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kaaye

Please I have another question...

Thank you so much for the help and support you offered when I introduced myself and my son last weekend (I am Karen, mom of 4, dd (10)absence epilepsy, ds(4) currently undx seizure)..we are still waiting for our referral to a neuro but my son had an odd "event" this afternoon that i hope you might help me identify as being seizure activity or just "something else"....it stated at around 3pm (he was spending time in his room reading playing) and i went up to find him asleep, unusual but not worrisome but when i tried to wake him he was very "slow" to wake, had difficulty standing and coming down stairs but after about 20minutes he seemed much better and went downstairs to play with friends who were over....about 40minutes later he came upstairs and seemed to trip up the last stair and landed prettyhard ...when i looked at him he looked  a little dazed ...I picked him up and brought him to the couch when he started to fling his right arm up and down to his face and bring his left arm to his right elbow...he did it about 10 times and i assumed he was trying to let me know that his elbow hurt...he wasn't saying much but still with me....then he suddenly cried out as if in severe pain, hunched over his belly and then violently rocked from side to side ..... he would then stop and bring his hands to his head, cross them and close his eyes...then he would do it again crying out first....his eyes seemed to dart around as he rocked and he looked very distressed and in pain....I must admit i was really concerned.....he then seemed to calm down and fell asleep for about an hour....when he started to wake he again was slow to wake and complained of pain in his head and belly (he has severe GI issues)...now he had a grand mal before christmas but this was very different in the way he moved this afternoon...today was rhythmic but not necessarily symetrical...at points it seemed like he might hear me whereas before he definitely did not...after the fact he didn't seem to remember what happened but being 4 it is hard to judge his recollection ability....after he had "woken" up it was like nothing had happened and he was perfectly fine the rest of the evening......it seems seizure like but not what i understand to be a seizure...I do not want to "create" a seizure when it could be a pain response (to his GI issues) which does happen for him but not "this" way in the past....I feel like i am looking for seizure"activity" to justify the EEG results (several generalized spike and waves during drowsey period) which i do not want to do....can anyone tell me what this may or could have been...i do remember that you are not all drs but your experience seems so vast and full...i hope that you might be able to offer me some advice and guidance...of course this all happened after our paeds office had closed and on a Friday so i haven't contacted anyone...thank you all so much and please if i am asking too much let me know...Karen

Comments

RE: Please I have another question...

If he were my child, I would call the neuro ASAP. Do not hesitate to ask for help. Always know that you are the best person to advocate for his needs...no one knows your child better than you. Good Luck.Glad you have found this site, you are not alone.

RE: Please I have another question...

I am sorry, you had stated you were still waiting for neuro referral; have you thought about contacting your primary care physician ASAP to see if your appointment can be bumped up? If your son has more events like the one you mentioned, document them , for this is valuable information for the neurologist. By the way, are you being referred to an epilepsy center ? Hope this helps.

RE: RE: Please I have another question...

Young children are difficult to awaken from a deep sleep - often times they will fall back to sleep immediately, even in uncomfortable positions.  This can also occur during a post ictal (after a seziure) state so you do need to mention this to you  physician.  It may just be that you child was in a deep stage of sleep when you attempted to awaken him but iit is worth mentioning this to you physician until you get a diagnosis - this may or may not be related or anything to worry about.

RE: Please I have another question...

Karen,I agree with the other post, that you should contact your pediatrician and see if the appointment to the Neuro can be bumped up.  I keep reading how hard it is to see a Neurologist with some people.  When my son started having seizures, I went to see his Pediatrician and he was in the process of setting us up with an EEG, then his seizures went from 3 to 8 in one afternoon, I went to urgent care (not the hospital, just urgent care at my medical clinic) and they sent me immediatly to the Pediatric Neurologist that day.   After seeing the Neuro, he had us scheduled for a Stat MRI the next day and a stat sleep deprived EEG the day after.  Now I don't know if my situation was just the grace of God being in the right place at the right time, or if it was because it was so evident that he was having seizures on that particular day that the Urgent Care Pediatrician felt we should see the Neurologist immediatly.  In an ugent situation where they see your child is disoriented and they actually witness them not acting quite right, They might see the urgency we as moms see.I think what you described sounds like some kind of seizure activity and I would definatly contact the Pediatrician immediatly.  If something like this happens again, I would rush to urgent care, so they can see what you see.  You know what I mean?  Sometimes, it feels almost like the doctors think we are overreacting, but when they actually see it, things might get moving quicker.  Also, I was calling everyday to the Pediatrician to see the status of the EEG to keep them on their toes.Good Luck,Wendy

RE: RE: Please I have another question...

