July 2009-
My husband and I tried for over a year to conceive a baby. We had not gotten married until our mid-thirties. And we had waited a year to start trying because my husband wanted to be married for a while before adding a child to the mix. But time was against us. So we visited a doctor. David was fine, but my progesterone levels were low, and a dye test revealed that one fallopian tube was blocked by either scarring or a cyst, cutting our decreasing chances due to age by another 50%.

So we visited a fertility specialist, increasing our dose of clomid and trying artificial insemination. Thankfully this worked on the first try, and Jimmie was on his way.

The pregnancy remained uneventful. In fact I was healthier pregnant than not. But at the end, (Jimmie was due on 7/3, and the date was 6/22), I was undergoing testing which revealed a drastic and dangerous decrease in the amniotic fluid. I was induced, but Jimmie was stubborn. He was down but facing up and refused to turn or enter the birth canal.

He was born, healthy and beautiful, on 6/23/06 via emergency c-section at 12:11 pm. His apgar scores were near perfect. He did develop a little jaundice but nothing to worry about. But either he didn’t suckle properly, or, more likely, I did not produce enough milk to support him. Jimmie experienced some failure to thrive during the first 2 months of his life. He only gained a single pound during those first two months.

His pediatrician suggested we switch to formula. Within 2 weeks Jimmie had gained 2 pounds and was on his way back to health.

But at 4 1/2 months of age, I began to notice a frightening behavior. Jimmie would jerk, and at the same time his eyes would roll up and to the right, seeming to flash as if rebooting, at the same time. It was quick. It took me a week to convince anyone I was seeing something abnormal. I finally made my husband stand and watch during bathtime…a time I had noticed the behavior repeatedly. His response was, “Well…that’s not nothing.” We video taped it and took Jimmie to the pediatrician the next morning. He referred us immediately to a pediatric neurologist at Children’s Memorial in Chicago and ordered an EEG. We made the EEG appointment, but before we could even make it to the appointment we received a call from the neurologist stating she wanted to see us immediately and would do the EEG herself.

It was the Tuesday before Thanksgiving 2006. She came into the office after the EEG and told us that she had some bad news for us. Jimmie’s EEG was extremely abnormal, a pattern called hypsarrythmia. Jimmie had a form of infantile epilepsy called Infantile Spasms, which was not as innocent as it sounded. It could be associated with any number of serious medical issues. She sent us home, but only because of the impending holiday. We were to return to the hospital on Monday morning to udergo a barrage of testing and start ACTH. She sent us home with a prescription of topamax and B6 in the meantime. And the seizures stopped. We went to the hospital as instructed, but upon admission advised that the drug and B6 were working. They postponed the testing to do another sleep deprived EEG the next morning. The EEG was still abnormal, but they hypsarrythmia was gone. We were sent home with the belief that Jimmie had a B6 defiancy, but the seizures returned within a week. On 12/14 we went back for a followup. The EEG showed that, not only the seizures, but, also, the hypsarrythmia had returned. We were admitted immediately to the hospital. All the tests were negative, but there was no question that Jimmie had Infantile Spasms. The B6 IV push showed no improvement on the EEG, so B6 defiancy was eliminated as a cause.

Over the next several months we tried several drugs, including 2 1/2 rounds of ACTH. Jimmie ballooned up. The seizures increased. He began showing some signs of developmental delay. I contacted Child and Family Connections, an organization run by Human Services and responsible for Early Intervention. Jimmie was found eligible and entered physical therapy and developmental therapy in January 07.

Eventually, we exhausted all the drugs his pediatric neurologist was willing to try. She referred us to an epileptologist in the practice with the thoughts that perhaps we could try a drug not approved for use in the US (vigabatrin). This, however, was not recommended by the epileptologist. We tried a few more drugs. Still no improvement.

At 20 months, Jimmie’s diagnosis was revised from Infantile Spasms to Lennox Gestaut Syndrome. He was still not walking or talking. And now his prognosis was even more grim. His seizures progressed from myoclonic and atonic to include tonic seizures.

We tried another drug, zonegran. The seizures continued, but Jimmie was beginning to advance developmentally. Over Christmas 08 he began to walk. Then on January 5, 2009 he had his last seizure. The break lasted 4 months. The timing was God-given. On January 13, 2009, another miracle entered our lives. Jimmie’s baby brother Charlie was born, conceived without artificial insemination, on the first try.

Though Jimmie’s seizures have returned, thus far he has experienced only myoclonic and atonic seizures, and the photosensitive atonics have not returned. At their worst, we could not turn a light on in the room with Jimmie without his seizing. This trigger was the hardest to control. None of the drugs had ever done anything to improve that situation, until zonegran, which has eliminated it.

Jimmie can now walk, though with a great deal of ataxia. He remains hypotonic, requiring smo’s. He still does not have any real language, though he does have a few words now.