Tuesday, December 18, 2007

I keep meaning to post an update about the MRI experience but somehow life seems to get in the way and I get dragged away from the computer, leaving a fragment of an entry that invariably gets deleted a short time later. I have however, finished moving the remainder of this blog from lj. It's taken a while but I believe that it is finally here in its entirety.

The MRI went well. I am thinking that they don't get too many children in that particular department and Tatyanna was loaded up with stickers and sparkly plastic bracelets before the procedure even started. Watching them set up was also interesting as anything metal couldn't be anywhere near the MRI machine due to the fact that it's pretty much a giant magnet. The whole room was a flurry of activity as various anaesthetic equipment parts were traded off for different pieces that were made from either aluminum or plastic. Longer tubing had to be found which sparked a debate as the MRI department felt that anesthesiology should have said tubing and anesthesiology was positive that MRI should have it. I believe that it was eventually found in a completely unrelated department. The paper work portion was also interesting and Trent and I kept our selves amused by answering the various questions on Tatyanna's behalf.....any tattooes, shrapnel, piercings of the illicit nature and the like. By the time that things were ready to go, Tatyanna was so bored with sitting in the "staging" area that she was only too happy to go with a random nurse to "check out something new". I must admit that I do feel a pang of guilt over this part and I try not to think about how it was for her when they put her out because in the end, there were no lasting ill effects. With Tatyanna it is really difficult to determine how much she processes and how much she remembers. She doesn't seem scarred or unduly traumatized by the ordeal so I'll go with that.

The whole procedure lasted only 45 minutes or so. Just long enough for Trent and I to run and grab a much needed caffeine fix and get back to the waiting area. We heard her howling before we were finished the coffee and as uncomfortable as it is listening to your child cry and not being able to do anything about it, it was kind of reassuring knowing that she came out of it OK. I have watched one too many House episodes to take that fact for granted.

Once we left the MRI department she spent another hour in recovery, was given several more stickers and bracelets and sent to pediatrics for more monitoring. After a 45 minute sleep, she woke up as if nothing had happened and demanded to go to the mall and eat fries.


Fast forward one week......the results came in and were completely normal. This has surprised pretty much all the professionals that have been involved with Tatyanna thus far. Nobody was expecting normal. While the results are reassuring in that we know there are no tumours or structural abnormalities, it leaves a tonne of questions as to what exactly is going on.

Monday, November 5, 2007

".....well, she can be an extremely overwhelming sort of child...."

Hmm, you don't say? This was from a conversation with Tatyanna's occupational therapist, who I'm positive might feel completely in over her head most of the time but does an amazingly remarkable job during their hour together nonetheless. The appointment with the developmental pediatrician was considerably less productive. She started the assessment using all the standardized method of testing and within half an hour could go no farther. She tried doing the usual "copy my drawing" test to which Yanna's response was "draw a horse!!!" she moved on to the block test. Tatyanna felt that she should then make a horse from the blocks. Within half an hour we had to remove Yanna from the room as she was pretty much climbing the walls. The rest of the appointment was spent conducting a patient history. At the end, the ped. announced that she wasn't really sure what was going on as she couldn't fully conduct an assessment and that she wasn't willing to officially diagnose Tatyanna with anything but would refer her to a neurologist, children's special services and the pediatric autism organization. It was entirely frustrating and Trent and I left the office wondering if perhaps she had obtained her credentials from one of those online study institutions. I get a lot of spam in my one discussion forum that promise a PhD in 3 months or your money back. Perhaps those people really can get jobs!!

Ironically, she is closer to being like the old Tatyanna that it doesn't bother me a bit. It's funny how your perspective can change so drastically in such a short time. I would much rather have her tearing apart the house, emptying the pantry and antagonizing her siblings than have her barely able to function as a result of continual seizures and side effects from medication that just isn't working. I realize that this reprieve may be short lived as medications but I will take it and enjoy it.

Wednesday, August 1, 2007

Another day, another trip to the pediatrician, another medication to try.

