Wednesday, April 25, 2012

this is not that post...

this is my motto these days...
Soon I am hoping to write a post that is more cheery and upbeat and filled with rainbows and unicorns... but this is not that post.

One day I will write a post that says someone is actually listening to me and believes what not only myself but the rest of the family  and his teachers at school sees...
but this is not that post.

There will come a day where I can say that I fully trust and have faith in our doctors...
but this is not that post.

Ever since Sam has been diagnosed with seizures we have dealt with so much that we are exhausted. Looking back over my posts from last summer/fall and reading how once Sam was on these lovely seizure medications how he has slipped further and further from us. His moods are severe and extreme, his tiredness is NOT typical teen behaviour, he doesn't eat yet is gaining weight, he doesnt exercise as he has no energy most days to get up the stairs to go to bed!

There have been days of violence towards siblings, verbal abuse towards siblings and Dennis and I, running away episodes, depressed days where we were scared to leave him alone... not pretty days to say the least. This last week has been one of those kind of weeks...
Monday he left school in fine moods, nothing happened on the bus (so we are told), the kids all came home, had a quick talk with me about what needs to be done for chores in the barn, and away they went ...
10 minutes later I recieved a text from Josh that Sam and Isaac were fighting and I was needed. Out I went to help. They were not fighting anymore and when I asked what was going on, Sam  proceeded to punch Ike in the chest and then the two of them counldnt really say what started it all. Then Sam suddenly walked away to the house where he packed a bag and was leaving.

No one understands him, we dont 'get' anything and he was outta here. We tried reasoning with him, telling him that if he was determined to leave he needed to call CFS and let them know he wants out. He yelled about it all and left ...
again
no meds, no wallet with ID, no medic alert bracelet (his broke last week and we are waiting for a new one), he doesnt have a cell phone, no money, no clothes.... nothing
so off he went and since we didnt know what to do anymore we called CFS and they directed us to call the RCMP. They said they could do nothing for us unless we want to report he was a danger to himself "so just follow him and keep him safe"
... so that is what we did. We were able to get him to talk to us for a few minutes in the van to learn
 his plan was to walk to Alberta to see a girl he met 2-3 years ago at cadet camp that he has been talking with on the phone for the last few months.  Then he got verbally abusive to me again and I told him to leave the van and we would continue to follow him.
 He got out and turned for home.

I am sorry but if this is typical teen behaviour then every other teen I have worked with are not 'normal'.
I did more research about the med Keppra he is on and this is what I found: (what Sam experiences are all in bold red)

KEPPRA

Common Side Effects

  • sleepiness
  • loss of strength and energy
  • dizziness
  • anxiety
  • nervousness
  • irritability
  • other mood changes



  • decreased ability to cope with daily life events
  • depression
  • thoughts of suicide
  • severe anxiety, agitation, or confused thought

VAL PROIC ACID


  • tiredness (sometimes with slower thinking)
  • dizziness
  • upset stomach
  • vomiting
  • tremor (shaking of the hands or other parts of the body
  • hair loss
  • weight gain
  • changes in behavior (depression in adults, irritability in children)
  • weakness, sluggishness, swelling of the face, loss of appetite, vomiting, or yellowish eyes or skin, especially in a child under 2 years of age (possible liver failure)
  • pain in the abdomen, upset stomach, vomiting, or loss of appetite (possible disease of the pancreas)
  • easy bruising, nosebleed, or other abnormal bleeding (problems with clotting)

I just wonder how many side effects does a person have to exhibit before they will look seriously at possibly changing the meds?! Sam has experienced all of this since the beginning of the seizure meds and now it is becoming increasingly worse.

Dennis apoke with Dr. A (neuro)  yesterday and explained everything to him and next week Sam will be starting to be removed from Keppra and on to CLOBAZAM for 6 months and then they will put him on Mylosine after that. So we can expect seizures and Sam is not to go for his learners permit (not a major thing right now) so we will see how that goes.
I also spoke with our family doc yesterday (Dr.T) and he says it is a combo of 4 things: teen years, meds, head injury and me...
yes me... I am caring too much and I need him to be a kid... no kidding!? really!? I am to let him go out and be a teen!? who knew!?  Sam has a busy social life! He is busy with cadets and does things with friends, visits with family (cousins and grandparents etc). He doesnt go out and party or even go to the movies too often but that is because it is a $$ issue and a distance thing! We have 4 kids to support and run after, sometimes there is no money to hand out so they can have everything they want. We encourage all our kids to get out and go hang with friends, but they choose not too some days so do we force them?!
I am so tired of people and doctors telling me that I need let him be a teen -- WTF do they think we are doing!? It is hard to get him to go to a friends house if they dont invite him or they dont except invites to our house. how do others know what happens in our house? do others know that we try to get the boys to go out but they choose not too.
It is one of those damned if I do and damned if I dont things again. The doctors (and other helpful people) tell us to do things, so we do it, then we are wrong or they ignore what we say is happening. Or if we let Sam be a teen and something happens it is "why did you not do this" (because you told us not too) or "why did you do this" (because you told us too) or if we GASP try to do it another (aka- think for ourselves) we get "what!?" 
I agree with my friend Marianne who says that the doctors are just 'practicing" medicine... but i beleive they need to 'practice' listening to the patient and caregivers just as much (and as fast) as they are ready to prescribe drugs....

1 comment:

Caregiver said...

I have to say amen. This exhausted me just to read it. Living with brain injury, especially in a growing teen is a serious challenge. His brain is still developing.

Write this out anytime. Maybe something may well occur to you that will help. I hate what they to us, but I think it somewhat true, that each case is individual, and only you know Sam and what he was like before the brain injury and the meds. Keep seeking other medical professionals if you need to. hang in Jodi.

I hurt for you all. Love gin