My baby (he's actually 5) has pneumonia, acute duress with his asthma, & conjunctivitis.... He has been
having seizures, we had no idea there some type of silent ones with no convulsions. Which we've been clueless........ the other
day he did it again while I was at the DRs office with the DR. I was getting his coat on and we were ready to leave when it happen in front of the DR, this time was bad, in my arms he became blue, he stopped breathing (coded or something the DR was saying) my little girl & myself were freaking, he was uncautious for quite sometime......the episode was 2 minutes then 10 before he woke briefly...in and out of cautiousness for a few hours groggy not knowing who we were. Once he was able to sit up and be himself again several hours later it was like it never happened, he don't' remember anything at all....
that it's been happening for quite some time, starring episodes they call
them. I've been having to wake him every 2 hours around the clock for the
past 72 hours hours. He also does this thing of ignoring people?? Age appropriate I thought he is 5 1/2 y/o.....his eyes get a little glassy (kinda like he's about to cry but doesn't teary thing going on) and he doesn't respond right away to you but snaps out of it quickly type of thing.. We had no idea anything was wrong, sometimes he'd get time outs because we've been thinking it's a behavior issue and we just haven't been able to nip it in the butt yet...tried everything reward charts too...A couple weeks ago he started pre-school part time 3 mornings a week and not once when I picked him up have I got a good repost?? Just several time outs and destruction of property?? All because of he's day dreaming or spacing out, not listening and or ignoring the teachers? and when I called to let them know he'd be out and what happened.. They said they will continue to discipline my son for these behaviors..which the DR had told me that he may not be aware of these behaviors let alone have the memory of them.. I asked for that in writing from the DR yesterday!! They don't believe thats this is the case and my son is basically just a rotten child?! I have to let that one go for the moment since my immediate concern is my son and his well-being and getting the appropriate care ASAP! EEGs, one awake and another sleep deprived, I'm suppose to keep him up all night....hmm that's be fun!
We have several appointments, consultations with 2 and possible a third special pediatric neurologist's in Boston. I've heard from 3 different one the past couple days who 'd like to see him...From my understanding this is a rare type or epileptic form of seizures in less then 4% if that I've been told.
What would anyone think?? Someone trying to get their own way? Who would've thought. The DRs has been checking in every day several times through the days since. I think he had a couple tiny episodes since..... The DR suspects this has been going on for sometime well over a year possible 2 thinking back....I feel like the worlds worst mom!! Very depressing.. Should I have noticed sooner and stopped downplaying it?
on another note
a few weeks back I was teaching a woman how to knit socks, I even RAK'd her a ton of stuff, a Debbie Bliss book with a tote full of different yarns, some needles, etc to help a new knitter get started...I've even been helping her knit trying to get her to do socks....Whats up with rumor of good things for those who give and give and give help & time to others.... Isn't it time for us to have some good things happen to us or at the very least some good karma around us... Why me?? Since it's been one horrifying thing after another
I'd even settle for some boring life time right now.
I've got a couple rubber stamps that arrived from someones home party I went to last month.. Now I think I need to sit and make some cards with my kids or maybe some me time... sounds better I think...I'm suppose to be collecting some orders from a friend... Anyone want to purchase some rubberstamps or scrapbboking stuff you can here but don't order online email me me your order
A couple weeks ago I did finish a special hat for my daughter, she told me what she wanted and we did it.. She LOVEs her new hat and even wears it too! so that in itself makes me feel better
Hard to see by the pictures but it's a purple with speckles and pink around the face opening. I sort of changed this pattern to suit my 6 y/o little girl and some stretch to last sometime for her.....
Ok back to resting before the round of medicines.. he's taking 8 at the moment. None for the seizures yet.
17 comments:
Wow - that is scary - I'm so sorry to hear that you and your son have some much crap going on. How will they treat this going forward?
On a happier note - I loev your daughter's hat - where did you get the pattern?
OMG...I can't imagine how horrible you feel about not "seeing" it. Glad you were in the dr's office when he had a seizure.
Hugs! Good luck keeping him & yourself awake all night before that test.
Oh, your poor son. I hope they figure it out soon.
Well done for letting go of the pre-school's attitude to it for now - there's a battle there, but it's one that can wait.
