Watching the Dancing Ceiling

[Earth Mother 2 Angels]

Hi ~

Generally, I post on Child Neurology, but I would appreciate any insight and input from you all regarding my son's recent possible seizure activity.

HISTORY:

Jon's seizures have always been tonic/clonic (ye ol' gran mal) and life-threatening.

Most of his seizures have occurred during peak hormonal ages: 2, 13, 18, 26. He's 42, so he's in that hormonal change zone.

He also seized in response to Reglan, given in the hospital. And, while hospitalized, he seized from sub-therapeutic levels of his seizure meds (Depakote & Dilantin) caused by interactions with two antibiotics.

He seized at home for the first time in 15 years on New Year's Eve 2011, which we stopped with 1 mg Ativan under his tongue. That was the result of sleep deprivation/insomnia and possibly Dilantin interaction with Bactrim for his UTI.

CURRENT ISSUE:

This past week, Jon has had episodes of looking up at the ceiling, his neck slightly arched, as if he's watching something up there. He doesn't have a fixated stare. His eyes move (not nystagmus) as though he is looking at something, and he moves his head occasionally from side to side.

His arms are relaxed, no clenched fist, and he responds to me when I put his hankie in his hand. When I try to pull it out, Jon grabs the hankie.

I'm not sure if he is aware that I am there, but I'm talking to him and asking him what he's looking at and begging him to look at me. He just keeps looking at the ceiling. All around the ceiling, not just one spot.

His pupils are normal. Not pinpoint. Not dilated.

His respirations (number of breaths per minute) are normal. We have a pulse oximeter measuring oxygen saturation (SATS) and heart rate. His SATS have been low recently due to fluid retention and excessive secretions (we have to suction quite frequently through his trache to keep the SATS in the upper 90's). But while he's wandering off "watching the dancing ceiling," his SATS and heart rate are normal.

Duration this evening for this event was about 30 minutes. He was watching the ceiling, when I entered his room, so I'm estimating.

Then, he suddenly is back. He looked at me, smiled at me, and handed me his DVD cover, telling me, "No. New movie." Saying this is very normal and typical for Jon. He acted like nothing had happened.

MEDS:

Jon is toxic on his Dilantin, and we're in the process of reducing his dose. His home health nurse will be drawing blood for levels this weekend. His therapeutic range is 11-13, and his last level was 19.

When he retains fluid (and hasn't been having regular bowel movements), Dilantin really builds up fast in his system. Now he is releasing the fluid (he has an indwelling catheter), and M.O.M. has helped his bowels.

Jon also takes 45 mg Phenobarbitol (15 mg a.m. and 30 mg p.m.) just because I'm afraid of taking him off of it. He's been on it since he was 2 years old.

NEURO:

We don't have one. None of the neuros in our area accept Medicaid patients as out patients. They will see Jon in the hospital, but not outside of it. They also aren't terribly fond of me, because I refuse to just shovel more drugs down Jon's throat, when his seizures have been controlled on these drugs for 15 years.

QUESTIONS:

1. Is "watching the dancing ceiling" a seizure?

2. If so, which type?

3. If you've experienced this kind of seizure, would you be able to explain to me what it is like for you, so that I can better understand what's happening to Jon?

4. Are there specific AED's for this type of seizure?

5. Can this progress to a tonic/clonic?

Thank you for your opinions and insight. As I said, this is very new for Jon. My youngest son, Michael, had an assortment of seizure types, but his were primarily tonic/clonic. So, I'm out of my realm with these episodes.

Blessings to all ~

Love & Light,

Rose

[Donna Thomson]

Hi again Rose, Oh I am so sorry that Jon, you and Jim are having such a terrible time. Nick has a variety of seizure types (we added another new one last week with the complex partial during waking hours), but your description of Jon's staring at the ceiling without movement in his limbs sounds like visual hallucinations maybe? I'm going to google hallucinations now to see if there is any info that jibes with Jon's various conditions...

[Donna Thomson]

Hi again, I just found this: Only registered and activated users can see links., Click Here To Register... Could this possibly be what is happening?

[Porkette]

Hi Rose,

What you are describing sounds like your son may be having a possilbe complex partial sz. or a long absence (petit mal) sz. I've had both of these sz. for over 30 yrs. When I have a complex partial sz. I will start
to see colors of the rainbow flash back and forth in my eyes and I'm still conscious then I get a nervous feeling in my stomach like butterflies, after that happens I blank out and start to wander around the house sometimes
or I will just stay in one location. After about 2 min. (at the longest) I will continue talking and working around the house but I just don't remember anything. Then the sz. is over with and I continue
on but often I am puzzled as to how I got into another location before the sz. started.

