Saturday, December 29, 2012

James’ Seizures

James had quite the adventure the last two days, so here’s my way of documenting it for myself, and just for kicks you get to read about it too… If you really want all the details of this little 48 hour ‘adventure.’

On Thursday James began a new medication prescribed by his neurologist.  We were waiting until after the holidays to start him so that we would be in our routine and not off doing other things and we would know if it was really helping him or not.  The medication is one used to help kids with developmental delays and ADHD to be able to better focus and have more “control” over impulses.  It’s the same medication that Aleksa has had GREAT success on.

Thursday he did great!  In the evening he was tired, which is unusual, but that was a great effect of the meds if it was the meds that caused it.  Friday morning he was SLEEPING at 7 when I got everyone up.  James is NEVER asleep.  We never know how much sleep James actually gets because he wakes so frequently at night (he has a special needs covering on his bed so he can’t roam the house or hurt himself).  Our guess was that he likely woke up most of the night after the med wore off and then was back asleep in the morning.

We got James up, he toileted as usual, got breakfast and was pretty sleepy, but generally did fine.  He ate only about 1/2 of his breakfast, but James goes in to moods of eating and not eating, so it wasn’t anything unusual.  He got down and played with the other kids, got in trouble, was a generally ‘normal’ morning for him.

Around 11am I called the kids in to the main part of the house out of the play room (a converted porch that runs the entire length of the back of the house) since Delaina was down for a nap in an adjoining room and they were yelling while playing.  James walked in, tripped over his own feet, didn’t look down while walking and seemed to not be paying attention to the toys he was needing to navigate past. 

I called him over to the kitchen table since he seemed ‘off’ and he climbed up in his chair and sat.  He seemed to not be focusing well so I was keeping an eye on him, noticing that he didn’t seem to be moving his eyes within his eye socket, just looking out of the tops of them.  I continued making lunch, but when I got him his cup to let him start drinking, he picked it up without grasping it very hard and dropped it.  I asked him to give me 5, and he took 3 times of me requesting it before he lifted his hand in a half-hearted attempt.

I was concerned, but still he seemed to just be a little out of it.  He’d woken up sleepy still, maybe he was still tired?  Not so much.  He then went from ‘groggy’ seeming, to picking his cup up and drooling the liquid out of his mouth.  He started slumping over in his chair.  I noticed that no matter what I tried, he wouldn’t move his eyes in his eye sockets. 

Then, I called Mike and asked him to come home ASAP while I abandoned “making lunch” and instead stared at James and started pulling together his medications, feeding pump and supplies, clothes for Delaina, and diapers for both kids.  We were leaving for the ER ASAP.  As soon as Michael came home he grabbed the rest of our things together and got the car seats and strollers set up for me to go and I got myself ready.  In that time James went from slouching in the chair and drooling to falling completely out of the chair and not being able to support himself sitting.  The idea of calling an ambulance only flashed through my mind for a moment before I considered that our hospital that it would take us to didn’t have any pediatric specialists and we ultimately needed to be at the children’s hospital almost an hour away.

We talked only a minute, but considering that James was breathing and not actively seizing (though it sure looked like he was having seizures…), we decided the drive of 45 minutes west would be more helpful than 25 minutes north.  Off Delaina, James, and I went.

At the hospital we valet checked the car and went in through the emergency room.  When the people in front of us finished signing in, I was holding James and sat where I was asked to.  He promptly threw up next to the registration woman’s shoe.  She asked “so he’s throwing up?” and I said no, that’s the first time, but I think he’s having seizures.  She looked at him as his eyes rolled back up in his head and they skipped the paperwork and brought him back to triage.  He threw up again in triage but was weighed and they grabbed his medicine bag to get down his med names as they went through his history and what led up to this event.

We went back in the ER and were met quickly by multiple people- doctors, interns, and nurses- who worked him up with blood pressure, O2 saturation, etc.  The entire time we discussed the “episodes” myself, the doctors, and the nurses who experienced it with us said that he’s having seizures.  He was brought back for a CT scan pretty quickly which he laid in like a limp and lifeless child.  It was SCARY to think that he had gone from perky and happy to this incoherent child so quickly, and that he wasn’t “snapping out” of it.

