Before Xander's surgery we all want to baseline his current functional levels.

To that end he went in for two mornings of Neuropsych testing.  This will be repeated some time after the surgery, probably before school starts, to see if he is better, worse, or the same after the surgery.

He will also be going through OT (Occupational Therapy) & PT (Physical Therapy) testing as well.

June is one busy month.  Mom is going to need a vacation after this summer!

What to do?  One of the hardest questions to answer even if you have many options.

We gathered Epilepsy/Neurosurgery, Neurology and Oncology in one room today to discuss Xander's options, going forward to help curb his seizures.

The meeting came on a timely day in that Xander had a particularly rough seizure today, at school, that resulted in him pulling his desk on top of him, when he slipped off his chair to the floor.  By the time the nurse rushed over Xander was up and coherent and told the nurse, "He was O.K. and she could leave".

We discussed the options of Surgery, Medication, VNS (Vagus Nerve Stimulation) and alternative therapies.  All three parties unanimously recommended the surgery.  The seizures are local to where his tumour was, and the EEGs show a constant buzz from the area.  It will be fairly easy to map out the anomalous tissue when the surgeons are in.  There is a 50% chance he can be seizure free, and get rid of the background 'noise' he is currently continuously experiencing.  There is an 80% change of reduced seizures.  Although there are all the downfalls of the procedure itself, as well as a 5% chance of increased weakness on his left hand side, considering the location of the surgery.

Medication is the option we are on right now.  It does not require surgery, but does require the three medications (Lamictal, Keppra & Trileptol) he is currently on at fairly significant dosages.  He will also be increasing the Lamictal slightly since his last blood tests showed an insufficient level for his weight.  The downfall is that it impacts his demeanour and energy levels.  The meds could potentially have increasing side effects, like liver trouble, with prolonged usage.  Medication would be constant throughout the surgical option, but we should be able to bring it down, and possibly eliminate it some months after the surgery.

The other issue with medication is that it is not eliminating his seizures.  So the seizures continue and so continue to affect the brain in negative ways.  The longer this continues the stronger the negative associations will remain.

We asked about VNS, but there is limited success at this facility.  Only 5% cure and some reduction.  Although no major surgery, and the effect is localised, not body wide as medication is.

The we talked about any other possibilities and came up with Diet, Acupuncture, Omega 3 Therapy, Chinese Herbs and doing nothing which are all of limited success.

So with that we have tentatively picked Surgery as the next step. We have one of the very best Pediatric Epileptic Neurosurgeons around and a patient with a similar profile to Xander's has just had the procedure and is doing well.    It is still not a choice we are taking lightly, by any means.

After Xander's EEG the first department to call to set up an appointment was Neurosurgery, not Neurology as we had expected.  This created a bit of anxiety but we went in to see what was going on.

We met with the Directory of Epilepsy Surgery, who is also an Attending of Neurologial Surgery.  Hmmm.

We discussed the options that Xander has in front of him considering that he is still having seizures even though he is on a ton of anti seizure medication. 

The results from the EEGs clearly indicate activity from the tumour site.  The current thinking is that is may be an area of the brain that was seperated during by the tumour and the sugery and is continuing to fire as if it was connected.

There is a 50/50 chance that if Xander has another surgery that they can reduce  or eliminate the seizures.  That would be great, however if it does not work, then we are back at the beginning with much pain behind us.  Tough choices to be sure.

We asked for Neurosurgery, Neurology and Oncology to schedule meeting with us, at the same time, so we can map out the best path for Xander.  We are also trying to get Neurology to reduce some of his current medication and see what other options there are while we wait.

Xander went in today for another (short) EEG.

Xander is now up to theapeutic levels on all of his anti-seizure meds: Trileptol, Keppra and (finally) Lamictal (Lamotrigine).  That's great since now we should be able to reduce some of the Trileptol or Keppra dosages.  The only issue is that Xander is still having seizures.  Which is unfortunate and very frustrating.

So Neurology wanted to see what was going on so Xander and Mom went in to get another reading.  Xander had two seizures before he left for the hospital (he and Mom were up since 3:30am, mind you) and 'luckily' had one during the procedure. 

