Monday, 16 July 2012

Day 9 and finally feeling fine! (WARNING: TMI)

Holy crap (pun intended)! Never have I been more obsessed with poop than I have in the last week!

On Saturday, July 7th, poor Ryan started crying and feeling uncomfortable. He had a few very mushy poops...the next day he had 4-5 mushy and watery poops. By Monday, he didn't poop at all and was screaming. Tuesday more yucky poops and crying, Wednesday no poops and didn't want to eat lunch...loads more screaming! :o( Given all that Ryan has to deal with I don’t mess around with anything that seems off with him. Here we come again ER (both his ped and family doctor don't work on Wednesdays)!

My Mom came with me while my Mother-in-law stayed at home with Quin. Each time I leave the house with Ryan and not Quin (which is frequent due to all his therapy and doctor appointments) I drown in guilt. She so young and so sweet and doesn't completely understand it all but she is quickly catching on to the whole situation. Trying to explain everything to a 3 year old though isn't exactly easy. Anyway, got a little side tracked. Thank goodness my Mom came with me...Ryan was in a bad bad state shortly after we got there and I was so happy to have the extra help (especially from my Mommy..haha). It was so sweet seeing him cuddle into his Grandma's arms.

On the way to the hospital Ryan (the little bugger) was actually making happy cooey noises...even when we got to the ER and were checking in they asked the reason we were there. I told them excessive inconsolable crying and screaming. I swear she looked at content little Ryan, then me and sighed. Off we went to the first waiting room to have the triage nurse look him over. When we were called he was still fairly ok but very quickly fell apart and it just got worse from there. Off to ER waiting room #2 we went. It was a bit of a wait but we were eventually taken to a bed and waited for the doctor.

I again went through his medical history and medications and the reason we were there. By this time Ryan was incredibly upset and while my heart was breaking for him seeing him in such pain, I was glad that it was happening in front of the doctor so she could see just how awful he was feeling. They ran some standard “tests”, pulse, oxygen levels, temperature etc… They wanted to test him for a UTI which meant a catheter. This isn’t a fun process to have done once for an adult…never mind TWICE when you’re only 20 months old. They couldn’t get any pee out of him on the first try so they put a bag on him but after an hour and a half of not peeing they had to catheter him AGAIN! :o( It was god awful for him (as you can imagine). The UTI test came back negative. He was also sent for tummy x-rays which according to the ER doctor showed significant ‘fecal loading’ as she called it. But the pediatrician who saw him a couple of days after the ER visit said that upon looking at the xray he didn’t see any significant back up. Ugh, this is all so confusing and frustrating…why can’t we just be given a nice simple straight answer!!! We were in the ER for 5.5 hours 1:00pm - 6:30pm (ish). Ryan generally naps between 1pm and 4pm but he absolutely refused to sleep (can't blame him with all the poking and proding he was enduring). Here he is totally exhausted:

What we did know is that Ryan was a little backed up but that he was also having “overflow” issues (diarrhea). Really? Both at the same time…the poor poor babe he just can’t catch a break. The ER visit was on a Wednesday, for the next few days he continued to cry, scream and literally writhe in pain. Everything was done to make him comfortable, Tylenol, Advil ,warm packs on his tummy, upping his Polyethelene Glycol (poop softening meds). Nothing was working. On the weekend we decided to try switching him to lactose free milk (what sucks is that for some reason 3.25% doesn’t come lactose free so he’s only getting 2%)…that didn’t seem to do much. At the advice of a few wonderful people I switched him to just plain old rice cereal (maybe he has an issue with gluten). Within a day he was doing much better!!! Yesterday (Sunday) he was smiling and being his silly, goofy little self…he even had a little giggle! The atmosphere around the house was much improved knowing Ryan was once again comfortable and content.

So as it stands right now we’re sticking with lactose free milk and hope to find some gluten free baby cereal (he still doesn’t really know how to chew so he’s still on puree’s and cereals). What isn’t fair though is that I read that in order to find out if you really do have an issue with gluten you need to be eating the things that make you feel crappy in order to get a diagnosis. So I may have to switch him back to his regular cereals if we get him tested. For now though I’m going to go with what seems to be working for him because holy lord this child needs a break! I’ve put in a call to the pediatric allergist that he’s been referred to in hopes of getting his August 17th appointment bumped up and a request has been put in to have him put on the cancelation list for his GI appointment which isn’t happening until October 4th.

In the middle of all this craziness I also took him to the family doctor on Friday to get a requisition for his hips. When you have low muscle tone it's common to have issues with your joints. Ryan's hips seem to be clicking and popping more than normal lately so he's being send for xrays and ultrasounds on both hips.

Today is Monday...fingers crossed for a drama free week!

Thursday, 5 July 2012

Where did my baby go for 2 weeks?

On June 14th, Jeff and I celebrated our 4 year wedding anniversary (it's also the day we met 15 years ago). Been a busy 4 years let me tell ya!

Christmas 1997 (dorks - haha):
Honeymoon 2008 (much cooler here - hehe):

On the 15th, we took Quin to African Lion Safari while my Mom and both my sisters spent the day with Ryan. The 3 of us had a lot of fun together and it was so good for Quin to have just us to herself for part of the day.