Seizure count: lost track after 40 both today and yesterday. *sigh*

Monday, July 9, 2007

Since diagnoses are kind of like Lay's potato chips, in that you can never have just one, Yanna's recent trip to the pediatrician yielded us with another diagnosis....epilepsy. The EEG report indicated that she has been suffering from left side posterior temporal and occipital complex partial seizures. Try saying that one 5 times quickly. While it wasn't exactly what we were hoping to hear, it didn't come as a surprise either. And, because seizuring brains are not happy brains, she was given a prescription for Tegretol in an attempt to control the irregular electrical activity. The pediatrician admitted that he wasn't entirely thrilled with this diagnosis and felt that she could potentially be difficult to treat. Not exactly words every mom hopes to hear. Given the nature of the seizure activity and the fact that they are occurring in two different lobes of her brain, the chances of being able to control them in the long term with just one medication is extremely small. We are probably looking at using a combination of ever changing drugs to keep the seizures at bay. It's funny, in the doctor's office, I went into my old "nursing student mode". I asked my questions, got the treatment plan and left the office planning to consult with Dr. Google and numerous other more reliable medical sources once I arrived home. There was no emotional response. It was what it was...could be better could be worse. It wasn't until that evening when I picked up the bottle filled with tiny white pills that the impact of everything really hit. My hands were literally shaking as I handed her the first of what will be many and encouraged her to chew it up in a voice that overly cheerful. Normally I try to treat things as naturally as possible and would prefer to seek the advise of a homeopath before a standard western physician. But this time, I feel that I have no real choice. There are no effective natural treatments. There is no "wait and see". There are no herbal remedies with a minimum of side effects. I have no choice but to take my daughter and embark on a sea of chemical cocktails and hope for the best. The thing that pains me the most is that this crappy alternative is the best I can offer my little girl.

Tuesday, June 26, 2007

I'm normally a fairly relaxed, no panic sort of person but I have to admit that the sound of Trent thumping down the stairs followed by the words, "OMG I think there's something really wrong with yanna!!!" did incite something that could be called panic. It was that sort of icy feeling that washes over you followed by the sensation that your stomach has hit the floor and your heart is somewhere in the vicinity of your throat. It's highly unpleasant. But as a mom of 4, I have learned that no matter how anxious you feel, it's usually counter-productive to allow the kids to become aware of said emotions. I calmly turned around and noticed immediately on first glance that yes, there was something very wrong. Yanna's entire left side was completley paralyzed. Fighting the urge to panic suddenly becomes a little more difficult when you're wondering if your 4 year has had a stroke. We quickly got everyone loaded into the truck to make the 20 minute drive to the ER. Yanna, oddly was completely oblivious to the fact that her body had suddenly declared mutiny on her and kept asking (in slurred speech eerily reminiscent of T's grandma who is suffering from ALS) if we could "Go park!!!" and "Get icecream!!!" She also wondered if we could go to town and buy horses. The potential severity of the situation was completely lost on her and she was just happy to be going on a truck ride to town. It was kind of funny really. Once at the hospital we were seen by several doctors and nurses. During the time there she gradually regained all her senses/abilities and by the time her own pediatrician came down, she was attempting to swing tarzan like from the curtains. By the end of the morning it was determined that this just another complex migraine spell. Apparently complex migraines can also cause hemiparesis. I must say that for once I am completely relieved with a rather anti-climactic ending.

Friday, June 15, 2007

like trying to put a billy goat into a shopping bag

I should have know that it wasn't going to work. After a week of increasing seizure activity, we finally got a call from the EEG department. The lady on the phone suggested that they like to schedule the pre-school appointments for the afternoon because that is when they nap. Umm....right. I tried to explain to her that my daughter does not sleep and runs around like a weasel on speed until her battery dies around midnight. The receptionist did not believe me, brushed off my concerns with a "I'm sure it will be fine, we'll see what we can do." and scheduled the appointment for 2:00. We showed up at the hospital at 1:45 as suggested and proceeded to wait for 45 minutes. As the seconds ticked by you could see Yanna start to unravel. The novelty of sitting on each and every chair in the waiting area only lasts for so long. By the time we finally got called in I was peeling her off the walls and dragging out of the ornamental trees. It wasn't pretty. Once in the appropriate room, I was told that she would have to lay still for 25 minutes without moving. I think I might have laughed at the guy at this point. He, being the astute, EEG tech quickly realized that this really wasn't going to work. It might have been the fact that Yanna was trying to jump off the bed yelling "I NO SLEEP!!!!!" but I could be wrong. Needless to say, we had to come up with plan B. "We deal with "those types' of kids lots" he said (which didn't win him point in my books) "and it never works with "them". " He then apologized that they had even tried to set up the appointment for 2:00 at all. The plan B is that we reschedule for tuesday at 9 am, keep her up as late as possible and then wake her up at 4am. Hopefully by 9:00 she will be tired and more receptive to the mild sedative they are allowed to give. Again, I am skeptical as nothing 'mild" seems to knock her out. Not even the prescription hydroxyzine slows her down. The energizer bunny has nothing on my girl. It should be interesting to see how this works.

Saturday, June 9, 2007

"First day on your new legs?" The comment should have been harmelss enough but for some reason tonight it stung. I walked over to my little girl, helped her up and asked if she was ok. It was the same as so many times on so many days. "I ok" was her answer. The same as always. But she's not ok and it breaks my heart that I can't fix her, that I can't make things better. Some days she falls alot, some days not so much. We think that she's having simple partial seizures but until the EEG no one really knows. I see it in her eyes on the bad days. She'll hold my hand more, and refuse to go up or down the stairs without help. A fall down the hard wooden staircase taught her that lesson. It's interesting how she would quite happily run into traffic without pause but understands the danger of an innocuous set of stairs.