Like living with a drug addict

Sam coming off this Keppra is not pretty. He has his highs and lows. The doctor explained it to us on Wed that when he is 'high' it is his brain searching for the drug in his system and then when it can't find it he crashes... just like someone on drugs. He has good moments and bad ones. He is up and down. He has rational thots and then the irrational ones follow. He is working hard to not lash out but there are times where he does.

So yesterday morning Sam woke up and wanted to go to school - he said to work on school work but I think part of it was to get away from here for a bit - which I dont blame him. So we let him go. (mind you I was worried about it because of the highs and subsequent crashes) BUT (yes that is a big but) we are trying to let him have a normal life ...and normal teens go to school... so we let him go.

I called the school ahead of time to let them know what was happening and spoke directly to his teacher. "he is going to probably on make it to noon. If he starts going really fast, touching everything and talking amile a minute he is on a high. He will crash and he will be very hard to understand, he will be tired, unco-ordinated and just generally "out of it" He also has woods at second period so please let the woods teacher know that he is NOT to operate any machines'. The teacher indicated that he understood and would look after him. (I also left a message for the woods teacher with this same info)

Well Sam got to school and didnt know what day it was (on the timetable -- and due to a mix probbly of the drugs, head injury and most likely pride didnt ask anyone) so he went to work in the library. This is where the teacher found him, got some work from him and left him for the rest of the morning.... Joshua went to  Sam's classroom to check on Sam before lunch to see how he was feeling and to se if he wanted to go home or not...
... there was no Sam  and Josh was told by the teacher that he had left him in the library this morning. SO Josh went looking for him, only to find the library empty. After a quick search of his usual areas of sitting in the school, Josh couldnt find Sam and so he texted me this info. I told him to have Sam paged by the office, only to have no Sam turn up.  Josh was worried and now so were we. We got a text he was with his ex gf but that quite a few teachers had seen him and thot he looked glassy eyed and not 'with it'. The janitor had said he had seen him and Sam was talking but not making any sense as he was leaving the school...
Josh by this time had called me and I left to go and help find Sam, the school called the ex gf parents to get them to call her to make sure that they came back to school (she told Sam she had a spare but was supposed to be in classes) She told her mom  that Sam was not with her! This caused the school to have to call the RCMP and report him missing because of the meds issues.... Sam said he didnt know that someone was looking for him and he didnt know what time it was (he doesnt wear a watch).
Josh then went with some teachers and other students looking for Sam on and around the school grounds to see if he had seized somewhere and was on the ground.
By this time Sam was crashed for quite a while and starting to go into survival mode. He was wild and glassy eyed, staggering, incoherent, hot and tired. We still didnt know that Sam had been with the ex gf,  so we started to question where he had been... and he told us "he wanted to talk with her and since she had a spare and he didnt have any classes, he didnt think..." I know he just wanted to be with someone to listen to his problems, and she probably wanted the same thing too but it was gone about in a totally wrong way.  (it was then that they asked me who does Sam talk to about things!?!?! OMG what the hell do you people think I have been trying to do the last few years!? For starters he was supposed to be talking with the school counsellor but the counsellor was always too busy!)
Sam told me when we left the school that she told him to tell a story to the school and us about why they were where they were and he couldnt remember what she had told him to say... he was confused then about what all had happened (he has a hard time with remembering the truth and what his day is forget abouat adding lies to try to remember)
Through all this Josh was in full gear panic. When he had called me he was close to tears, when I saw him at school he was white as a sheet. I told the office that when I took Sam home that I was also taking Joshua and they agreed it would be OK. Josh proceeded to tell me lots of 'behind the scenes' stuff that occurred thru this all on our ride back home. It wasnt pretty.
Sam is home now and his locker has been cleaned out at school and he will finish out this year at home and until these drugs are sorted out with the doctors.

