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

Hi Trent Glad to see you made it over here.

There are a great group of very helpful and knowledgable members here on NeuroTalk's Epilepsy & Seizure Disorders Forum.

I dont know much about this as my own son, as you may have read on the other forum, has Tourette Syndrome. But I do recall, in the early days after his diagnosis, that an Occupational Therapist working at the school had noted he had "seizures" during a therapy session for his Sensory Integration Dysfunction, and I had to ensure that his chart was corrected after I had spoken with her. Sge did not recognise TS tics as she had not worked with a TS patient before. So she just wrote down "seizures"
I therefore know how people who dont understand tics can sometimes mistake them for seizure activity.

Still, you are getting this mixed set of diagnostic messages from professional doctors, and so I really personally feel that second third and even more qualified opinions, after careful testing and evaluations, are needed.

Have you ever seen a developmental pediatrician. the one we saw was the first doc in a string who correctly diagnosed the TS/OCD/ADD (no Hyperactivity) etc that my son has

We had the same experience getting the dx for his Crohn's disease in the early days ..........a lot of misdx till a savvy GI specialist got the colonoscopy results and dx Crohn's

so dont give up hope for clarity...I know it is hard....but you will hopefully find a clued up Doc, or (blessing!) one that is willing to go do research or consult with others and help!!

I hope to see you here and at Latitudes too if needed



Cheri

Hi Trent,
I've had both absence (petit mal) and complex partial sz. for 35 yrs. Take note if you see your son smacking his lips, maybe wandering around, or picking at his clothes this is all part of a complex partial sz.
It has been proven that ADHD and tics can cause sz. for some people. I've seen many different neuros. over the yrs. but I got the best help from an Epileptologist (epi) Dr. who specializes in epilepsy. If you go to a university hospital that has an Epilepsy Center your son will be much better off and the Drs. are way ahead of any neuros. I've ever seen.
Make sure you keep a calendar writing down what time of day/night your son has any sz. along with a description of the sz. by doing this the Dr. will be able to often see a pattern as to what days of the month and what time of the day/night your son is more likely to have any sz.
Also keep your son away from anything with nutra sweet in it (ex.diet soda) it's been proven that nutra sweet (aspartame) causes more electrical activity in the brain which can cause sz. for some people. Take note of the weather also some people have more sz. when there's a low pressure. I found out that I was photosensitive that's where certain bright colors can trigger sz. My epi did a special e.e.g. on me flashing different color strobe lights one at a time and found out 3 colors triggered szs. for me.
You might want to try putting your son on vitamin B12 it has done wonders for me calming the nerves down and reducing my sz.
If you're interested here's a couple of websites to check out for more info.
www.epilepsy.com

http://www.neuropat.dote.hu/neurology.htm
(When the main page comes up click on epilepsy)

Here's wishing you and your family only the best. May God Bless All of You!

Sue