In our discussions with the neurologist it became very clear that despite our best efforts at trying to measure the frequency and duration of his episodes, it is very difficult to distinguish them from “daydreaming”, especially if the duration is quite short. After a lot of questions we decided we would try him on the medication for a couple of months and see if we notice any improvement in his episodes and in his ability to learn. We are going to rely heavily on his preschool team here as they do a great job of keeping track of his seizure frequency and communicating with us what is going on with K at preschool. Currently it is hard to know if his seizures are having any impact on his ability to learn and progress, though if what we have been seeing over the last couple of months is any indication it is fairly safe to say they are not holding him back too much.

As we continue to work on getting his supplement schedule worked out and his deficiencies remedied it will interesting to see if they may have been contributing, or causal, factors to his seizure activity. I have read in this article as well as here that dietary insufficiencies can be causal/mitigating factors in seizures. Now the only problem will be trying to discern which treatment may be causing the desired effect.

K’s bloodwork all looked good too, which is encouraging. Many of the tests are not exactly similar to ones we had done in March but we are able to make some comparisons and to deduce that some of our nutritional treatments are starting to work. That is reassuring given the number of supplements we try to get him to take in a day. I’m sure that will be the subject of another post as we are having his test results and supplement schedule reviewed and I am curious to calculate how much we currently are spending on supplements. I will likely post his schedule and monthly cost breakdown should anyone find this information useful or of interest as they look into this form of treatment.

In hindsight I think this worked out well for all of us. It slowly slipped from our focus as we became committed to waiting and K continued to improve. All of which allowed us to focus on other areas of treatment, while still remaining mindful of his seizure frequency and duration (a big thanks here to his preschool team as they are ever vigilant and always communicate with us anything of concern).

I’m sure some of our initial apprehension was due, in part, to our experience the last time K had a general anaesthetic. The whole ordeal was exhausting and very traumatic for him, and us, and we did not relish revisiting the whole experience. I’m quite certain that all of this was weighing heavily on Tracy in the days prior to our visit as she began to feel physically ill as the date got closer. As usual though she got through it and provided K with stability and good spirits as is her way.

Initially the day at the hospital started off OK. Though K was not thrilled to be there he got to play with some toys (thank-you Thomas the tank engine) and he easily took the sedative prior to them coming to take us the the MRI suite. He began to get somewhat more nervous as we made our way down the elevator and the various hallways to get to the MR and all the while commented that he “wanted down”. Once at the suite they were not quite ready for him and we tried to calm and distract him with toys all the while cognizant of the fact that he knew what was coming. His past experiences had not been forgotten despite being over 18 months previous. As I walked with him into the MR suite where the induction was to take place he grabbed at the door frame to hold himself back and demonstrate his objection to what was coming. It is difficult to describe how it feels as a parent to hold your child and re-assure them, all the while knowing that what is going on around them they find terrifying. As they look to you to deliver them from the situation, and instead you are instrumental in what is happening to them. It feels, in a word, awful and akin to betrayal of someone so loved and cherished.

What followed was the uneasy waiting outside as the doctors, nurses, and imaging technologists did what needed to be done. It was once this phase was complete that we started to become very frustrated with the process and some of the hospital staff. As we followed our still sleeping son from the MRI to the elevator I tried to inform the anaesthetist and nurse of our past experiences of what happens when K wakes from anaesthesia. He becomes very distraught and his only response is to try to get away from the situation his finds himself in and all the strangers around him. He pulls out his IV, screams and cries and can be somewhat combative (not to be hurtful but from being unbelievably scared). The last time we were in the hospital we were called into the recovery room twice to try to help calm him, and another time they let him wake up in a more secluded, quiet place with us around him. Suffice it to say our concerns fell on deaf ears as they whisked him into the elevator, told us we could not follow them, and rolled him off to the recovery room. Tracy and I quickly went up the stairs and followed along behind him, cursing the arrogance and lack of compassion the anaesthetist was demonstrating, and watched as he rolled into the restricted recovery area.

As we waited in the pediatric area we again expressed our concerns to the nursing staff there and try as they might they could not convince the recovery staff, likely under orders from the anaesthetist, to allow at least one of us to be present when he woke up. I did not even have time to start reading the magazine I had picked up to distract myself when I heard the phone ring, a reference to K, and began to stand up. One of the nurses told us he was awake, distraught, and we needed to go the the recovery area; talk about deja vu. We met a nurse in the corridor just outside of recovery moving towards us with K fighting and crying loudly. The recovery nurse had a good hold on him so he would not hurt himself trying to get down and so would not hand him to me so we tried to calm and re-assure him as we moved quickly down the hallway and into the waiting pediatric ward.

Once there Tracy took him and we began our 45 minute “work out” of trying to get him to calm down. He was beside himself. Tracy tried to hold him, “I want down” is all he kept repeating as he squirmed and fought to get free. I started a movie attempting to distract him, dimmed the lights, and drew the curtains in an attempt to help him calm down. In fairly short order I took my turn, as nothing will tire you out more than an aggravated, squirmy 4 year old, but to little avail. He would have small bouts of calm but they merely served to help him catch his breath for his next attempt to get away. In the end it took 45 minutes to get him settled and ultimately we owe that to… Thomas the tank engine!

K so badly wanted to go back and play with the train track and Thomas that the ward had that we were able to reason with him. We told him that he had to calm down before he could play with the train and that seemed to get his attention. After some more time just sitting and watching the movie and getting him dressed we moved to the play room.

In the end we got him to leave the trains behind and headed home where he settled in nicely and was back to his regular self by the end of the day, but what a day!!

I like to think that had our opinions and past experience not been minimized by some of the hospital staff, the entire experience, though unlikely to have been “pleasant”, would not have been so traumatic for K. I find it incredibly hard to believe that a pediatric facility that is dealing with a special needs child (and we were very open about this and it was right there on his chart) could not have taken steps to have made this experience end differently.

It is our intention not to let this pass without drawing some attention to it within the hospital. Hopefully we can help prevent it from happening again, or at least minimize the chances and the unnecessary trauma.