Xander then went to give some blood for labs, from which they took six whole vials of blood!  Xander didn't want to be there but he toughed it out.

Next step will be to meet with Neurology to see the results of the EEG and then figure out what to do about the medication dosages and his continuing seizure activity.

We need to reduce the dosages since they are affecting his energy levels and demeanor.  Having to take 8 pills twice a day is asking a lot from a young boy.

The family went to Children's to talk to Xander's Neurologist to review his current status and see what the next steps are.

It was odd since we had not received a paper copy of the upcoming appointment in the mail.  We only had warning that there was a pending appointment by Children's automated phone appointment reminder system.  So it was doubly surprising when we learned we had both Neurosurgery and Neurology appointments that day.  Luckily they were scheduled back-to-back.

So we went in to see Xander's Neurosurgeon about how things were going and what long terms steps could be taken.  We reviewed the wonderful news that Xander has been seizure free (knock on wood) for at least 10 days.  We reviewed the medication route for treatment and what may happen if that turns out not to be a long term solution.  We talked about surgery and when that may be appropriate.  Luckily we all agreed that was the last resort, but that it should be 'relatively' straight forward since it is localised and the equipment is there to make sure that only affected areas would get removed.

Then we switched gears to Xander's Neurologist.  We reviewed the current situation and where we will be going.  Since Xander's seizures have quieced we maintained his current levels of medication, especially of the Lamictal.  This, however, is not a good long term solution since he is on 3 meds and they are affecting his demeanour and his energy levels.  So we will be continuing raising the levels of the Lamictal until it is up to therapeutic levels (50mg) and then, as long as Xander is still without siezures, will start reducing the levels of the other meds.

Then Xander had to go get a blood test to see just what the levels of the meds in the bloodstream are.  He wasn't too excited about getting it done, but stolidly went through the procedure none the less.

Since we started raising the Lamictal levels Xander has been getting more tired and at times very cranky.  You can tell it is the medication talking, which still does not help in some situations.  The tiredness seems to kick in about 1/2 hour after taking his meds and then he needs to have a nap, or just plain go to sleep.

A period of time has passed since we had initiated a review of Xander's classification for his I.E.P.  In the meanwhile personnel in the district have either reviewed Xander's tests from Children's (Neurological, Psychological, Medical, Audiological, Occupational and Physical) or conducted their own tests.  Today we reviewed the results with the testing team and heard the recommendation they will be submitting to the I.E.P. team.

As with anything formal this is not an expeditious process.  Even now, we are only nearing the middle of it.

The results showed that his 'Communication only' status was not sufficient for him to get the services he needs to succeed in the school system.  After review the addition of Occupational and Physical therapy were added as well as Auditory (FM System (still under evaluation)) would help to complement his Speech therapy.  This bumped him up to a "Health issue' status, which we believe realistically corresponds to the rigours he went through from his cancer and its subsequent treatment.

Now these results go to the I.E.P. team and the Special Needs coordinator to see about amending Xander's I.E.P. and then scheduling and 'placement' issues.  We are positive about the additional help Xander will get, to help him succeed.  We are also leery about broad implications of words like 'placement'.   Scheduling is also an issue since, generally, the district takes the students out of class to receive these services.  He only goes a half day so would miss out on some significant class time.  This would also follow when he starts attending grade school classes.

We hope this will help Xander this year in that it is now half over and we are just getting to a more holistic plan to help him succeed at school in general.

Xander's school district had brought in a FM System for him/them to evaluate.

He went in early to have it fitted by the district Audiologist.  The Audiologist then gave Xander, Mom and Xander's teacher some instruction on how to use it.

The end of the day seemed to bring some positive results. 

During the day Xander had to go to the bathroom but the system was still transmitting so he was able to hear his teacher clearly.  It must have been a little concerning to him though, that she seemed to be in the bathroom with him in that he wanted to remove it once he got back in class.  Luckily Xander's teacher let him know that it was necessary and he kept it in.

There was also a time that the teacher turned it off while she was speaking to another person in the class.  Immediately Xander put up his hand and exclaimed that he could no longer hear her.  That in itself was a large validation of the effectiveness of the system.

We hope this little piece of technology will help Xander in his classroom activities and help his teacher to be able to communicate more clearly with him.