When I have an absence (petit mal) sz. I will just have a daydream look on my face and continue working and talking to others but I'm unconscious and I don't even realize what I'm doing during the sz. after the
sz. is over I feel fine and just go about things as usual.

Take my word going through hormonal change can cause a lot of sz. I remember when I was going through that time in my life that 's when I had the most sz. The hormones changing in a persons body causes a lot
of chemical changes which in turn triggers sz. One thing that worked really good for me and you might want to give it to your son is vitamin B12 this vitamin calms the nervous system down. Your son should take 500 mcg.
once a day of vitamin B12. Another thing that can help him is the ketogenic diet which is a diet for epilepsy. He will have to cut back on the carbs. and starch foods and start eating foods high in fat. This in turn builds ketones
up in a persons system helping to reduce or stop the sz. Your son won't gain any weight on the diet either because he will burn the fat off for energy instead of using the carbs. If you are interested in this you should see a local
dietician in your area and you can get the book written by Dr. John Freeman from Hopkins University title: "The Epilepsy Diet Treatment" The diet has been out since 1927 and I saw it work on my cousin who flew airplanes during
World War II and he never had a single sz. while he was on the diet. Also your son won't have to take as many AED's while on the diet. If you do need to find the right AED's for your son ask the neuro to do a DNA test on your son
this will show what AED's will work the best for him with the least side effects.
I have been told that complex partial sz. are one of the hardest type of sz. to control because it can effect both sides of the brain. I know since I was put on vimpat last yr. I have had very few complex partial sz. I also take mysoline, and diamox.
If your son uses a cell phone a lot or is around people that use cell phones often he may be cell phone sensitive which means the frequency that the cell phone is using is triggering sz. for him. I found out I was cell phonesensitive last yr. when I
saw a pattern in my sz. and they were happening when I was in the grocery store and many people were using cell phones at the same time. Each time it triggered sz. for me.

I wish you and your son only the best and May God Bless Both of You!

Sue

[howdydave]

Sounds like a complex partial to me.

If he was aware of his surroundings and responsive, then I would say that it might be a simple partial.

[Donna Thomson]

Rose, how is Jon? Thinking of you...

[Earth Mother 2 Angels]

Thank You!

((((((Donna, Sue & Dave))))))

Thank you so much for your insight and suggestions.

I checked your link on hallucinations, Donna, and it did seem somewhat appropriate to Jon's episodes, but not completely.

Sue, your descriptions of your seizures are so helpful. Jon's "episodes" last 20-30 minutes. He seems to be aware of some things, like when I tug on the hanky in his hand, and he grabs it and pulls it back. An absence seizure seems to be the most likely of the choices of seizure types.

Jon is fed by Gtube with a formula, so he does receive all of his vitamins including B-12. The Ketogenic diet would not work for Jon, because he has motility problems, and he cannot tolerate dairy, because it causes congestion for him.

Jon is in bed most of the time, and he isn't around cell phones. However, he is surrounded by machinery, not all of which is plugged in. Electric bed, electric mattress, suctioning machine, O2 concentrator, nebulizer, and of course, his TV and stereo. We also use a battery-operated pulse oximeter on his finger many times daily to check his SATS and heart rate. I'm sure that all of this stuff isn't healthy for him, but there isn't much that I can do to mitigate it, as he needs all of that equipment to be close to him.

Dave, it's difficult to discern whether Jon is aware of his surroundings, but I would say he's somewhat responsive in that he responds to me tugging on his hanky. He doesn't blink much, even when we're in his face, snapping our fingers to get his attention. It's almost as if Jon is in a trance.

On Saturday, Jon's home health nurse changed Jon's catheter and drew blood. The blood test results give us an answer for what has been happening with Jon.

Jon's Depakote level is too low, and his Dilantin level is toxic. As I suspected and predicted, which is why we are adjusting doses.

We are hopeful and prayerful that these adjustments will be the key to resolving Jon's assorted issues, including fluid retention and constipation (likely a contributory factor to these results).

Thank you all again for your responses. As always, I learned a lot!

Love & Light,

Rose

[Donna Thomson]

Thank goodness you have a signpost, if not an answer! I will hope and pray that the meds adjustments will help Jon get rid of these seizures. Thank you for letting us know - and I hope you and Jim get some rest!