On the 16th, my parents babysat the kids so Jeff and I could go to Odessyo in Toronto (kind of like Cirque du Soliel but with horses) for our anniversary. It was an amazing show and I was biting my lip real hard to keep from crying at the was just such a gorgeous show. Little did I know at the time that just minutes later I would be shedding tears for a different reason. As we were rushing out of the show to get to the car and beat the crowd out of the parking lot Jeff tells me he has a few missed heart literally stopped when he said it was from home. I grabbed my phone and I too had a couple of missed calls. Shaking like a leaf I called home as fast as I could. My Mom told me she thinks Ryan has been having seizures. Poof, "good feelings gone". She told me he'd been having some head bobs (Infantile Spasms alert) and had some weird movements and stiffening of his legs and arms. With feelings of dread in our stomachs we hit the road and of course got stuck in the oh so fun and typical traffic on the Gardner and QEW - I hate both highways and hated them even more on this day!!! When we got home Ryan seemed ok but with everything that had been going on with him lately and all the video's, calls and e-mails I had been sending to the pediatrician and neurologist I'd had enough...we were taking him to the ER!

We checked in and waited and waited (longest I've had to wait in the ER with him)! They finally called his name and took us to a newer area of the ER, one we hadn't been to before. They put us in a nice "little room" with lights that we could actually turn out! It had a reclining chair which Jeff promptly tested out and a nice bed which I stretched out on along side Ryan. As soon as we were comfy a nurse came to get us and told us the doctor on the other side of the ER would be better equipped to deal with the reason we were there for. So we got up and went into the brightly light icky side of the ER and waited some more. A very nice resident came over and took Ryan's medical history and watched him for a while. He was doing some head bobs but at this point the bobs were mostly all with his head falling backwards (not TOO scary). Then the main doctor came this point it was about 9pm and well past Ryan's bedtime. The doctor checked him over and asked some questions then went to go contact the neurologist on call. Not long after he was gone, Ryan's head bobs became much stronger and more frequent and he started making the "IS" face as his head would fall forward (kind of a spaced out what the h*ll just happened scared look). It was the first time I had seen "the look" since last summer when he was first diagnosed. I freaked and told Jeff to go get the doctor quick. The 3 of them came rushing back and watched Ryan. The main doctor said that yes those look like Infantile Spasms head bobs. We were devastated to say the least. I was frantic and with tears welling up I said "Help him!!!"..."What can we do?!?!?". It was so painfully heartbreaking to watch him. Jeff looked like he was about to puke and I was a puddle as we watched this horrific form of epilepsy literally eat away at and destroy our sweet little boy's brain. The neuro on call suggested we up Ryan's Vigabatrin dose from 750mg in the morning to 1,000mgs and keep his PM dose of 750mg the same. She said all the notes and information from our ER visit would be on Ryan's neurologist desk for Monday morning and to call first thing to get an appointment for him. We took all this in and hit the road still not knowing what to think but knowing what we felt...which wasn't a pretty feeling.

This was taken 2 days after we were in the ER:

The next day we upped Ryan's meds and waited... One thing I had forgotten about was how Ryan was when he was first started on Vigabatrin last summer. His sleep instantly went out the window, he was spastically hyper all day and as time went on he became very moody and irritable. Most of those side effects had subsided over time or at least became less of an issue...or maybe it was that we had become so used to them that it was just the "new norm" in our house...not sure! June 17th was the day his meds were upped, within a couple of days Ryan's nights were a disaster...he barely slept...naps weren't much better. On the 20th before things started to get real bad for him he held onto and fed himself a 'veggie straw'...first time he's really actively fed himself and chewed consistently (aside from the piece of cheese he got in his mouth a few weeks ago)!

Within a week he was crying inconsolably and was what I can only describe as psychotic.

This was taken during the peek of his "crazy" time. The video doesn't do it justice and he may just look like he's kind of freaking out. But he's got his jaw clenched so tightly I was fearful he might break it. His hands keep fisting up and he's shaking. He's also making some non-Ryan/crazy noises. It may not look as scary in the person though it was quite terrifying to watch.

Most anti-seizure meds have crazy side effects and Vigabatrin is no exception. Some kids have no problems, some like Ryan get just about every evil side effect the drug has to offer! I had sent video's to his neurologist, who by now had told me that he didn't feel Ryan was experiencing a return of his Infantile Spasms but that he will send him for a 6 hour day time VEEG (video EEG) just to be on the safe side. Wouldn't you know this won't be happening until SEPTEMBER!!! A couple of the video's I had sent were of Ryan completely freaking out. He was so crazy with rage, fear and sadness that I honest to God could not hold him at times..he was out of control. The neuro's thoughts: Oh it's just behavioural. WHATEVER! I don't know how many times I have told these doctor's that I am his mother...I spend 24/7 with him...I know what is normal and what is not. What I am seeing is NOT normal...he is not misbehaving or having a temper tantrum...something is not right!!! I was able to speak to a neurology nurse (not his regular one) and explained to her what was happening with Ryan. She said that if Dr. ___ didn't feel it was spasms or seizures and that Ryan was in so much distress to lower him back down to his regular dose. While I was worried about him seizing I was putting my faith in the doctor's and nurses and lowered his meds. Within about 5 days he was his old self again. The intense and on going crying spells and the crazy psycho fits were gone (behavioural my a** - damn him for not listening to me and believing me). This past Monday night was the first time I had heard him laugh in over 2 weeks. Amazing how such a sweet and beautiful sound can bring a person to tears! The other thing that is helping Ryan feel more comfortable is the addition of Zantac to help with a bit of relux issues and vitamin B6 to help combat the irritability and mood swings caused by his seizure meds.

So painfully sad (this is the face we saw A LOT of during these 2 weeks):

Literally exhausted from crying (and in this he is still crying/moaning):

Finally feeling a bit better and enjoying his guitar app on the iPad:

Where Ryan "went" during those 2 weeks only he will know. I just hope for his sake he never has to go there again!