An Infant's Struggle with Tardive Dyskinesia

San Bernardino, CAReglan side effects, specifically, Reglan tardive dyskinesia, would be difficult for any adult to take. So imagine how it must be for an infant, who cannot talk about what he is going through, who can only live through it day after day. Nickolas S. endured many stays in hospital before a doctor discovered that his problems might be linked to Reglan and tardive dyskinesia. Nickolas is not yet 3 years old.

"Nickolas was born prematurely and had gastro reflux," says Lisa, mother of Nickolas. "He was diagnosed at 10 months and was started on Reglan therapy right away. He was given a G-tube [a gastrostomy feeding tube] at about a year old. Nickolas had a failure to thrive. He was on the Reglan for 23 months and during this time he was hospitalized a lot. I would say 12 times or more.

Doctors thought he had seizure disorder. He would drop his head, his tongue would stick out, his hands would seize up and his eyes would blink uncontrollably. They thought he had a cardiac problem and then he was diagnosed with partial drop seizures.

Nickolas had a video EEG done, and that showed he was having 80 to 100 of those episodes per day. It was so bad that he had to wear a safety helmet. He would just fall down, he cried all the time, he was irritable and sometimes, he would just lie in bed because he was so irritable. It was really bad.

He was taken off the Reglan 2 months ago and is getting much better. He has 5 to 10 of those episodes a day and he still has the spasms. He is still fatigued after the episodes but he is getting better.

I have a progress note from the doctor that says Nickolas was on Reglan and he may have tardive dyskinesia that is possibly due to the Reglan because he was on it for such a long time. However, she has not followed up and said, 'This is specifically what caused it.'

He would vomit uncontrollably so he was admitted to the hospital for dehydration. Doctors ruled out everything except tardive dyskinesia as a diagnosis.

It was about 2 to 3 months after he started the Reglan [that Lisa noticed the problems]. The eye blinking and the head tilting were first. Then came the tongue protrusions. It looked like he was having full blown seizures toward the end of the episodes and it happened every day. But it did not happen when he was asleep. He would wake up at 5:00 AM every morning with an episode and those episodes would continue throughout the day.

He was constantly falling and had these involuntary movements. He would be sitting somewhere and then fall over and his hands would move out of nowhere and his eyes would blink uncontrollably. I had bags packed by the front door because I didn't know when I would have to call an ambulance for him..

Now, he is down to 5 to 10 episodes a day and those episodes are not as bad. He does not have to wear a helmet all the time, anymore. His tongue still sticks out but his eyes are not blinking the way they were. It's a miracle. There are still times where he is fatigued after an episode, but before he was always in my arms because he was so irritable. He cried over everything.

It's been a rough few years, very hard. I would hate to have anyone else go through this. Fighting an HMO is so hard and I would tell people to push as hard as you can. I've called about a billion people to get Nickolas the care that he's needed. I would do anything to get him better. I'm not going to stop looking for answers."

Nickolas has brain damage that doctors believe is related to the quality of medical care he received during the first year of his life. What affect the tardive dyskinesia will have on his future, Lisa does not know. She says a neurologist will examine him when he turns 3 to see if any further brain damage has been done. Meanwhile, Lisa is happy that her son appears to be getting better, at least as far as the tardive dyskinesia is concerned.