I forgot to add, that when Zach had his MRI, it showed he had a sinusitus, which was probably causing the sudden increase in seizure activity.  I just mention this because I had no idea he was even sick, there were no signs, he had actually just gotten over a cold and I thought it was gone.  If I hadn't done the MRI, I don't think we would have caught the sinusitus and I'm not sure if it just goes away on its own. 

RE: Please I have another question...

Thank you all very much...I really appreciate the support and information.  I will call his paed on Monday and let him know what happened... Ethan has been fine today I will update when I can...thank youKaren

RE: RE: Please I have another question...

Hi Karen,I am glad you are going to comtact the Pediatrician...I don't know about where you live...but I know my Paed has his Cell on him at all times...except when he forgets it in his car, or forgets to check the battery. LOL Sorry, I got off track...you see my Paed is my Husbands best friend. I even dragged him (literally) into the Pharmacy with me one time. My reason for saying this is ... If it happens again before your Doc appt, then maybe you can get into an Urgent Care facility. The doctors say that being able to actually see what is happening does hep with diagnosing. I don't know why I felt compelled to answer...I still battle with getting my Doc appts even though my best friend and my husbands are both MDs. Stupid HMO's.Dayna

RE: RE: RE: Please I have another question...

We live in Ontario Cda so our biggest problem is lack of specialists and waiting times.  If the paed wants to see him I know he will get an appt tomorrow if necessary (he is the best but there is no answering service that i can contact to get in touch with him beyond office hours) but we have to "wait" to see a ped neuro but i am hoping it will be a quicker referral bc the referral was to my DD neuro and i have already warned them that a referral was coming through for Ethan....but time will tell.  We had to wait 4 mths for Kiana's referral but thankfully her ped was able to start treatment prior to her visit (with over the phone consult) but her dx was a little more clear cut.  But I will let you know what happens....thanks for the adviceKaren

RE: Please I have another question...

Hi:My only thought is that he mioght have had a grand mal seizure while up stairs, amd that was why it was so hard to wake him. My son after a gtrand mal siezure sleeps for several hours. CALL the nurse at the neuro and beg for them to bump you up, if no success try your primary, if no help, go to Children's emergency room, there are Neuro Dr's on call. Just a suggestion. It's hard to know what to do, and it's even harder to do nothing. I know, my son is 3 and I have no idea what to do as it's hard to understand seizures.Best to you and your son!

RE: Please I have another question...

I hope things are agetting better. I would say that those episodes were probably siezures my 3 yo son has gran mal sz but his very in all different ways iI don't think thatit could be caused from  gi problems. request to see the neuro asap you need to get this controled. good luck

RE: Please I have another question...

Hi, my daughter who is 18 years old had odd "movements".  I finally borrowed a video camera and was able to show this to the myriad of specialists.  It would be a good idea to bump up the appointment.  My daughter has developmental disabilities, and it does complicate things.Hope this helps!  Mary

RE: RE: Please I have another question...

Thank you all again for your wonderful support and information....unfortunately he can't get in to see the neuro until Apr 28 but i have him on the cancelation list and the paed has said to bring him straight in to see him if anything further happens....thankfully nothing has. So we wait as usual...thank you all again for your great help!!Karen

RE: RE: RE: Please I have another question...

Is there any other neuro that you can go to? Two months seems way too long to wait. If not - you should call them once a week and ask if there have been any cancellations. Basically, get to know the receptionist/admin. Be really nice to her/him. They're the ones who will get you in when you're in a pinch. That has worked for us. Good luck,AmyQ

RE: Please I have another question...

Hi Karen,My son is newly diagnosed but I do know that after a seizure, kids are very tired and typically fall asleep..then may be slow to rise and be dazed. The arm jerking was probably part of a seizure as well. Seizures can be very outright and also somewhat subtle. Once you get settled with child neuro, they will tell you about it. There is a book by John M. Freeman called Seizures and Epilepsy in Childhood A Guide. I would suggest you purchasing it as I look at it often and it has a lot of information.jGood luck to you. I know how hard this is. A lot of childhood seizures are situations that kids grow out of in their teens. I pray for you and me both that our situations will be like that.Diane