Infantile Spasms

I haven’t even had a chance to write about how Vivian made her debut; it was a very bumpy ride into this world for her, and a very traumatic experience for all three of us. After an emergency c-section, we spent the first month of her life in hospital in NICU with her. What is happening now relates to what happened then- long story short, Vivian suffered perinatal asphyxia at birth from severe meconium aspiration. She was placed on a cooling system for the first three days of her life to protect her brain, intubated, and hooked up to BRAINZ monitors.

We didn’t get to hold her for days. We had our first skin to skin on day 7. First breastfeeding at day 9. Not your average birth experience by any means. It’s been a very hard road since then with her, as she is a very irritable baby and the normal things that usually soothe babies do not always work for her. Skin to skin infuriates her most of the time. Baths could go either way. Showers are great, but once you take her out, it’s like you never calmed her down in the first place.

Ben and I are having an especially rough week after having to take her in to the hospital.

Vivian started having some seizures the week before last, just a few, and we didn’t know that’s what they were at the time. We put it down to stomach pain from one of her 6-week vaccinations. Unfortunately, this is not her first time having seizures, as she had some during her first week of life when she was in NICU. We had never seen them and had only read about what they looked like in her notes – lip smacking and eye flicking – this is not what we were seeing.

She had some more on Wednesday evening this week, and then again on Thursday morning. We were quick enough to catch some on video and took her in to the hospital to be seen in the Children’s Acute Assessment Unit, but of course we forgot our camera.

When we described the seizures to the doctor, she put it down to reflux, and when my reaction wasn’t really overjoyed at her wait and see approach, she told us to email her the video when we got home. She called us to confirm that it looked like Vivian was having infantile spasms, a pretty rare form of epilepsy that presents in infants. This is what I was very afraid of. Unfortunately it can be easily missed and we are lucky that we videoed what we were seeing.

They have advised us to up her anti-seizure medication, levetiracetam, on advice from the pediatric neurologist at the hospital and in conjunction with her neonatal doctor that we are seeing again the week after next. They didn’t even want to do an EEG, which is normally done if an infant presents with them, and this concerns me a great deal.

From what I have read, infantile spasms should be treated very aggressively as soon as they are picked up because they can lead to developmental regression if seizures are not controlled and EEG activity is not normalized. I’ve also read that levetiracetam is not a front-line medication for treatment of infantile spasms. The doctor tried to tell me it was, but I’ve joined the only two communities for parents of children with IS, and the parents there have overwhelmingly said I should seek a second opinion, as this is not the drug that should be used as the first line of action for these seizures.

The two main drugs used to treat IS both have chances of some side effects, but I think the risk of those happening may outweigh the risk of her developing even further brain damage and developmental regression if we don’t get the IS under control.

Really struggling with what to do here. I’ve emailed the doctor as I don’t have her number and I’m waiting to hear back as to why they are happy to make us wait to do an EEG (or not do one at all right now), and why they feel levetiracetam is the better option when the other two drugs are shown to be far more successful at treating IS. Two parents in NZ told me to take her to Starship hospital, but obviously that’s in Auckland and we’re in Christchurch, and we are so broke right now. So very broke.

Really hoping for a miracle that this can be treated successfully in Vivian. So many stories I’ve read have had unsuccessful outcomes if the child’s case is symptomatic, like Vivian’s, where the doctors know why they are happening (her brain injury at birth). The odds would be so much better for her if they had no idea why they were happening. The longer the child has seizures, the worse their developmental regression is. If you can quickly and successfully get them under control, kids have amazing outcomes.

I feel so helpless. I want to make this all better for her, and I can’t.



3 Comments (+add yours?)

  1. Rebecca
    Aug 10, 2014 @ 05:05:15

    hey, don’t know if you remember me – was morningangel on neopets. Anyway.

    1 – congrats on the your new addition! she is seriously the sweetest little thing i’ve ever seen

    2 – I am so very sorry you and Vivian are having to go through this!! I definitely would agree that a second opinion is in order but I understand the barriers! is there family around to help? If you could find a way to get to the states, you can stay with me and get her seen at the children’s hospital here! it’s the best (in the states, anyway)

    3 – will say prayers for you and Vivian to get well!


  2. Rilla
    Aug 10, 2014 @ 09:42:08

    She has such a beautiful smile, Gwennie!
    I’m so sorry to read about all this, I can’t even imagine how hard this must be.
    I don’t know where Auckland is or how much the trip would take, but if you let me know what you might need I can PayPal you some funds to get her to where she can get some help. It might not be everything you need but I’d be happy to help get you guys started if I can do anything.
    Love you you all!


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