Now the part about it all that really ticks me off is that when we got Sam back to the school, the onus of all of this was put on Sam.... not the teacher who was supposed to be helping, not the school for not informing staff of what was happening (I am sure the ex gf will get a helping of blame from the school) but it was all on Sam and what he could have done to have not gotten into this mess in the first place...
I could see it if he was a normal teenager, I could see it if I had not given them a heads up about this, but i HAD informed the school of what would happen and how to take steps to take precautions.
I know that some people will put the blame on me: "well why did you let him go to school if he is like this?" my answer is because I am damned if I do and damned if I don't. We are constantly being told by everyone to let him be a kid! We DO let him be a kid, we ENCOURAGE him to be a kid, we WORK HARD to make sure he is living as normal as possible life. Going to school IS normal (the school told us to make sure that when he had days of feeling like going to school let him go...)
...so we let him go.
I take part of the blame because I have that catch .22 thing going on in my head about letting him be a normal teen .... but he is not a normal teen in some respect.
Sam takes part of the blame because he was acting like a normal teen
but what blame is the school taking for essentially 'losing' our kid at school?
What blame is the ex taking when she took him off of school property in the condition he was in?
ast night our phone didnt ring. There were no follow up calls from the school board, form the RCMP, the ex's parents, nothing.
So I am guessing Sam is taking the brunt of it all ... and all I want to say to them all is "where have you all been the last year? what have I been telling you? Did ANYONE listen when I called this morning and explained what to watch for?"

Now to top it all off, when they asked about who does Sam talk with I had to explain about our trips to Winnipeg to the psychologist and our trying to find help but not finding any. I am still waiting for a call back from the Health Unit from a counsellor there that was trying to set us up with a psychologist near by but I have not heard from her (and the health units phones are down right now -- sigh)So I called him myself and left a message and have not heard back from him either. Our psychologist in Winnipeg is going on Mat. leave in mid June... and the psychologist in Neepawa is retiring... so tell me where in the hell does that leave us!? I am busting my butt trying to find us help (as a family and as individuals) and everyone says "oh not here! go to......" sigh
I am tired and left feeling very raw thru this all...

so not a good day...

It sure feels lately like we have ben having more ‘off’ days than ‘on’... and not just with Sam. 

Everyone seems to be out of sorts or just not themselves... and I for one am exhausted. 

Between the medicine side effects and the brain injuries causing issues to teen drama and ‘relationships’  to medical problems am ready to jump ship and head for shore.

Yesterday I took Isaac to have his hearing tested and it seems that (by the test results anyway) his hearing is that of a 90yr old man in one ear. 

Isaac is 14... this is not good.

We are going to be going to another audiologist and according to the man we spoke to yesterday, he assumes it will be sooner rather than later due to his age and the test results. So off we will go to more appointments with specialists.

Sam has been forgetting meds,  missing classes at school (and not while he has been at home) and then this morning when we called him on staying up late texting on his iPod (which is NOT supposed to be in his room at night) he decided to go back to bed this morning and then miss school some more. He says we treat him like a child and when we give him the chance to act mature, he drops the ball and blames us. We are on a vicious treadmill right now with his attitudes. We are basically damned if we do and damned if we don’t. We make rule changes and he agrees with them, he makes new rules and we agree to them, then he does whatever he wants. 

typical teen behaviour.... ya ya ya

I know... but there is a pattern to this behaviour. Sam gets tired and he forgets his meds. He forgets his meds and he cops an attitude. We remind him to take his meds we are treating him like a child. We remind him of the doctors suggestions and we are babying him. We DON’T remind him, we don’t care. We give him an iPod to use with alarms to remind him to take meds, exercise, do things for himself... he turns the volume off and uses it only to texts, email and do other things. He texts inappropriate things to people, he is up all hours of the night .... which comes back around to being tired, missing meds, getting grouchy and irritable -- this results in missed school and classes, falling behind and taking a full year to do courses that should only take 1/2 a yr. 

He claims he wants to go to ‘regular’ classes which would be fine, except he has dropped the ball on this, where he could have proven to the school and teachers that he was ready for full regular classes (by going to every class, working diligently, getting his work done and staying caught up) he chose to fight it and skip classes, not hand in work, take his time with assignments the school will mostly likely say no to his request -- as he has not proven that he is able to handle regular classes. 

Which will bring us back around to being treated like a child, missing classes, etc, etc, etc... tiredness, skipped meds, etc, etc ... which will inevitably bring us to another day (if we are lucky only one!) where he has had enough of it all (as his brain convinces him that we are all against him and trying to keep him here) and want to go. 

go anywhere

anywhere but here...

