Worried Mama - spent afternoon in ER

I'm one worried mama right now and was checking to see if anyone else has experienced this. Our DD (Maddie) started having some episodes this morning where for a split second she seemed to lose control of her upper body. She was sitting down playing and all of a sudden she would slump forward like she could not stop herself from falling. It's almost like she was doing one giant head bob and then she'd snap herself back upright after two seconds. She must have done it 10 times in a row and started to fuss after each one. Poor baby was so scared and frustrated from what I could see. My DH and I recognized right away that something clearly was not right.

We took her to ER at our pedi's recommendation and she actually had some more episodes there in front of the attending. We are following up with a pediatric neurologist this week for further evaluation in case these might be seizures.

Has anyone heard of anything like this? I'm sick with worry right now. I was thinking maybe it was just an ear infection throwing her balance off but her ears looked great.

 

:hug: No experience. I am sorry that you have to go through that.

 

I have no experience, but wanted to give you big hugs. :grouphug: That sounds really scary and I hope you get some answers this week. I remember when my niece was younger, if she took a spill, she would scream crying and then pass out. She had to go for a lot of tests and they never really determined what it was, but she grew out of it.

 

:hug: I don't have any experience but I am wishing the best for you and your DD. Please keep us posted.

 

No experience, but just wanted to give you a :hug: That must have been so scary and I can only imagine the worry. I hope you find out some answers soon and I'm also glad that the attending was able to witness what was going on so that it wasn't just brushed off. The only other thing I can think of is to possibly try to get it on video if she does it again so the Neurologist can take a look. Keep us posted.

 

Thanks Ladies. I'll be sure to update everyone as soon as we get some new info. This is definitely not helping my anxiety issues as of late! I'm going to be saying lots and lots of prayers to the big guy (or lady!) upstairs.

 

The attending recommended trying to capture on video too. Great minds think alike! I would never have thought of it myself. That's my top priority over the next day or two.

 

My hubby is a nursing administrator for a big Neuroscience outpatient clinic (his major focus is in Neurology). The Dr.'s are always glad when a family can come in with a video to help them see what it is they are describing. I'm sorry again that you're going through this.

 

Have you given her any new foods? Does she have any food allergies? I had forgotten that I had a friend whose daughter was having small seizures-even had her on meds for them. It turns out that she is very allergic to dairy and wheat. Once they removed all of that from her diet, she never had another seizure. If in fact that is what she is doing.

 

:hug: Sorry, no experience here either but wanted to send you big hugs and positive vibes! :grouphug: I hope they are able to find resolution soon!

 

Not anything jumps out to me really. We gave her strawberries yesterday at lunch and she hadn't had those for a couple weeks. She's had them a few times and never reacted badly to them. She eats a good amount of dairy and whole wheat products and also seems to tolerate them well. Hmmm. I'm going to mull this over some more.

Thanks for the tip!

 

:hug: i've had no experience with anything like that, but can only imagine how scary it would be. please keep us posted. :hug:

 

Sorry can not contribute anything other than i am sorry to hear this for your little one...I do hope it is something simple that can be adjusted (food wise) and not anything serious....pls keep us posted...Hugs...

 

I have no personal experience with that- but sounds so scary. I am sorry you have to deal with it. I hope you get some answers quick and that it ends up being something you won't really have to worry about long term. Hugs. :grouphug:

 

Wish I had some advice. I hope you can get some answers and catch it on video if it happens again. I'd be scared if I saw one of my guys doing that too. :grouphug:

 

Thanks again to everyone for your support. A couple updates so far. We successfully captured Maddie's episodes on video and that proved really helpful to the neurologist. She suspects these may be seizures at this point but nothing definitive yet. We also had an EEG and will be meeting to discuss everything tomorrow.

It's weird because my gut does not believe these episodes to be seizures. Just a feeling something more simple is the culprit. I truly hope that's the case.

I'll update more tomorrow.

Best,
Lisa

 

Our DS has allergies to amoxicillian, milk, casein (milk protien), whey, and cheese. With the amoxicillian he didn't have a reaction until the 4th time he was given it for an ear infection. He didn't have seizures, but the ER doctor told us to watch peanut butter, wheat, and strawberries. I saw you mention strawberries, so I wanted to bring that up. Our DS broke out in severe hives and gained a lb. overnight from fluid retention. He was so swollen his fingers and toes were purple. Now I have to read all labels and hope he outgrowns the food allergies by the time he is 5 y.o.

It is also good that you captured it on video because the ER doctor told us that a patient before us had his parents say he was having episodes. After 10 minutes of trying to explain the episodes the father said they had it on their camera as video. Turned out to be seizures. I think with today's technology it is great to document with video or pictures for the doctors. Good luck on finding out what is going on.

 

Just looking for an update. I hope your appt goes well today. :hug:

 

Just wanted to let you know I'll be thinking of you today, I hope all goes well, update when you can!
rebecca

 

Lisa, I am thinking of you and thank you for keeping us posted when you can :hug:

 

Thinking of you ... Please update when you can.

 

Thanks to everyone for all your thoughts and prayers. I'm still trying to come to terms with the information we received yesterday. The neurologist is pretty confident Maddie has something called Benign myoclonic epilepsy which occurs in children between the ages of 1-4. Her EEG did show some seizure activity but the background looked completely normal. She was prescribed a medicine (depakote) that should help stop these seizures from happening. She favors treating it with this medicine since she's in a critical development period (walking and talking). We don't want her falling down all the time or refusing to stand up when she's started cruising all over the place.

The good news is almost all children outgrow this form of epilepsy anywhere from one to six years (most extreme). They also don't usually suffer any cognitive impairment or developmental delays. My family is so thankful for this part of the news.

It's been a difficult day thus far trying to cope. I'm doing the best I can at the moment. Part of me is still shocked and the other is terribly sad. I wish I could just hit the fast forward button to when I'm okay and dealing fine with everything.

 

Im very sorry you are going through this. It must be terribly distressing for you all. :hug: I´m glad the neurologist seems to have identified what´s happening. I hope the medicine helps and that she outgrows the seizures asap. Please keep us posted. You and your family are in my thoughts and prayers. :hug:

 

Oh wow. In the grand scheme of things, it's good to know that it's something that she should outgrow in the next few years. I'm sure it's overwhelming to think about and I'm sure you've gone through or will go through a million different emotions. Hopefully by the time she's in school, it'll be long over. Thanks for the update.

 

Wow. I know you are in shock right now, but I am glad that you finally know what is going on. :hug:

 

:hug: thanks for the update. you must feel like you're on a roller coaster right now. that's great to hear that it's something she will outgrow but it's hard to hear that anything is wrong at all. :hug:

 

Thanks for the update. I read the whole thread and I feel so bad for what you are going through. I am glad to hear that she should outgrow this but it must be really hard to get that news. Take care and my thoughts are with you!

 

I'm sorry that you are going through this. Thanks for the update.

 

:hug: I am so sorry for what you have on your plate. Hang in there.

 

Big :hug: to you. I know this information has to be overwhelming and worrying but I am so happy to hear that she will outgrow this. Thank you for keeping us posted during this hectic and scary time for you :hug: