Documenting a Med Change...

So, about 5 weeks ago we started to wean Faith off her usual epilepsy medication.  Phenobarbital is what she had been prescribed at just over a year, to control her seizures.  It worked wonderfully, we have been so fortunate to not have had to deal with huge seizures, or on a frequent basis.  She has gone months between them, most of the time, and they have continued to remain smaller, focal seizures. 

What a blessing this medication has been to us!!  The medical community is phenomenal in the strides they make to help people live as good as they can. 

Phenobarbital has side effects.  If you recall from previous posts, when making the decision to medicate or not, we had a hard time.  Which poison were we going to try...more regular seizure activity or potential side effects.  Both could end up putting us in very difficult situations.

Because phenobarbital is a barbiturate, it depresses brain function, reduces the breathing and heart rate, and decreases blood pressure and body temperature. As a result, the most common side effect of phenobarbital is sleepiness or fatigue. Patients should be cautioned about driving, operating machinery, or any other dangerous activity until they see how they react to this medication.

Other side effects include:

depression  - not 100% sure, but Faith would regularly regress into her own world...

hyperactivity (in children)

impaired attention (in children and adults)

dizziness

memory problems

decreased sexual interest (libido)

impotence

slurred speech  -delays in speech
nausea
anemia
folate deficiency
rash
fever
low calcium levels, bone loss  - Found at Epilepsy.com

So, in the first paragraph...it depresses brain function.  Faith is still just growing, her brain is still developing... and we had to decide whether we wanted to have her brain affected by the seizures, or basically "freeze" her brain so she doesn't have seizures.  How does one comfortably make that decision???

Of the side effects listed above she exhibited the ones that I highlighted for sure.  There are other side effects listed that relate to children and describe Faith to a tee!!

Some studies have found greater problems with behavior and thinking in children taking phenobarbital than in children taking other seizure medicines. Some studies have found that phenobarbital worsens pre-existing hyperactivity and aggressive tendencies. Many physicians believe that phenobarbital sedates children, with a greater effect at higher doses. A number of studies have not found any sedation, however, perhaps because some children become extra alert and their scores cancel out those of sedated children. Nevertheless, the problems with phenobarbital should not be overestimated. - Found on the same page as above quote

So, we jumped into this med change with hesitancy...it is hard to decide that we want to change a med that is controlling the seizures because of the "potential" side effects.  But, we did it.

We put her onto Trileptal, which is a fairly new medication, within the last 15 years.  I did a lot of research on it and it seemed to be the one that I would be most comfortable with.

Some side effects of Trileptal that have been reported include:
dizziness
headache
tiredness
drowsiness
double vision
stomach upset
loss of coordination  - Found on Epilepsy.com

That is it.  That is the list...potentially after long term use it may affect her sodium levels, making them too low...but that is when you just eat a high sodium diet.

How could we say no to trying out this new medication?  We couldn't...so, as I said, we jumped in. 

We are on week 5 now.  We are on the week that I thought would definitely be the worst.  And I hope that I am not jinxing myself here, but Faith has had only 1 very small seizure, 2 weeks ago.  It was short and not a big deal at all. 

Are we seeing any differences at all?  OH MY GOODNESS!!! YES!!!

Faith has not been doing very good with her speech.  She is quite delayed in speech and we have been working on it.  Tonight (Faith just had tubes put BACK into her ears today) she carried on an entire conversation about her day today.  She had appropriate responses.  She said yes and actually meant yes.  When asked how many popsicles she had she said 2 and that is correct!!  She said that she went home with daddy...She actually carried on a conversation.  This has not happened before.

The other night we were at a friends place and Faith was playing with their movies.  She brought a few over to us and said "movies"...she has never said that word before!! 

It is like her brain has thawed out and is no longer in a frozen state.  She is able to think for herself and respond. 

When the nurse wanted Faith to hold his hand today, to walk to the room for her surgery, Faith said very loudly "NO" and ran to hide behind my leg...this is unheard of in her life.  She is the first one to go and climb on any strangers lap...and she said "no"...I was so pleased and excited that I saw that.

I asked her tonight to bring me her backpack.  She walked over to it, without me pointing, and picked it up and brought it back to me.  Usually she would stand in the one spot and look all around for whatever the item was.  She would never actually make it to the point of bringing it back!!  She followed a direction and saw it through to the end:-)

If you can't tell...I am ECSTATIC!!  I am THRILLED!!  I have never felt better about such a hard decision.  I love the fact that she is finally making progress.  I love that she can go to preschool and I am not hearing stories of her beating other kids up.  I am THRILLED!! 

Really, I am so glad that we had the peace to go through with this and pleased that we have followed through. 

Anyhow, I am gonna run...