Hope you get through this and that some good karma comes your way soon.
I just had to respond. My son had several seizures like this as a toddler, but they weren't recurrent and they were focal like you described, but he stopped breathing during them. (So not quite what your son is going through, but I'm aware of them) I'm not sure what help I'm trying to be to you, but I just wanted you to know that you're not a bad mother for not grasping that right away. Sometimes we know that something's not quite right but can't put our finger on it. (((Hugs))) to you.
And the EEGs are a little taxing, as is keeping them awake the night before. We hung out with DVDs and kept him awake as long as we could, although it never really worked out as well as I thought it was supposed to.
Prayers for you and your little boy. Epilepsy and associated disorders aren't necessarily an exact science and it may take some time, but it sounds like you're on the right track with the neurologists.
Best Wishes (sorry I'm so longwinded!)
Amy
I hope everything gets better with your son - what a scary situation! My heart goes out to you guys!
You're really having a tough time at the moment. You must be so worried for your son. One thing's for sure - you're NOT a bad mother.
I really hope your son gets whatever help he needs soon, and hope that life gets a bit easier for you too.
Take care.
Oh no, that's so scary! Bad as this sounds, I'm glad he had a seizure in front of a doctor because many doctors take other doctors more seriously than mothers who tell them something unusual is going on. I hope the neurologists figure out what exactly is going on and that the seizures just go away over time. Your family will be in my thoughts and prayers.
As for the kindergarten people: ARE THEY INSANE??? Change kindergartens or preschools or whatever. I have a physical disability, and my PE teacher would grade and treat me like any lazy kid who could actually learn to do chinups or climb up a rope but chose not to try. It's a painful experience when you're trying the best you can but just can't do it because you just can't. You're a wonderful mother, and having your son chastised for something he can't control or remember is not an option. Who gave those people a license and let them loose onto unsuspecting children???
OK, on a knitting-related topic: that's a very nice hat. I'm thinking of making something similar for myself, it's so cold today!
I am so sorry that you are going through this. My 10 year old son has petit mal seizures he blacks out for about 10 to 20 seconds everytime he has one. We got them under control with meds but I didn't even know it was going on until one of his teachers asked me what was wrong. So don't beat youself up! Good luck and if you need to talk I am always around!! :) Take care!
i am so sorry .... going through this sort of stuff is super hared. And the school!!!!
anyways ... i know you know that I am your pal!! email me cuz i need to make some arrangements for you.
fibreaddict at gmail dot com
Geesh!! You need to get a break!! I'm beaming some good thoughts, wishes, karma your way!! Take care!!
Love the hat! Glad she does too! :)
First of all, of course you're not a bad mother!! I remember a little bit about this type of seizure from the brain courses I took in college for m psych. BA, and they're rare, and not something that ADULTS who have them even often pick up on... I'm just glad that they know now that something is happening, and I'm sure they'll get it under control... you're in my thoughts.
Secondly, his preschool sounds really forking clueless. Ugh. I'm sorry you're having to deal with that on top of everything!!
I DO get the "why the hell is this happening to me" thought... I definitely get that. And I don't know why. But you can join my club.
Hang in there. The hat rocks, and I'm sending good thoughts and prayers your way!
Sorry to hear about your son. Hope things get sorted out quickly for you all ;)
So sorry to hear about what's happening with your son. That is so stressful. FWIW, when my son had to have an EEG, he got to play computer games all night long. He stayed awake, and after pitching a 5 minute fit at the hospital, fell fast asleep and didn't even remember the EEG.
Good luck!
My goodness, I don't have any advice but just good thoughts and hopes you are able to discover the root of your son's illness.
An invitation because I love your blog and I would love to learn more about you:
Write yourself a manifesto. Make it specific (knitting or parenting or music) or general (like mine) So that I can read it.
Hey, I live next door to you in the knitty ring, so I read your blog all the time.
I'm sorry to hear about your little boy, poor thing. I hope he's ok.
{{HUGS}} I'm so sorry to hear about your little one. When it rains it pours huh? I wish you all the good karma possible as you definitely need a streak of good luck here. Take care of yourself and your baby. {{HUGS}}
And for what it's worth, I would tell the kindergarden people where to go and how to get there especially if they are still so harsh despite the doctor's note. Good luck!
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