After the CT scan the ER doctors suggested that the episodes could be a dyskinesia effect caused by James’ new med, not necessarily seizures.  This idea never did get ruled out, however the episodes certainly seemed much more like seizures than they fit the description of this side effect.  Even still, the seizures could also have been caused by the medication.

James began “coming to” around 4pm after a short nap.  He was given benadryl shortly after that in case it was a dyskinesia issue as well.  At this point our neurologist was consulted (she isn’t affiliated with this hospital) and the CT scan results were also available.  James has a small ‘spot’ on the brain that could cause seizures.  Because of that, our neurologist said she didn’t want him to just be sent home until they were able to rule out that he wasn’t going to be at a high risk for more seizures. 

At that point James was admitted and we knew there would be an MRI and an EEG happening before he was able to go home. When the pediatrician came in to admit him, he threw up all of the tube feeding that he’d had from 7-8pm.  It was the only food he’d had since breakfast.  A dose of Keppra was also given, which is an anti-seizure medication.

It was after 10pm when a bed opened on the floor we were headed to so we were moved upstairs and got settled in.  James was asleep again and sleeping soundly, so I was able to go next door to the cafeteria and get some much needed “lunch” to bring back to the room and eat.  A nurse asked to have James’ reflux med since it’s not one that they carry so it could be verified with their pharmacy.  Then she brought it back and said that the pharmacy wouldn’t verify it since it’s a liquid, and that the doctor could override that but refused, so they couldn’t give it.  She hinted that we could refuse their suggested ‘alternate drug’ if we’d like and I said yes, then used the syringe that happened to be left with the bottle after she left and gave it to him.  That is how it goes sometimes… Yes, it’s allowed :).  It was after midnight when the last of the doctors and nurses that needed to talk with me came through.

Every 45-90 minutes the rest of the night different people came through to check vitals, put respiratory meds in the room, drop off anesthesia forms, and the like.  Between that, sleeping on a cot, and having Delaina wake to eat during the night (and share a bed with me which always leads to sore muscles and poor sleep out of care to be watchful of how she’s sleeping), I got very little sleep!  James, however, slept ALL THROUGH THE NIGHT.  I’ve NEVER had him sleep through the night, especially when people are all around him and touching him, etc.  He slept until after 6am!

In the morning I was able to change clothes and get Delaina dressed.  Then the different doctors, residents, respiratory therapist, and nurse came in.  A pharmacist came by… to verify the reflux med.  Weird? Yes.  She looked at it, stuck a sticker on it, then went on her way.  That made life easier.  By 9am there was a man there to do the EEG and he checked to be sure the timing was ok, then went to go get things ready.  The nurse came and said to be ready to go to PACU and the respiratory therapist was in the room.  A wheelchair showed up for James, and so did the man for the EEG.  Apparently, we were going to PACU for the MRI and there was just a miscommunication between people which had 3 things happening at the same time for James.

Since MRI is harder to ‘get in’ on the schedule for, we were brought down to PACU for the MRI to be done.  There appeared to be some miscommunication with all of that too.  James was in the wheelchair with his chart, but PACU was expecting a nurse to be there with us that would be administering an IV med for sedation during the MRI.  That didn’t happen.  Apparently that nurse was being called in and and wasn’t there yet.  So…we met with the anesthesiologist, got permission to give James his reflux med (which was now officially verified), then after waiting about 20 minutes they brought us back up to the room.

The neurologist came up to the room at that time and spoke briefly with me.  Her view and mine don’t exactly mesh as far as some of her opinions of behavioral control and medications for a child with Down syndrome, however she was ‘on call’ and available for this situation, so it was ok.  Unfortunately, I didn’t have the opportunity to ask questions and only saw her before all of the testing was performed.  She definitely came to inform me of a few things then to leave.  That was fine, however I expected to have her give us some results later on which never did happen. 

