Thursday Jan. 17th, 2008 We started his medication at the initial starting dose of 50mg once daily. It has only been a few days thus far and the only side effects to note are some tiredness shortly after administering him his dose, though I think we may have ameliorated this by giving K his B12 nasal spray shortly after and this seems to keep him alert and able to focus during his intervention sessions, and some extra “clingyness”. Tracy and I think this may be the result of just needing some extra re-assurance if the drugs are making him feel somewhat strange mentally. We are hoping that this will pass. He does seem to have to work somewhat harder with his speech as he seems to elongate some of his words while talking. The only other peculiarity we have seen is some squinting or like K is trying consciously to blink and therefore it stands out more than normal blinking.It is unfortunate that being 4, and on the spectrum, it can be hard to tell people how things make you feel as many of those ideas are somewhat abstract and require higher levels of communication.

We are going to start gradually increasing his dose so I will update this post as we progress and hopefully I can capture what is going on, any side-effects, and how K is reacting.

Jan 22nd, 2008 and we have increased K to the next dosage level. He is now receiving 5omg twice daily. Again we noticed some additional tiredness and the “blinkiness” continues but not as pronounced. Except for an episode on the day we started treatment we have not witnessed or heard from his preschool that he has been having anymore seizures.

Jan 25th, 2008 and we had a meeting with K’s neurologist today. We talked about alot of things and how to proceed, much of the conversation revolved around her retiring and how we proceed from this point on. K seems to be having a much more difficult time controlling himself and many very simple things seem to be more than he can stand and result in tears, hopefully this will diminish. One of our topics of conversation was if his behaviour is being negatively affected and his performance in other areas is not showing significant improvement then perhaps the medication is not worth the additional stress on everyone, time will tell. Of note is the fact that he seems to be more echolalic lately, this has always been one of his “stims”, but it seems to be worse now as he continues to recite parts of his most recently favourite shows. This too may be a product of being more tired than normal and an attempt to keep himself busy and occupied instead of succumbing to being tired; we have seen this before as well, but hopefully it too will be short lived.

Jan 28th, 2008 K is now taking 50mg 3 times a day (morning, noon, and before bed) to manage his seizure activity during the waking hours and at this point it is not looking good. We have committed to ourselves, the neurologist, and K that we will try for 1 month to give us a good indication of how it will manage his seizures and impact his behaviour. If the last couple of days is any indication we may be in for a long 30 days! K seems to be even more out of sorts, everything that does not go his way is a MAJOR ordeal resulting in tears and he seems to very much just want to watch tv. We are not sure if this is just a result of the medication making him tired, which we know it does from what we saw yesterday (K almost fell asleep in his sensory swing early in the afternoon, which never happens normally, and he asked to go to bed early and fell asleep almost instantly) or if it is impacting his behaviour such that it is very hard for him to cope. The other change of note is the fact that unless he is watching tv he has a difficult time being still (we are limiting his B12 nasal spray because that can exacerbate his “hyper” activity level). He has always been busy, but not to the point of being hyper or manic, but lately he even seems to have a difficult time sitting in his “happy spot” at the dinner table. Again, we are not sure if this is another effect of the medication or if it is from it causing him to feel tired and the perpetual motion is how he stays awake. The latter would be very in keeping with what we know of our kids. K’s big sister does the same thing still, she busies herself with anything and everything to keep from succumbing to sleep. The outcome of which is usually very similar to what we are seeing with K; the excessive activity and the over-emotional behaviour. Hopefully as the dosage normalizes and he becomes accustomed to the medication these new personality traits will diminish to the point of being absent.

The only other thing of note in this area would be the change in his homeopathic medicine at the same time as the introduction of the anti-seizure meds. We are going to contact his naturopath to see if this is likely and adjust his remedies accordingly to help manage the behaviours. We did see similar behaviour in the past with a change in his homeopathic remedies so that may be a contributing factor.

Jan 31, 2008 K seems to be tolerating the medication much better. He is on 50mg three times a day and seems to be adjusting to its influences on him. The bad behaviour has decreased dramatically and he is almost back to his normal self. He does still seem to be tired and this has an impact on his mood and behaviour but usually just in ways that I have described above in that he becomes busier than usual and if we are especially lucky he does it all with a mischievious look in his eyes. That remark should not be viewed as fascetious but one of happiness as it shows he is doing things in a calculating way that he has deduced will elicit some response, in other words it would appear that he using some social context for his behaviour as this is a type of interaction with his mom and I. Atleast that is what I try to remind myself when I tell him not to keep doing certain things that he knows full well he is not supposed to do.

His preschool is so great at monitoring his behaviour and watching for any signs of his seizures and to date we have been episode free since shortly after starting the medication and we have not noticed anything here at home. The “blinkiness” was noted on the 29th but not today so that may be a transient effect or perhaps it is a result of some other aspect of the medication. He seems to be sleeping better as well (me touching wood) and has not been waking in the night as he sometimes does, especially this time of year, and has been very easy to get to sleep at night. Perhaps we should consider an adjustment to his bed time to ensure that he is getting enough sleep and is not becoming over-tired as that usually leads to episodes of night terrors. Sleep is going to be the subject of another post as I try to remember and document our 4 very difficult months last year when K did not sleep well at all and some of our strategies for helping improve the situation as well as what we experienced. I found an article recently that has some resources in this area and we have some information in the documents section on the main page, as well that have information on sleep issues in autistic kids, if you can’t find what you are looking for, try the contact us link and we would be happy to direct you to the information we have.

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.