How do they know?

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.

PlayingWithCaptainCalamari

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?

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9 Comments (+add yours?)

  1. Melissa
    Aug 13, 2014 @ 13:19:37

    I know some who was treated in a similar way the docs did not want to treat her baby’s pneumonia because the child only had a 2-4 year life expectancy ( chromosonal abnormality). She was told she should sign a DNR. She had to fight every step of the way, She asked the same question, “how do they know” this was 2 years ago. The baby is doing better than anyone could have expectedars ago

    Reply

  2. Madeleine Booth-Smits
    Aug 13, 2014 @ 13:21:27

    Listening to your story is breaking my heart. I’m so glad Vivian is doing all these amazing things. Are there any other doctors you can see? hope you get some help. My thoughts. love and prayers are with you all Mx

    Reply

  3. Rilla
    Aug 13, 2014 @ 13:21:32

    Fight fight fight for every bit of treatment for Vivian! Ask questions until they are weighed down with them. If they won’t treat her, find someone else! She is worth it, and she should be given every chance, and your Momma gut feeling is not wrong!

    The doctors said my cousin wouldn’t live past 5. Do anything.
    She’ll be 20 in December, she loves football, her vocabulary is way beyond what they imagined and her signing is better.
    Someone can help! I hope you’re able to get what she needs :)

    Reply

  4. Shawnna
    Aug 13, 2014 @ 13:46:48

    Speaking as the wife of an epileptic that has sustained neurological damage due to uncontrolled seizure activity and the mother of a child that was neurologicaly damaged due to microcephally…

    Insist that Vivian be seen by a neurologist and by a child development panel. The pediatricians aren’t going to be able to much more than simply treat the symptoms that she is currently presenting with… whereas a neurologist will treat her with an eye to the future, or, to preventing further damage.

    Can you simply make an appointment with a neurologist? Because that is who needs to oversee her treatment in this area and who the EEG would be most helpful to.

    Don’t forget that you have a right to insist that she get proper medical care. If they do that only because it will shut you up, then so be it

    Reply

  5. Jules
    Aug 13, 2014 @ 16:33:45

    You are her voice and her advocate. If you don’t feel comfortable with what is happening then don’t sit back. Ask for a second opinion, a referral, anything. I know you are fighting for her already and you are doing an amazing job.

    Reply

  6. Leah Hunter
    Aug 14, 2014 @ 12:23:30

    I agree with Jules comment totally. You and Ben have to be Vivian’s advocates and you are doing a great job. Yes, take someone else with you. Vivian will continue to amaze those docs! Love you 3

    Reply

  7. April
    Aug 15, 2014 @ 05:07:14

    Oh Gwen, I’m sorry Vivian isn’t getting the treatment she could be. Bringing someone along is a great idea. And unfortunately, sometimes you have to see a lot of docs before you find one who will work with you and give you answers.

    Reply

  8. Trackback: Staying hopeful | now & gwen

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