A little while later the nurse that would do the sedation came in and spoke with us, then said she would be back shortly to take us over for the MRI.  Sure enough, she came back about 12 and we went over for the quick questionnaire and to sign consent forms.  Delaina was in her carseat and stayed in the “outer room” while I brought James in and settled him on the table for the MRI.  Before going in the room with the machine I had to take out my cell phone, coins, etc because the magnet is always active.  I asked about my belt and they said “you might feel some pull, but it’s ok”. 

They asked me to go to James’ head to keep him calm and help him lay down while he was beginning to get drowsy from the medication.  As I stepped closer to the machine, I lost my balance!  Why? Because that magnet is so strong that my belt buckle was about to knock me over!  (No, it’s not a big buckle! LOL)

While James was scanned, Delaina and I went across the street to the other hospital and had some lunch.  Just as I was throwing away my trash my cell phone rang and they asked me to come back over and meet a nurse by the employee entrance.  James apparently POPPED up when the machine stopped running and they wanted to make sure he wasn’t going to be upset without me there.  He’s usually pretty good, but I did go right away.

When I got there James was behaving, however he was also giving the nurse trouble.  His blood pressure was 140/90 and similar.  Not good!  He was calm, relaxed, and his BP during the scan was more around 95/40.  After calling the pediatrician just to ‘report’ it, his BP started to go down at least a little and we moved back up to the room. 

Once we got up they did another blood draw, this time to check his thyroid (never did find out why, or the results.  I realized this when driving home!).  Soon after that the man came back for the EEG.  James “did ok”. Smile  He was back to his baseline.  What does that look like?  Jumping on the bed, touching everything you say ‘no’ about, giggling, breaking down in fits of wiggles, then the very next second screaming in a fit of anger.  This is James.  He did ok, considering :).

After the EEG we finally got a sippy cup and some drink down him.  He kept that down!  First time!  After a little time we were told that James would be released and there was a new prescription for sleep med as well as a request to follow up with the neurologist’s partner that practices about 30 minutes from our home.  The floor nurse commented that since there’s no seizure med ordered, that there must not be any imminent risk and that the follow up would be to discuss the MRI.

We finally left about 5:15pm and headed out for fast food and a drive home.  Once we got home I took James out of the car and he practically fell over.  He had zero balance whatsoever!  He came inside and continued the same.  Eventually he perked up a little bit, got a shower, meds, and went to bed.

Now, it’s time for a good night’s sleep for Delaina and I as well!

Monday, December 24, 2012

Merry Christmas!!

Christmas eve 2012

It’s been a while since I posted (Sorry Linda!) but, here’s the crew!  It’s been a busy and exciting December and I have lots to share… some other time :).

For now, it’s time to go to sleep so Santa Clause can come.  I wanted to share this picture of our crew in their Christmas Eve clothes after church tonight.  Thanks Heidi for the suits for the little boys! They were all adorable :).

Monday, December 03, 2012


Yesterday was all about James, so here's just a bit about Micah :).

Micah is doing great as far as developmental milestones go.  He has matured so much in the last 2 years, but really over the past 4-6 months or so!  It's been wonderful to see him turn in to a "little boy" and leave the "toddler" type stuff behind!

There's one main area that Micah has always struggled, though, and he has made no improvements in this area.

He doesn't talk.

Not just "he doesn't speak well" or "he doesn't initiate things and only copies."  No, he actually really DOESN'T talk.  He doesn't attempt to use sounds to communicate, he doesn't mimic most sounds (occasionally he can look at us and mimic something, but it's not common).

Thankfully, he DOES sign!  So he has some communication, but nothing out of his mouth... not even a "mama" or "dada."  Nothing.

At our ENT appointment in November we learned that although Micah got ear tubes at the end of September (before our month of doom where everyone was sick!), that he still isn't hearing.  He failed the OAE.  He passed the tympanogram (with ear tubes, so it was an 'open' pass).  In the booth test before he got his ear tubes, he received a functional score of 60 decibels.  For reference, I understand that speech is at a curve right around 20 decibels.  In other words, he didn't hear speech.

We knew this, but we blamed it on his ears and put him through to get ear tubes.

