Next Steps

Vivian’s doctor appointment on Tuesday went better than we expected.

She has had no further seizures since Monday afternoon; the neurologist wanted us to get more of her seizures on camera and of course as soon as he said that they (thankfully) stopped.

After asking tons more questions about Vivian’s spasms, the neurologist suggested we stick with Vivian’s current medication for a bit longer, because she isn’t having daily seizures like some babies with infantile spasms do. He said there is a small chance they could go away while on the current medication, so we are keeping our fingers crossed that it happens.

He also confirmed that Vivian will be having an EEG done this Tuesday, to find out what we can see. I am very happy that they are finally moving in the right direction on getting all the information we can about what’s going on with Vivian’s brain.

We also talked about next steps if Vivian continued to have more spasms; the doctors gave us a prescription for prednisone to get filled immediately if she does have more, so we don’t have to wait around for someone from the hospital to get one for us. The recommended dose is enough for an adult with acute arthritis…a lot for a little baby. The side effects are daunting – irritability, rapid weight gain, facial swelling, high blood pressure, immunosuppression. The list goes on.  I really hope we don’t have to get that prescription filled.

If we have to use it, she will most likely be on the steroids for 6 weeks. If they don’t work, we move on to the vigabatrin. It looks like we will not have to look elsewhere to get the treatment we need for her now that we’ve put a plan in place with her doctors on what happens next and we’re getting her EEG done, which is a huge relief!

The rest of the appointment went fairly well; Vivian’s pediatrician was impressed with the video clip I included in the last post. I don’t think she expected Vivian to be so active and happy. Vivian was actually very settled during the appointment. So much so that when the neurologist tried to get her to fuss at him, she wouldn’t. She just cooed at him instead. He had a super calming effect on her- we told him we needed to have his number so he could come soothe her when she was inconsolable for us.

We also discussed her treatment for reflux and are sticking with the current medications at the moment (gaviscon, prilosec) and assessing again in two weeks, with the speech and language therapist.

Vivian even managed to gain weight between Friday and Tuesday, when we were so sure she would have lost weight from having the rough weekend due to having seizures and low feeding volumes. Some days she has excellent feeds and others she doesn’t. There is no rhyme or reason that we can discern, and when we don’t know why she is having a crap day of feeding it really takes its toll on Ben and me, especially because of the weekly weigh-ins by the Neonatal Outreach nurse. We have spent so much time stressing about how much she is eating and feeling  pressured to get as much milk into her as we can. It’s enough to make you cry on the bad days when she’s screaming and won’t eat and we can’t figure out why.

The only bad thing that came out of the appointment is the discovery that Vivian’s head circumference hasn’t grown at all since she was born. The pediatrician said we would need to keep an eye on it. Of course Googling this led to me reading up on microcephaly, which can lead to even more developmental delays and can also cause seizures. Add that to the list of secondary diagnoses stemming from Vivian’s rough start. Trying not to worry about that too, now. Failing! I guess that’s part of parenthood?

Bonus: Vivian didn’t really cry on the trip to and from the appointment. Definitely a first! Here she is in her car seat, watching the world go by:

Watching it all go by

 

I think her eyes are turning brown. I told her to stop that. They are meant to stay blue, damn it.

Hope your weeks are going well. Leave us a comment and tell us what’s going on in your world.

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9 Comments (+add yours?)

  1. Rebecca
    Aug 22, 2014 @ 11:28:39

    don’t google things. you’ll drive yourself nuts :P

    Reply

  2. mrsstaceydodd
    Aug 24, 2014 @ 11:24:40

    Hi Gwen, great news to hear the seizures have eased although I’m sure you’re like me and worry non stop about them reoccurring!
    Yes, googling can lead to lots of hours and more worries however from my experience it has led to two correct self diagnoses for my boy. The thing is, if you’re not going to research things, then who is? The doctors are often too busy or do not know your child as well as you do. And even if you’re wrong, at least you’re better informed about the possibilities. I knew lots about infantile spasms before we got our official diagnosis which made digesting all the information and the process just that little bit easier (although not really easy obviously!) All the best for the EEG. Take care for now :-)

    Reply

    • Gwen
      Aug 24, 2014 @ 23:03:45

      We’ve had more seizures tonight, so looks like we’ll be starting steroids tomorrow.

      I’m a big fan of Googling in moderation- finding well researched and credible sources.

      Reply

      • mrsstaceydodd
        Aug 24, 2014 @ 23:12:32

        Oh Gwen I’m sorry to read this. What dose has been prescribed? We started on a lower dose then increased it a couple days later as the episodes were lasting for awhile and were reoccurring post sedation. Side effects kicked in after a week. Hang in there.

      • Gwen
        Aug 24, 2014 @ 23:19:53

        The neurologist prescribed 2ml four times a day to start. I don’t know if that’s a big or small dose for babies, to be honest. I’m guessing it’s small because he said if it doesn’t work we’d try increasing it.

      • mrsstaceydodd
        Aug 24, 2014 @ 23:32:33

        Yeah that’s the smaller dose. Thomas was on 4ml 3 x day. A hefty dose but he was weaned off that after a wk and then it gradually decreased in amts over a period of 15 days. Every 5 days, it decreased.

      • Gwen
        Aug 25, 2014 @ 00:08:51

        He might have weighed more than Viv does when he started on it, perhaps? She’s just hit 5.35kg at last weigh in.

      • mrsstaceydodd
        Aug 25, 2014 @ 00:24:10

        He was 6.2kg when he started the treatment. He’s 6.5 kg now. Bit of a small lad for 8 months although was 6 wks early. :-)

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