There is drama also with Josh and his gf... I cant even get into that...

I am so emotionally drained right now after this morning with kids then I get a phone call from someone in Dauphin where we thot we might be able to get some psychological and emotional help for Sam. We were told that Dauphin is not the place for us and I was given a few other numbers to try.  I am so tired of everyone passing us onto someone else. There MUST be somewhere for us to go with these issues! 


I am looking into a neuro feedback program for Sam-- but it is in Edmonton, it is costly and if he is not onboard... why bother!? To be honest I am scared to call in case I do and they say "there is nothing we can do for him here either". I am jsut trying to find somewhere for him to get help with his brain injury! Why is this so damn hard!? Good grief!  

How many phone calls do I have to make? How many people do I have to tell our story too and relive July 28, 2008 every damn time!? Then explain about Josh...and Isaac & Hannah!? I have to laugh when they say (cuz they all do) “and what about YOU Jodi!?” 

I want to say “WHAT about me!?” If I could get doctors to listen to me and get Sam some proper help maybe.... just MAYBE I COULD find time for me!

so not a good day today...

Upcoming week ....

Tomorrow Sam and I are heading into Winnipeg for a 5-7 day stay at the Health Science Centre ... or well Sam is staying there and I will be at the Ronald McDonald house down the street.

He is being admitted to the EEG Clinic for a 24hr surveillance of seizure activity. Since Sam has been on the Keppra (and the val proic acid too) he has been experiencing major mood swings, extreme fatigue, lack of appetite, temors and memory loss issues. These are all side effects of his meds but they could also be due to absent seizures.

Sam has been very hard to live with... his mood swings have been so severe that they are scary. He has had issues with his memory -- he will talk to someone in the morning and by the evening he will remember talking to the person but not the conversation. He is not eating much, if at all (I was told by a friend that Sam's friends will get after him at school that he has to eat). He is tiring more and more easily everyday. When he eats, writes or does anything his hands shake so badly that he can hardly do whatever task is at hand.

We aren't sure what to hope for an outcome... absent seizure activity or change in meds ... either are not exactly the most favoured results.

Something on a more positive note with Sam, he started back to school last Wednesday. He is still working with an IEP (taking Math and English) but he is also doing 2 hands on classes (Foods and Nutrition  and Chorale). He is taking these 2 courses more for social time with friends and easier credits for him to attain. If things change with his health it is not a big deal if he is missing the classes. We were all happy for him to go bak to school but we did have some brain issues to deal with too.

Since his memory is not too great it was going to be hard for him to stay focused and on top of his work. Also, until last week Sam was not admitting that he has a brain injury. So his brain kept telling him he was 'fine' and he was more than ready to go to school. HIs brain was telling him that his injury was all in our heads... It wasnt until he started working on his self therapy book and he had a major melt down with Dennis, that he was able to start seeing that he has an injury and he needs to start working on getting it to heal.  We have seen some great changes in Sam in just the first few chapters that he has worked on. So part of the reason I am going to WPg with him is to help him stay on track with his self therapy and school work.... the other reason is I am his mom and I know I would be of no use to anyone here at home when he is 3 hours away with no family or visitors -- I know, I know... I am the big baby here...

I will try to keep the blog updated on our stay while we are in...

Changing all the time...

I thot maybe it was time to talk about our new routine here... our new a the moment routine I guess you could call it -- since it could change again next week! And I am not kidding...

Sam is now on a new med regime:
7am ~ 250mg Valproic acid and 250mg Co-Levetiracetam (Keppra)
2pm ~250mg Valproic Acid
9pm ~ 750mg Valproic Acid and 250mg Keppra

With his meds this high it is really setting Sam on his ass. He is so tired that he now sleeps til 9am (or later if needed) and goes to school for 12.30 where he is in  a class where he works on Math and English until 3.30 when school is out. He has football practice on Tues and Wed, games on Fridays -- he is assisting the coaches where he can and on Thursdays he has cadets. If Sam has any troubles with sleep (or lack of it) he is to stay at home and rest. We are trying to make his school stuff as normal as possible but with his high meds, short term memory losses and TBI issues we are concentrating on 2 courses right now -- with the option to add more as he feels he can handle without adding stress into the equation.

