Saturday, December 27, 2008

BIG more unknowns

Charli had her 6 mo immunizations yesterday. She had been cranky all day (as she has been the last week or so..we think she is teething). She woke twice last night (unsure of time) crying out..she has done this occasionally in the past..I gave her the bink and she feel back to sleep. She woke a third time and my husband was just coming to bed (around 4a or so) and I went to give her the bink and could feel the heat coming off of her. I flipped the light on and she was pinker than pink, her whole face. I took her temp, 101.3 rectal. She has never gone above 99.5 for anything, not with her ear infection or shots. I called the ped and while waiting for him to call back I started noticing a pattern she was making with her right arm (her affected stroke side..something she never does). She would bring it off the bed in like a half arc to straight up in front of her then put it down again. I looked at her face and her eyes were open, she was moving her head back and forth (not fast, but like she does almost when she sleeps and is restless) and she was smacking her lips and kind of licking them with her tongue. she was also kind of straightening her legs out at the same time together..tensing them. That was when I started to panic. The ped called, I told him all of this and he said to try and record it with a camera if I could so they could see if it was definitely a seizure. My DH couldn't find the camera *he had taken his Lunesta already and was OUT OF IT!* and while still on the phone with the ped she stopped doing it, at the same time my DH was talking to her and she started opening her mouth and moving her left arm at him (she looks at us and opens her mouth wide a little bird all the time. Not sure why she does it, I guess it's a happy thing). Ped said he thinks it's a partial seizure given the fact she "came to" or oriented again so quickly, and didn't really lose consciousness. I have no idea what a partial seizure is, or really what to expect with febrile seizures (FTM here) he said it didn't sound like a febrile seizure to him, and based on her stroke history she is at risk to have seizures with fever I guess (no one ever told us that before...but It's something I've always worried about for some reason. I'm OCD about her temp and never knew why really) We were told in the NICU and at follow up with the ped neuro she didn't have seizures and they didn't think she would have any. Now I'm freaking out (although surprisingly calm given how anxious I usually am) He wants me to call neuro and get a repeat MRI and EEG (both of which haven't been done since NICU) and if her temp goes over 102 or she seems to have another "episode" call 911 or go to ER depending on how stable she is. I think my calm is I need to be calm and keep my wits about me in case something else happens. One thing I've always been is calm in a crisis. My mom is on her way down to watch her so I can get some sleep later. I'm sure I'll lose it then. I've always been so scared of her having a febrile seizure, and now the ped says she may need seizure meds etc. I guess the point to my rant is has anyone dealt with this "partial seizure" before, and what really happens during a seizure? For working in health care as long as I have I've never seen anyone actually have a seizure. I know what they tell you to look for, but should I be noticing or looking for anything else that they don't normally tell you about?


Carrie said...

How scary!!! Hannah wakes up crying at night (while she is sleeping) but goes right back to sleep after about 10 to 20 seconds...freaks me out.

Remember to just take it one step at a time. If she is having seizures, then the seizure meds they have these days for kids are really good.

We just need to solve one problem at a time.

Give her a big hug from Hannah!

Carrie said...

I just wanted to let you know I added Charli to Hannah's sidebar so my friends can get to know her as well.

Katiebear said...

OMG, how scary! We had an incident awhile back from after my daughter received her 5th DTAP shot. We kept going back to the ER 3 times and basically they told us it was a UTI, keeping taking the antiobiotcs (I didn't believe this) since she was peeing normally and not complaining of any pain while peeing etc. I believe she was having a reaction to the shot. She had a welt on her thigh about the size of a clementine orange, it was hard, she had fevers reaching close to 105.

We are going to CHOP in January to see neurology(we go to CHOP for everything else just about, why not tack on something else) anyways, it is because we think our daughter is having petite mal/Absence/Silent seizures. She is likely ALSO just staring into space like a little space cadet, in relation to Autism, but we want to be sure it is nothing. They seem to happen frequently which over time can add up. It's been reported in her IEP and they brought in a vision consult but she doesn't think it is a vision issue and noted the behaviors she seen and basically told us it wouldn't hurt to have neurology take a look at her and the concerns.

