Trial and Error – Day By Day – Gab Update

It’s been a month since my last Gabby Update so since we have experienced quite a few more changes I thought I’d take the time to share the latest.

After we left the hospital mid-January it was less than one week on the new medication dose before the negative side effects kicked in.  Unfortunately at that time we knew we had to make other changes.  The higher dose literally prevented Gabby from living a normal life without confusion and daily struggles.  After speaking with her Neurologist we decided to venture the route of a different medication.  The new medication is actually one she was on in the past prior to her Hemispherectomy and he informed us that sometimes the medication will work differently after the surgery.  We had hopes.

The new medication takes a full four weeks to reach the full dosage, with slightly increasing once a week.  We are almost complete with week three.  Tomorrow we will start the full dose of Tegretol and then completely stop the previous seizure medication, Zonegran.  At the end of next week we will be able to see the true affect of the new medication.  So far over the last three weeks I can say we have seen some great positive outcomes and unfortunately we have also seen a few negative ones.

Positive Outcomes:

• Increase in good behavior

• Much better mood and patience has increased

• Zero seizures

• Zero anger outburst

Negative Outcomes:

• Four bladder control accidents with three happening mid-day

• Since week three of Tegretol she has experienced confusion {we hope the confusion is from too much medication and will go away once we stop the Zonegran}

We continue to take it one day at a time…  After all it seems like a trial and error in life.

On a positive note… Gabby’s reading skills continue to sky rocket and I’m amazed at the books she is able to read.  She reads daily night time stories that normally a mother would read at bedtime.  Now if we can just get some math skills down and we continue to work on life skills every day.