Saturday, August 31, 2013

Round Four??

I feel like so much has happened since our previous blog entry that I don't feel like it is possible to even put it all into words. We had an overnight EEG that turned into a two night EEG. The results were not easy to read for his doctor with healing and things going on but PJ is having subclinical seizures as well as his other episodes. It is all right sided and isn't spreading to the left which is really good to know. Unfortunately the area that is showing as dysplastic is an area that will impair both his vision and his motor if removed. We are still weaning off of Topomax currently and maybe keppra but it is too dangerous, at this point, to take his clonazepam away.  He has been on it for nearly two years twice a day and taking it away could trigger seizures not related to his condition just purely from the withdraw. His trileptil is slowly on the rise though in hopes, that eventually, it will be his only medication. We talked to his neurosurgeon last week and he feels that the next step is a hemispherectomy for PJ. Our latest date for surgery is October 3 but he is amazing and said that if he can he will do it sooner. I am going through a lot of conflicting emotions regarding this decision, although I know it needs to be done.  I always have said "I'm not worried, I just want him seizure free." Deep down though I feel horribly sickened that we will have a new set of difficulties for PJ to overcome and suddenly all of this has become very very real to me. I am kind of feeling it is a lose lose situation but when thinking of what I would want I would pick better cognition and communication with no or drastically reduced seizures and impaired mobility over good physical mobility with multiple seizures and very impaired cognition and communication. Making the decision for my child though is nothing short of heartbreaking. Of course I am a worrier so I also can't help but worry about the left hemisphere which has always been perfect on tests but that "what if.." Always creeps up on me and gets me wondering if that other side is as good as the tests have shown. Ugh. My husband is so relaxed and together and keeps reminding me that just because PJ has a good day doesn't mean it's gone, and he is right. We were told numerous times that once this type of dysplasia becomes active it doesn't stop...we have always found this to be true even on good days he was having subclinicals and even more unnerving seizures not even readable through the EEGs. It's just tough and has proved to not get any easier on any of us. All we can hope and pray for is a successful surgery with no complications, that he does become seizure free, and that he has a speedy recovery.

Monday, August 19, 2013

Pushing Forward

After speaking with Paul's doctor we are beginning to wean him off of all but, hopefully, one medication. We have upped his trileptil and significantly lowered his Topomax all the others are staying the same for now. We did find out he is having up to 8 seizures a day. All the extreme fits I have seen of him crying in pain that I thought could be pressure is in fact seizures from the motor/sensory area. They are wanting to do an overnight EEG but want to try to get him on one medication first but if things get really out of control we will go in sooner. Along with his fits from his seizures triggering pain he is having tonic clonic appearing seizures every other day (except for this weekend he had one every day). Not sure what the next step is but at this point the medication has made absolutely zero difference. What is most frustrating is knowing there is something causing this yet we still try to medicate the issue...I know we have to try but we know it isn't the answer as it has never previously worked so why in the world would it now?

We also put in to see if PJ could get a wish through the Make a Wish Foundation. All his life at this point has been seizures, tests, medication, surgeries, therapies, and doctors....I would really love to have him have something done for him that is full of fun and far from all the things he has become accustomed to. He needs some fun times with his siblings!

Saturday, August 10, 2013

Spoke Too Soon...

PJ is back to 0 with his awesome record. Had a seizure during nap time. :(

Five Weeks Seizure Free!

We are coming up on a new record!! Post op with his first surgery he went six weeks seizure free so we are almost there. It has been a very nice break for all of us in this household! We did go in a week ago for some concerns regarding hydrocephalus (extra fluid on his brain). They did a haste MRI which is done just as the name says...hastily.  He was swaddled and the MRI took a quick two minutes tops. The results came back with him having extra fluid but not enough to cause concern right now. We go in again here soon for another haste MRI to check on the fluid.  Most importantly what we discovered from that trip from Dr.Oxford (an AMAZING neurosurgery resident) that we were totally informed incorrectly about PJ's EEG. It was, in fact, abnormal but only from the all the empty areas which should be abnormal. He said in the thirty minute read there wasn't anything that seemed seizure related!! Big, HUGE, relief!! So for now, he is good to go! :-D

He also gets his orthotic this coming week to help his left foot. He is a little tight still on that side and is turning his foot in again until it has been worked out...then it straightens out but then the muscles are exhausted and he can't clear his toes from the ground with every step so he is accident prone right now. He is very very smart though and has already learned to compensate for his left "apraxic" really looks to be causing him minimal difficulties, from what we see anyway.

In the speech world PJ has made improvements. He is making tons more sounds. He has "words" but not all are exactly correct words for things.  He can make most single sounds (a,b,d,e,h,I,m,n,o,p,s,t,w, and y) he struggles with a couple of them but can do them. Putting two sounds together is very very tough for him right now. He has a handful of words that are more complex but getting him to say new things is like pulling teeth. We have started using Talk Tablet and it seems to help...he repeats whatever button he pushes (as best as he can) and with every repetition he does sound a bit better.  It has also helped us test his cognition by asking him to find a certain App we could have gotten (Thanks Mom and Dad!!!).

Overall, we couldn't have asked for a better outcome for PJ with everything he has been through. Next hurdle is keeping an eye on his fluid and seeing how his body responds to it...hoping it will start regulating it.