Hi,
So on Easter Caleb had another blue episode while awake (posted previously). Then the olympia of seizures happened. One thing I noticed when he was having all those seizures were some strange arm movements that I had not noticed prior to Easter. I thought that they may be part of the seizures and kinda logged it away in my mind. Now that he is recovered the arm movements are still happening. Not all the time. Primarily if he has been overstimulated. They pull up on his chest and his head hangs low for a moment and then he returns to normal. I have also seen his right arm come up in a "swan" shape (as if you were doing a shadow puppet) and then go back to place. I spoke to his doc and they said they do not even want to speculate at this time as to what is going on. Truly?? What kind of answer is that? I was worried about further brain damage, but since it is not consistent I dont think that is what it is. I am also concerned if it could be a sign of something degenerative? Or maybe it is more seizure activity? Any ideas?? He is definitely not playing when this happens.
Thanks!
My son had his first and only seizure last summer, and it was strange. It appeared that he was conscious, but he wasn't. He was even smiling at times. He was strangely rigid in his core, but his arms were somewhat in control. He went on like this for over an hour. We live in a small rural community, and when I got the EMT over (we know her), she told me it was a complex seizure. She told me that in special needs kids, they do not manifest the symptoms like textbook descriptions. Doctors who stick too much to the medical books may not even call it a seizure (The ER doctor did not even think he was in seizure, but he found out when my son snapped out of it...loudly)
Quoting Kimann4444:
My son had his first and only seizure last summer, and it was strange. It appeared that he was conscious, but he wasn't. He was even smiling at times. He was strangely rigid in his core, but his arms were somewhat in control. He went on like this for over an hour. We live in a small rural community, and when I got the EMT over (we know her), she told me it was a complex seizure. She told me that in special needs kids, they do not manifest the symptoms like textbook descriptions. Doctors who stick too much to the medical books may not even call it a seizure (The ER doctor did not even think he was in seizure, but he found out when my son snapped out of it...loudly)
Caleb has had partial complex seizures since he was born. Where he has staring spells (completely vanishes emotionally for a time and his body is frozen in time) and convulsive seizures. We have been trying to get the arm movements on video but they are so random and dont last long. His OT is going to try to "induce" them to see what she thinks. His doc often calls his symptoms "Another mystery of Caleb" but then we find out later what is going on. Like when he was waking up soak and wet with a clear fluid obviously coming from his mouth with no smell. I thought it was reflux, docs told me no it would have a smell and color. Turned out it is reflux. After it happened to one of the docs new baby!! The doc apologized to me and said she will listen more closely to parents in the future! Things ARE different for special needs kids. They certainly are not test book :)
I hope your able to get it on video so the Dr can see what your explaining is happening.Keep us updated.
GOD first ppl next things last you cant go wrong and w/ GOD and JESUS around you,you will be a a triple strand rope
First you need to ask yourself whether anything else occurred that could also be a possible culprit of these seizures. Around Easter, were there any other changes to his routine besides the "blue episode"? Did he start, stop, or change the dosage of any of his meds/supplements? Did his diet change? Was he sick with a fever directly prior to the seizures? Also, it is possible that he tensed up his arm so tightly during the Easter episode that it is still spasming while it heals.
Once you can reasonably narrow the cause of these seizures down to the Easter incident itself, then you can start solving the mystery from there. What is the technical term for Caleb's condition? If I were you, I would log onto your favorite internet search engine and key in the technical term PLUS the word "seizure" and see what pops up. Since his condition is so rare, you'll likely have very few hits and limited information, so you'll probably need to run ANOTHER search by keying in the technical term PLUS "muscle spasms" or "petit mal." Most of these hits will probably be medical journal entries, which makes them difficult to understand for those of us who did not graduate medical school! Use whatever information you find to make a list of informed questions. Then print off the questions and the medical journal entries and bring them to Caleb's next doctor appointment. In my experience, doctors are most useful when someone does the "grunt work" for them :)
p.s. Another good place to start would be the neurological aspect. Could it be, that the same part of the brain that controls the breathing reflex also controls certain involuntary arm movements?
What a blessing that you have a doctor that listens to you! Sometimes it can be really difficult to wade through the issues at hand. I pray that the Lord shines the light where you need it for Caleb's peace.
Quoting chelseamcnorman:
First you need to ask yourself whether anything else occurred that could also be a possible culprit of these seizures. Around Easter, were there any other changes to his routine besides the "blue episode"? Did he start, stop, or change the dosage of any of his meds/supplements? Did his diet change? Was he sick with a fever directly prior to the seizures? Also, it is possible that he tensed up his arm so tightly during the Easter episode that it is still spasming while it heals.
Once you can reasonably narrow the cause of these seizures down to the Easter incident itself, then you can start solving the mystery from there. What is the technical term for Caleb's condition? If I were you, I would log onto your favorite internet search engine and key in the technical term PLUS the word "seizure" and see what pops up. Since his condition is so rare, you'll likely have very few hits and limited information, so you'll probably need to run ANOTHER search by keying in the technical term PLUS "muscle spasms" or "petit mal." Most of these hits will probably be medical journal entries, which makes them difficult to understand for those of us who did not graduate medical school! Use whatever information you find to make a list of informed questions. Then print off the questions and the medical journal entries and bring them to Caleb's next doctor appointment. In my experience, doctors are most useful when someone does the "grunt work" for them :)
p.s. Another good place to start would be the neurological aspect. Could it be, that the same part of the brain that controls the breathing reflex also controls certain involuntary arm movements?
Thank you for the great advice! I had already done this. Nothing comes up... The info always goes back to documents about seizures or obstructive apnea. He has idiopathic central apnea with Chiari 1 Malformation and partial complex seizures. The Chiari is secondary to the central apnea and will not be fixed with Chiari surgery. Then a list of other secondary issues to long to detail.
Personally I was afraid when he stopped breathing while awake and playing on Easter which resulted in him passing out and turning blue, we just call it a blue spell, that he recieved more brain damage. But since he is normal again most of the time I do not think that happened. Chiari can cause involuntary arm and head movements due to the strain on his brain stem, so I thought that was worsening, but the docs did not want to comment. He did not have a fever and wasnt sick either. Then I think it may be seizures trying to break through and are being blocked by the meds. He had an increase in his seizure meds a week before the Easter incident and then another a week after during the 9 day seizure stint. His diet is very strict due to food allergies and so forth, so that did not change. Anoter reason i think it may be seizures too is that it happens when he is overly stimulated. BUT of course the docs say this is not "typical" seizure behaviour. OK... But stopping breathing for no reason while trying to live your life is not "typical" behaviour either, so he is obviously not typical.... It is just soooo frustrating at times. Not that the docs can really DO anything, but hey, dont treat me like I am crazy and blow me off! Thanks for listening :)
Quoting chelseamcnorman:
Any updates on the little fella?
Thanks for asking. He has been real moody. He has gone the last near week very agitated and throwing fits all day long. He is two, but I also know when he does this we are usually in for a big seizure or something else. So today he is more lethargic not really wanting to do much. Which is just great. Keeping a close eye on him, waiting for something to happen. Dont know if he had a seizure in his sleep to cause him to be out of it. Docs just say to keep them posted....
for your strength and figuring out whats goin on w/ your ds.
GOD first ppl next things last you cant go wrong and w/ GOD and JESUS around you,you will be a a triple strand rope
Best Mother's Day Videos!
- 2Cor915
on May. 6, 2012 at 1:48 AM