Saturday, February 5, 2011


I have always been a person who avoids taking medication if possible.  I will let a headache go for a couple of hours before I decide I really need to take Tylenol.  (I did, however, enjoy a few doses of Percocet after my c-section.  THAT was good stuff.)  I have had to get over this slight aversion to meds when it comes to Callie.  I don't even recall giving her a drop of Tylenol during her first five months.  Then suddenly I had to administer very serious drugs to her twice daily.  And I was told if those did not work, then there were others that could be considered, although the possible side effects could be even worse.  This was another hard part of the beginning of this journey.

Within hours of being diagnosed Callie was put on the steroid prednisolone.  She responded quickly to this treatment and the infantile spasms (IS) stopped within 3 days.  The hypsarrhythmia also cleared from her EEG within one week.  This was amazing news... we were told not many children respond this well and this quickly to treatment.  This also meant she could avoid taking ACTH which we would have had to administer daily by injection and supposedly would have cost around $70K(!).  One week after starting treatment she was also put on Topamax, an antiepilepsy drug.  Both drugs can be tough for infants.  We were told the steroid would probably cause an increase in appetite and the Topamax would cause a decrease in appetite.  Both drugs commonly cause irritability.  I was worried about losing my happy, mellow baby.  It turned out we were lucky again and she did not get irritable, but she was extremely hungry and wanted to nurse around the clock.  She gained two pounds that month!  Eight weeks later she was weaned from the prednisolone and everything was going great.  I was feeling much better about our new reality and we had adjusted and were moving on.

Then things fell apart again exactly one month after her last dose of steroids... The IS returned.  She started experiencing the same type of episodes and they would last between 5 and 10 minutes.  My heart sank each time I saw her seize.  I felt devastated all over again.  These episodes went on for most of a month while her neurologist kept increasing her Topamax to see if we could get them under control.  She had been on 1.5mls twice per day and was gradually increased up to 7mls twice per day.  In hindsight, I wonder if her sudden weight gain in June and July made the original small dose of Topamax ineffective, but I guess we will never know.  One day I was reading online about others' experiences with IS and I kept reading how important it is to be aggressive with seizure control.  I knew this, but reading it again that day lit a fire and I picked up the phone to call our neurologist.  It turned out that he was out of the office, so I was put in contact with his backup, Dr. Pearl.  I explained the situation and assertively told him I felt like we had waited long enough for the Topamax to work... we needed to be more aggressive to get these spells to stop.  I was surprised at how well he listened, and then he responded and said absolutely.  Based on how well she responded to the prednisolone last time, he wanted her to be put back on it immediately, as in right then.  As I hung up the phone I felt a mix of feelings -- relief to be doing something, shook up because it suddenly seemed so urgent, and upset we did not take this step a week or two earlier.  Regardless, I still had some of the medication left from June and rushed to give it to her again right away that afternoon.  After that first dose she never seized again!!  It worked immediately.  PTL!

In the weeks that followed she was weaned from the steroid differently to prolong the effects.  Her doses were stretched out for 13 weeks.  She last took the medication right before Thanksgiving.  Around that time I spoke to Dr. Pearl and asked him for a med plan if the seizures returned again.  In the previous months we had taken Callie to two other doctors for other opinions.  Both chose vigabatrin as their drug of choice for her.  When I first learned about it, I was completely turned off when I found out it was only recently approved in the US and there is a risk of permanent vision loss!!  How scary.  When we went to see the second doctor who also recommended it, he took the time to explain why he felt it was a good fit for Callie.  He explained it has been very effective in controlling IS and he would only want her to stay on it for a short period of time.  During that time she would have regular eye exams to monitor her eye health (in addition to having a baseline eye exam and OCT study before even beginning the drug).  Also, he explained the vision loss is *peripheral* vision loss (not complete) and it is most likely in children with Aicardi syndrome, which Callie does not have.  He went on to restate the importance of controlling IS and said it would be much more damaging for Callie to have IS than a remote chance of peripheral vision loss.  IS are devastating to a child's development.  He strongly felt it was worth the risk for her and I left the appointment feeling convinced.  Back to Dr. Pearl... He said he was on board for trying vigabatrin next, but felt we should keep her on Topamax until it failed (not proactively switch).  I was okay with this and felt satisfied having a plan.  Two weeks later we took Callie to see a recommended ophthalmologist to have her baseline eye exam completed in preparation for the switch if needed.  We decided to hold off on the OCT study since it involved anesthesia and a half of day in the hospital.  I do not want to put Callie through that unless it is absolutely necessary.

I am happy to report Callie has now been off the steroids for just over two months now and remains seizure free!  The Topamax seems to be working for now. Each night I say a prayer of thanks for another good day.  I do not know how long this will last, but we are hoping for the best.

In addition to these drugs, Callie takes Zantac for reflux and sometimes Miralax for constipation.  I am now used to giving her multiple medications each day.  This is just what we need to do for our baby girl.  I try to keep everything in perspective and know it could be so much worse.  



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