Erin said...

How scary and I hope Charli is okay. Did you call the neuro? What did he think? Sean suffers from complex partial seizures but there a few different types of partial seizueres.

Sean's last about a 1 min or so. he will stop what ever he is or was doing, space out, eyes glaze over, eyes blink, his mouth moves like he is chewing (but he is not chewing anything), sometimes he does the pincher grab trying to grab something off his pants but nothing is there. Not sure if this helps or not. Sean has been on meds for awhile and we only saw some in the first few weeks. (knock on wood)

Christine, Jason and Baby said...

Coming over from BabyCenter to check on Charli. How scary. I will pray for Charli. Your family is in my prayers.

Achika (We passed some notes on babycenter if that lets you know who I am better)

Ellen said...

That's scary... I just posted a blog today that mentions diagnosing seizures, and other advice for moms of young kids with special-needs kids, something I said might be of help.

samandjimblock said...

Hi! I found my way to your blog via Hannah's blog (my son Connor is featured as one of her special needs friends). I just wanted to comment that this would most definitely be reason enough to stop all vaccines until you know what is going on. If you decide sometime in the future to start vaccinating again, I would recommend that you do only a single vaccine at a time, separated by several weeks at least, so you can watch carefully for any reactions. I sure hope this never happens again! Hang in there!

The Preister's said...

I stumbled across your blog by checking out some others (I got the actually link from Hanna's site, which I found from Parkers, which I got to from Joey R from Nebraska!!)and noticed that our kids share the same name!!

Our daugther, Charli, was born in July of 2006. About seven months later she was diagnosised with Neuroblastoma, an agressive form of childhood cancer. Through the grace of God she has been one of the lucky ones and is now 2 1/2 ...and very "2"!!!

Charli is a "tuff" name by nature...I will continue to keep Charli in our thoughts and prayers. I am off to start at the begining...!

Brenda Preister
mom to Charli, 2 1/2 year old cancer survivor

Connor's Mom said...

How scary for you! Seizures are always pretty frightening.

Our son Connor has had febrile seizures and complex partial seizures with secondary generalized seizures, and we have family members who have both simple partial seizures and generalized seizures, so I'm pretty well versed in the different types. I'm not a doctor and a neurologist is always going to be your best resource, but I can pass on what we know.

The good news about febrile seizures is that though they look scary, they are almost always completely harmless and your child grows out of them. Usually the doctors don't choose to treat for febrile seizures unless they are extremely long (a half hour or more) because they are usually triggered by the rise in temperature at the beginning of the fever, so they are very difficult to predict. In addition, they don't occur at any other time, and they don't usually cause any health issues for the child.

What they probably need to figure out is if Charli did have a seizure, whether or not it was a febrile seizure or if it was a partial seizure not caused by a fever.

A partial seizure is a seizure that starts in just one part of the brain. There are two types of partial seizures-- simple and complex. In a simple partial seizure, the person is awake and oftentimes aware that they are having a seizure. People can often talk and interact with others during the seizure. Depending on the part of the brain that the seizures are affecting, different things can happen. Repeated uncontrolled movements such as twitching or jerking, sudden emotional changes such as rage or euphoria, or hallucinations can all be experienced during partial seizures. Here's a video of a girl having a simple partial seizure:

In a complex partial seizure, a person is unaware of their surroundings, enters an altered state of conciousness, and cannot remember the seizure after it has happened. Usually the person having the seizure starts off by staring blankly into space. Then they may spout nonsense words, have repeated movements, or even act like they are sleepwalking-- walking around and performing tasks without being aware of what they are doing. Here's a (acted) version of what a complex partial seizure may look like:

Medication is usually used to control both simple and partial seizures.

The epilepsy foundation is a great place to get information about different types of seizures.

Hope that helps!


Connor's Mom said...

Silly me-- I just realized this post is several weeks old. I'm sure you have all the info you need now. Guess I should pay more attention to dates! Sorry. :)