Staying hopeful

Vivian started having more seizures last night, so the doctors finally scheduled an EEG for her – possibly within a week or so – and it looks like we will be changing Vivian’s medication after our doctor’s appointment tomorrow. The increased dose of her current medication is obviously not working :( As unhappy and terrified I am at her having more seizures, I’m glad our doctors are finally on board.

The seizures only happen when she is on her back, which is very strange. This led to a very exhausted family last night after 5 hours of nonstop crying due to seizures every time we would get Vivian settled. Ben and I were just beside ourselves as it looks like she is just so afraid during them and then afterwards is so inconsolable. She ended up so exhausted that she passed out on my chest (very rare) last night and today we finally figured out that if we prop her on her side they don’t seem to happen, so for now this is our solution:

Side sleeping

We were going to take her into the hospital again, but the registrar called and said there really was no point, as there is nothing they can do for her in the short-term. This was very discouraging and frustrating to hear, but later on we actually spoke to the neurologist via phone and got a lot more solid information from him about where to go from here, including a more thorough explanation of why an urgent EEG isn’t going to change our options at this point now that the Keppra (levetiraceatam) isn’t working.

The neurologist clarified what the pediatrician was trying to say on Monday: because they are sure these are infantile spasms, the main thing to do right away is to treat the seizures, not what we would see on an EEG. If they weren’t positive these were infantile spasms, they would be getting an urgent EEG done. Because any of the new medications we could try will take at least 10 days to work, the EEG we (now) have scheduled will still show the abnormal patterns of the infantile spasms and the abnormal patterns caused by Vivian’s brain injury.

So, the follow-up appointment tomorrow is still when we will figure out what the next steps will be.

I still don’t think they are giving Vivian much credit in the developmental milestone department, but at least he didn’t say they aren’t expecting much because she already has brain damage. Still not a perfect run through what I would have liked initially (I would have liked her to have already had an EEG done, or for them to have already scheduled one when we first saw these seizures), and definitely not the same thing as “we’re only treating these seizures because they are making her uncomfortable, not because they will affect her outcome.”

The neurologist also said we’ve caught them very early, and that he wouldn’t worry overly much about them causing much developmental regression now. He said if the seizures were left untreated for 3-6 months he would worry more about developmental regression, because they have a cumulative effect.

The two main treatment options we have to consider now are either steroids (prednisone) or a drug called Sabril (generic name vigabatrin). Each of them have some pretty hefty side effects, but due to Vivian already having possible renal impairment and possible vision problems, I think the doctors will suggest we try the steroids first. Still pretty afraid at this point, but a bit more hopeful that our doctors will actually be working cooperatively with us to try to get these seizures gone. I am hopeful that we will not need to change hospitals or look at going to Starship in Auckland.

I know that infants with symptomatic cases like Vivian have a harder time achieving seizure free status, but I will continue to have hope that Vivian is one of the success stories so she can have many more happy, seizure free days.

 

I recorded this yesterday before she started having more seizures. She is 10 weeks old today. Time has gone so fast. Tonight the seizures have stopped, and she’s been able to be settled to sleep pretty easily. Keep your fingers and toes crossed for us, please!

Also, a huge, gigantic thank you to everyone who has been praying for us, and to everyone who has contributed to Vivian’s Givealittle fund. The generosity we’ve been shown is so amazing. It’s good to know we will have some funds available to go to Auckland if we need to, and if we don’t, for whatever Vivian may need to help along her journey. Ben and I can’t thank you enough.

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5 Comments (+add yours?)

  1. Leah Hunter
    Aug 19, 2014 @ 16:50:10

    We loved watching Vivian laugh and Dance. Thank you Gwen. Love you

    Reply

  2. Madeleine Booth-Smits
    Aug 19, 2014 @ 21:36:34

    Thank you for the update. So glad that you’re getting extra help. That video is lovely. She is such a beeuaitful smiley girl x

    Reply

  3. mrsstaceydodd
    Aug 19, 2014 @ 23:07:14

    Lovely blog Gwen :-)
    So sorry to read that you have not had a straight forward process with the doctors during this very stressful time. I hope you get an EEG done soon. Has Vivian had one before? Our Thomas has had 3 and awaiting a 4th to completely rule out the infantile spasms which at times can be present without any noticeable physical spasms. Take care *hugs*

    Reply

    • Gwen
      Aug 19, 2014 @ 23:47:47

      We now have an EEG scheduled for this coming Tuesday; Vivian has not had one before. One of the main reasons we’re getting this one is that we pushed for it. The doctors are very consistently pointing out that Vivian will have an abnormal EEG anyway because of the brain injury she sustained at birth, but we would like to be able to rule out the silent spasms as well as the clinical ones that can be seen.

      Just getting through the rest of your blog this evening. I hope you all are having a good week up there. <3

      Reply

      • mrsstaceydodd
        Aug 19, 2014 @ 23:59:20

        Hey Gwen! Yeah, not too bad thanks. We have decided to go ahead with Conductive Education to help Thomas with his motor skills. Good on you for pushing for the EEG. I totally agree with your reasoning and it’s all about understanding what’s going on with Vivian. Also, make sure you get a copy of the report either from the Pediatrician or Neuro Pediatrician. I have had to ask every time as they never get sent out but they were happy to give copies. All the best for Tuesday. Will be thinking of you.xo

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