On this coming Friday we are off to Wpg for the ESAM annual general meeting AND his keppra doses get doubled to 500mg twice a day then too, so we may have a new routine to follow after that. School schedule may change also... so we will see.

Sam was none to receptive to this new school schedule at first until we wrote out 3 scenarios for him to choose from. He then realized what we were trying to explain to him. Mostly that this is temporary(hopefully only until January) and for his best interest and health.  He is still pretty unhappy about it most days but he realizes (I hope) that there really is no other option. We choose this routine because it enables him to still spend lunch and breaks with friends at school, participate with his football team and cadets AND (mostly) reduces the stress that he feels with school -- that cause the seizures.

Now also add to that he has a full fiberglass cast on his foot -- the doctor thinks he may have fractured his ankle and hopes that this will help it to heal better or at the very least help the swelling to go down so they can get a better read on the xray...

This new routine also means more running to town for  Dennis and I.  Depending on our day and our schedules, one of us drives Sam the 30miles to school and then comes home. I also am running into town for football once a week, cadets (I use this time to visit with Daddy!),  and Friday football games. Hannah has joined gymnastics this year and since she has never asked to join anything really we felt it was not fair to say no to her.... so we are in town 2times every day ... 30 miles one way...

Some days I have done meals, laundry, housework, phone calls, writing, football stuff AND drove 120miles... whew... no wonder I am beat! I know this is just a season and it will all be over with before I know it. I am trying to see the best in each day -- such as Sam is now almost a month seizure free!!!!, Josh is starting to talk with us, Isaac will be 14 on Wed, Hannah is growing into a beautiful young lady....

sigh....

All because routines change...

ahhhhh.....**sigh**

Hear that!? yep... quiet, peace and quiet -- well almost. After almost 2 weeks of having kids at my side (sickness the week before March Break and then the actual March Break) my house is finally my own domain again!  Well, almost... Dennis is home and will be from now on. He has applied for a leave of absence at the CFIA (Canadian Food Inspection Agency) and will be working for my mom on the farm here (here being our house) on the cow calf operation. He doesn't officially start until after the 9th of April, but  he had some time off coming to him for work so he took it.  We will be spending time this week doing yard work, getting sheep ready for spring and hopefully a few finishing touches with the house renos.

Dennis being home now more will mean a new learning curve for us all again. He will be here in the morning with the kids as they get ready for school, he will be home (or at least near by) when they get home from school. He has already informed me that if it can be worked out he will drive the kids to the bus in the mornings for me(sigh... this is why I ♥ him!)  The kids are all fairly excited about this.

This also means that maybe my mornings with sam will not be as ARRRGGGGGGGGHHHHHH as there will be 2 of us to work with him! The last 2 weeks have been so draining for me. (when I think how tired both physically and emotionally for me I can't imagine how they are for Sam) He has been fairly sick with first the flu for 4.5 days and then it turned to a cold into his chest. So he was clingy, a bit whiney and just over all in a bit of a regressed state. Even tho we work hard to keep the kids in a routine over the holidays, it is still not our usual routine and it seems to stress him out after a few days. So I am very happy that today is back to school!!!!

This will be the first week for Sam to go ALL 5 days this week too. He will go Mon-Fri and then next week he will take the Wed. off in hopes of getting him back into full-time school. We are supposed to try it (crossing our fingers here) and if it is needed for a day off we will just take it-- but it will have to be a good reason to take a day before next Wed. Sam's inspiration for 5 day school week is football season. He has to be back to full-time before the spring league starts so he can play. (our rules not the school). He has been working out to work toward this and as soon as the weather co-operates he and Josh will be out running with Dennis in the mornings or after school to start training.

I have been busy trying to get the TBI conference 'out there' in the public but it seems that (I hate to say this) if it isn't cancer related people just aren't interested! No matter the information and statistics that you give people they just don't care. I had given my info for the conference to our local papers but neither of them have run the PSA's that I have seen!  I will be contacting them today to see what they are planning to do with them-- as there may be people wanting to REGISTER for this conference and need to know about it BEFORE it is over!  I am getting to a point where it feels like I need to be more aggressive about this, but I worry that if I get to 'forward' I will get emotional about it all and then look like an idiot as I try to advocate for something while crying my heart out...