I talked to Vivian’s pediatrician on Monday, twice. Both times via phone. Both times were incredibly awkward.
The first time in the morning in front of our Neonatal Outreach nurse and Ben, as it was the nurse’s mobile phone we were talking on.
I asked the doctor why we were not getting an EEG done for Vivian, why were the doctors just happy to up her current medication without doing an EEG as well? Her reply was that they were 100% happy to say that Vivian was presenting with infantile spasms and that because of Vivian’s brain injury, she will already have an abnormal EEG. That they did not want to ‘chop and change’ her medication right now, although we may end up having to do that further down the line if this medicine doesn’t work. She told me that the cases I’ve read will not apply to Vivian, because she is a symptomatic case of IS, and they already know that this is stemming from her brain injury. That we need to put her into a different category.
I was just shocked by this. She said she would call me back in the afternoon to discuss upping Vivian’s current medicine to the maximum dose.
I got off the phone, not knowing what to say or what to ask. It only created more questions for me. I went to the Infantile Spasms community and asked if there were other cases of symptomatic IS that have been treated in this manner parents replied that their doctors had done numerous EEGs on their children, even though they knew what was causing the IS, because to treat IS you have to treat the seizures and the EEG activity.
Another parent pointed out that many doctors will treat the child and not the EEG- only treating for clinical seizures.
The doctor called back, and I asked again, why are we not doing an EEG? She said because it will not change Vivian’s outcome. I asked, could we be missing seizures that would be seen on an EEG though? She said yes, we could be, but that they were only treating the clinical seizures because they were making Vivian uncomfortable. Not because they would change Vivian’s outcome.
So, in other words, because my child already has brain damage, the doctors seem are unwilling to go the full mile to treat the IS fully, because they do not believe it will help her development or brain activity. The doctor said she was sorry that I had to come to terms with this. That the neurologist would “try” to be there for our appointment on 19 August.
How do they know what Vivian might be capable of? Nobody thought she would even be able to breastfeed, and she did that. They thought she wouldn’t make eye contact, and she does that. She smiles, she bats at her toys like any other baby her age would. Her head and neck control have always been very strong, and she can push up on her arms while on her tummy, just like any other baby can right now. If you talk to her she will coo at you quite happily while looking at you in the eye. I know some babies with IS cannot do any of these things. I am afraid of losing these milestones.
How do they know that treating her more aggressively would not be worth it? How do they know that we are not risking regression of her development by not treating it fully? Again, how do they know what Vivian could actually do if she was given the chance to live fully seizure free?
I believe Ben and I will be asking someone to accompany us to the appointment, to make sure we get all the questions asked and answered, because I can’t seem to get my words out correctly when talking to the doctors about this.
I am praying that the current medications are enough to treat her seizures but how will we know without having all of the information? How do they know?