitted for two days. The diagnosis on his chart said unresponsive and dehydrated. The doctor suspected meningitis, but did not test the spinal fluid. She wanted to wait to see if his condition improved after a few hours of fluids.
When it did, it was suspected that he had a severe stomach virus and he was discharged. For the following week, Daniel did not move off the couch, but only cried constantly and held his head as if it hurt. He also was having trouble walking.
Every month thereafter for the next fourteen months, the same scenario has occurred for Daniel, except that the symptoms were not as severe.
One day each month he had seizures all day (many days vomiting accompanied the seizures) and then for the next 5-7 days would be very lethargic.
Daniel's pediatrician felt that I really was not seeing seizures at all and frequently would say that he probably had low blood sugar because he had missed a meal due to the vomiting. She would scold me and tell me to get some protein into him and then he would get better.
Because the seizures only lasted for a day each time, it seemed that her advice was correct. After about six months, I noticed this pattern of monthly seizures and asked to be referred to a specialist. She was not sure who to send him to and never returned my calls, so I changed to a new primary care physician who then referred me to a pediatric neurologist.
This took an additional three months of waiting. The neurologist ran all kinds of tests, including an EEG, MRI, various blood and urine tests and came up empty-handed. She dismissed him from her care. At this point it had been 14 months; Daniel had seen three doctors, and had a whole new list of symptoms in addition to the monthly seizures which included:
Daniel K's Story
Sensitivity to the sunlight
Complaining that his eyes hurt
Severe behavioral problems
Walking problems (Daniel walks on his toes)
Sandpapery rash on upper arms and legs
Seizures which used to be every 4-6 weeks were now every 3 weeks to the day
Because Daniel's behavior was so bad, my husband and I have been criticized by many of our friends and acquaintences. They feel that we are just not disciplining correctly. But what they don't understand is that Daniel frequently acts like he is demon-possessed or like an animal, almost as though he cannot help it. Some weeks he acts like this and some weeks he doesn't.
The behavior goes in cycles, much like the seizures. For months, Daniel could not even be in his church classroom with other children because the workers were so frustrated with him.
Just imagine the emotional state of the parents who can't get a break at all because there is no one to handle him.
Finally, after 14 months of Daniel's strange illnesses a friend asked if Daniel had ever been tested for Lyme because his symptoms were similar to their neighbor who had Lyme. I inquired of another friend what the symptoms of Lyme were in children and every symptom was my Daniel to a tee. I was referred to Dr. Bach in Colmar, PA, by my friend's neighbor and he saw Daniel the very next day.
That was in July of 1999. He tested positive for both Lyme and Babesiosis (another tickborne disease). He began treatment 5 weeks ago and we are hopeful that now that we know what is wrong with Daniel we can begin to help him. Dr. Bach specializes only in Lyme disease and is hopeful that within the next year we will begin to see many improvements in his health. The seizures are lessening in their severity and we hope they will be gone soon.
He has a long road ahead of him. He is just turning 3 this week, so we are hopeful that his young age will be a plus as he is treated medically and also begins to attend a special school for therapy and help with learning problems. I will update this story in the months to follow.
With sympathy for those with Lyme or family members with Lyme,
Sharon (for my son Daniel)
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