Then he got ear tubes... and his booth test received... a 55.  Yes, 55 decibels.  Micah still isn't hearing.

Now Micah is scheduled for a sedated ABR, which is another hearing test that will measure the response of the brain stem to the sounds given through the ear.  Our ENT is guessing that Micah will need hearing aides, but will be waiting until after the testing to say for sure.

Just for kicks, James also failed his hearing test at 60 decibels the first time before tubes.  After his tubes he received a functional score of 30 decibels.  He, too, will have an ABR just to be sure he isn't dealing with hearing loss.  Of course he mimics, makes all kinds of "Jameseneese" sounds, and we don't have concerns with his hearing in a general sense (just his listening! LOL).

Unfortunately, these tests, scheduled a week or two ago, will not be able to be done until the first week of FEBRUARY.  So, 2 more months that I'll be saying "micah, Micah, MICAH, hey, come to the table please :)"

Sunday, December 02, 2012


Yep, just lots of thoughts about our little man James.

James turned 6 in August and due to the timing of his well visits in previous years, we had his well visit with our pediatrician scheduled for early October.  Unfortunately that well visit turned in to a sick visit because he had strep, then pneumonia, ended up in the PICU for a week, and finally came home at the same time that two of his siblings ended up with pneumonia.  Thankfully he recovered quickly after that whole escapade and now he's doing great.

Just before the entire month of doom at our house, James had a minor surgery (you might remember, we had 5 procedures done in 2 days on the 3 little boys).  James received new tubes for his ears and he also had his g-tube "re"placed.  He'd had it from the time he was 2 until he was 5 1/2 years old and at that time he was eating SO WELL that we were able to have it removed!  YAY!

Then, the day after it was taken out, James decided to start refusing food again.  For 6 months we struggled with weight, eating, behavior escalating, the inability to get medication in to him without full restraint (and despite his small size, that little boy is STRONG AS AN OX!)...  and so the story went.

At our 6 month visit with the GI doctor he very candidly said "it's up to you, but if you were to say "what do you want to do?"  then I'd say let's just put the tube back in so he has it and it isn't so much of a fight every day."  And so we did.

Then he started eating.

After getting the g-tube put back in (which I will mention here was the easiest g-tube insertion ever because he didn't properly close after the previous tube and he was able to have it reinserted through the same opening as before... no pain, no issues at all!), he continued on the same diet of 40 ounces of soy based "total pediatric nutrition drink" a day.

Now we can get the full 40 ounces in him on a daily basis.  Most days he even drinks it all ORALLY.  He doesn't do well with a pump hooked up all day (he is a bit on the ACTIVE side), so it's great that he can get it in on his own!  Unfortunately, now that he's eating it all... we have another issue we've been dealing with the last couple of months.

He loses half of it back out of his g-tube!

Yes, it leaks OUT through the hole that was made for us to put food IN to.   Since we couldn't get in enough calories.  And now we can.  But they come back out!!

I imagine this would be an excellent tool for someone that wanted to lose weight but had a huge appetite.  They could eat all day long and just "let it back out" through their stomach.  Except, that for him it comes out AROUND his tube.  And it smells gross.  And it soaks his shirt.  And it soaks his pants.  And did I mention that it smells gross??

And so... unfortunately, James' weight gain still isn't taking back off like it should.  In fact, he's pretty much hanging out in that "maintaining" zone.

We go back to the GI doctor next month.  I'm pretty sure the plan will be to take the LONG (annoying) g-tube out and replace it with a Mic-key or a Mini button (hahaha... yes, they're really called that, two different brands of the same low-profile feeding button). We'll hope that a button will 'seal off' better and not allow half his feeds to come back out in a (smelly) mess all over his clothes!

In the mean time, we're also in the process of scheduling for a urology visit and a neurology visit.  He's old enough to say that he's not likely going to just outgrow the hyperactivity.  It's time to find out if there's any other underlying conditions to his extra energy, zero sleep, and other concerns that we've had over the past few years.

Our little wild man also just had his thyroid medication increased, so it must be his turn to get all the medical attention and figure things out for him! :)