This is the story of my wonderful 4 year old son Brady.

Outside of the below discussed conditions, he is a normal boy with the typical childhood issues. (Except for his eardrum ruptured once due to a sever infection several years ago.)

I am confused, depressed and deeply saddened by what is going on with him. Can you offer any suggestions? Can all of his conditions be related? Will he get better, worse?



(June 2003)

At birth (June 2003) he was diagnosed with a heart arrhythmia but has had no complications from it.

Shortly after birth, Brady was diagnosed with Colic.



(May 2006)

Brady had his first seizure. One week later, he had 4 more at which time he was diagnosed with Epilepsy by a neurologist at Children’s Hospital. (We stayed at the hospital for 3 days for evaluation.) His type of seizures were diagnosed as Partial Complex Seizures. He was placed on Keppra (anti seizure medication). To the best of my knowledge, nothing abnormal has been detected by EEG.



After returning home from the hospital, we saw only one more seizure. The medication seemed to be working. This seizure seemed shorter, so we assumed the medication was “kicking in”.



We seemed to go for a long time without seeing any seizures. Then, we started seeing “something” again. The “something” that we were seeing seemed to be like the seizures he originally had…but much milder and only lasting 1 or 2 seconds. Upon the advise of the neurologist, the medication was increased and we followed-up with a visit to his neurologist.



At this point, we were under the impression that he was having “break-through” seizures. Again, they resembled the original seizures (which would last approx 30 seconds to one minute), but were only lasting 1 or 2 seconds. During these what I will refer to as “spells”, Brady will shrug his shoulders forward and upward, make a frowning expression, and his eyes seem to look upward. This happens so fast, its hard to catch it.



**At some point during a visit, his neurologist said that he was not totally convinced that what we were seeing were seizures. He thought maybe they were something else.



Over the past year (since onset of first seizures) we have gone for days, weeks, and even a month or longer with no signs of the “seizures / spells”. Other times, he would have multiple “spells” per day. Sometimes he has them almost daily for a number of days.



We visited a Pediatric ENT to see if there was a possible connection between epilepsy and sinus infections. The ENT suggested that there was no link.



(May 2007)

Around May of this year, we decided to visit another neurologist just to get a second opinion. Upon our initial visit with her, we gave her all of the background information we could as well as the medical records from the previous neurologist. She also examined Brady.

**She told us that she thought that what we seeing were “tics” and not seizures. (The previous neurologist had also said that he was not convinced that he was still having seizures.)



She decided to do blood work to see if the medicine levels could be safely increased. The blood work showed that the medicine level was at a low level, so we increased the dose. (She did this in order to see if the medicine was making a difference.) The dose increase didn’t seem to make a difference, thus we returned it to the previous levels.



She also wanted us to try to capture his “spells” on video. This was going to be extremely difficult as we never know if/when it would happen. As he was lying in bed one night, I noticed him having his “spells”. (I never noticed this until then.) I taped him four nights in a row as he was falling to sleep. I noticed that his “spells” would begin right before or just as he was falling asleep. His “spells” happened during the first 15 to 20 minutes of falling asleep. Sometimes more noticeable that others.



(July 2007)

Our most recent visit to our neurologist.

The neurologist actually saw one of his “spells” during this visit !!!! She said that it was her opinion that these were “tics” and not seizures.

The neurologist reviewed the tape of Brady falling asleep and having “spells”. She concluded that the “spells” he is having at falling asleep are not the same as what he is doing during the day. (“tics”) She says that what he is doing at night is probably what a lot of people do “jerk” as they are falling asleep. (This seems coincidental to me since the “spells” seem so similar.)



During this visit, the neurologist also may a comment about Brady being “active”. Thus leading into a conversation about ADHD. So now we (the parents) are scared that he also has ADHD which can open a whole new group of challenges.



So based on this most recent visit, we are lead to believe Brady has the following conditions:

1.Epilepsy - Initially 6 seizures over a 2-3 week time period, then...based on new diagnosis....not really sure if mild seizures or tics are what he has been having.
2.Tics - After being put on Keppra for the initial 6 seizures, he still had what we originally thought were mild seizures,,,but now are being told that these are "Tics". Thus for about a year now, what we thought were seizures may have been tics ????!!!!! (Physical appearance of the "tics" closely resemble the below description of the "Spells" at falling to sleep.
3.“Spells” at falling asleep. (Shoulder shrug, Facial expressions which resembles a frown, Sometimes his eyes open.) Sometimes mild and sometimes more pronounced.
4.And now possibly “ADHD”. (This is based only on 2 comments....1 from his neurologist & 1 from a church worker who has experience with ADD/ADHD. Both comments were based on his "Activeness".)

His seizures were mild -- not the jerking type.
His tics are motor -- no vocal.

I’m sure I have not included every bit of information, but this is an overview of where we are now.



At this point we are confused, depressed and deeply saddened. Can you offer any input based on the information I have provided? Can all of his conditions be related? Will he get better, worse? Will this turn into TS? Any chance that the seizure were really tics? I am having a difficult time believing that this is not all related.



Thanks,



Trent Brown