It’s finally time for an update! I have taken a
break from this blog for quite awhile now, but now seems like a good
time to re-inform everyone on how Oliver is doing.
Since his gigantic, horrible status seizure that
happened back in March, a few things have changed. He went to see the
neurologist a week after the seizure for a regular appointment, and she
basically said that she wasn’t surprised that
he had such a horrible seizure since 1) his brain wave patterns are so
abnormal, and 2) he had WAAAAAY outgrown his dose of Lamictal. When he
went off Topamax, his appetite increased pretty substantially (a side
effect of Topamax is appetite suppression),
and he gained a bunch of weight. She sent us home with a higher dose
of Lamictal. I do have to say that it was a little unnerving that
Oliver’s potentially life-threatening seizure wasn’t more concerning to
the neurologists. We titrated up the Lamictal
again with no problem, except for worry that he would have a fever that
would spike another massive seizure before we were up to the full
dose.
About a month ago, we noticed Oliver having some
strange episodes again. He gets a semi-strange expression on his face,
and then his mouth twitches, like a one-sided smile. His breathing
sounds strange, almost as if he is snoring, and
sometimes his hands or face tremble slightly. These episodes usually
last for only a few seconds. He has been having these episodes
increasingly often; before, he would have a couple in a week, and now he
is having several per day. I emailed the doctor
2 weeks ago; she increased his Lamictal again, but it isn’t helping.
It seems like a new type of seizure that the Lamictal doesn’t control. I
emailed the neurologist again a few days ago that the increased dose
hasn’t helped and that the seizures are getting
worse. I just got a message from a nurse in the neurology department that said she wanted to talk to me about the new treatment plan for Oliver. It's frustrating-- my phone didn't ring, so I didn't know they even called. Now it's too late-- I can't call back until tomorrow... Argh! Jadey wants to start Oliver on
Keppra, a new medication, in addition to keeping him on Lamictal. I’m
not sure what I want to do; the Keppra idea sounds like a good
possibility, but I want to see what thoughts the neurologist
has, too. Part of me wants to take him in for another EEG, but another
part of me is still traumatized by our last experiences at the hospital
and wants to stay away. I wish good answers existed for the questions
we have.
Developmentally, Oliver is doing ok. He is still
really delayed in all areas, but he is making progress and is learning
new things. He is still using a picture communication system to request
things, which is going really well! He still
can’t talk, although he does make some vocalizations. He is constantly
learning to understand new words and phrases, which is really fun for
the speech therapist side of me to see! He still has a lot of trouble
using his hands, and he has some social delays
as well. Jadey and I went back and forth about taking him in for an
autism evaluation, but we decided to wait for now. Oliver already has a
diagnosis that will qualify him for every service he needs, and he has a
lot of strengths that may not fit so well
with a diagnosis of autism. I am afraid that if we do get him
diagnosed, teachers and therapists may overlook those areas of strength
and only see the diagnosis. I think when he is around 6 or 7 we will
look into getting some thorough diagnostic testing.
We are gearing up for the tuberous sclerosis
fundraising walk, which is coming up in less than 2 weeks! Jadey and I
would love for anyone and everyone to come out and join us. We also
appreciate any donations on our team’s fundraising
page, although please don’t feel pressured to donate! Here is a link to our team page:
http://my.e2rm.com/teamPage.aspx?teamID=271107&langPref=en-CA&Referrer=http%3a%2f%2fecommunity.tsalliance.org%2fPage.aspx%3fpid%3d542%26srcid%3d544
If you are interested in donating to medical research, though, TS research is a great option-- this research also provides knowledge into treatment for several other diseases, including autism, cancer, and diabetes. It’s pretty amazing. I want to do a blog post about the importance of medical research one of these days/months/years… It’s unbelievable how many more treatment options there are now that weren’t around 20 or 30 years ago, and it’s all thanks to medical research.
UPDATE: I just talked to the nurse this morning, and they want to increase his Lamictal again... I'm not all that excited about this option. It looks like it will be another 2 to 3 weeks of this until we know if this new change is or isn't going to help.
