Weight Woes & Ear Checks

It’s been a month since I last posted updates – oops!

Good news first: Vivian is still seizure free and we are a month into weaning Vivian off of her anticonvulsant medication (a quiet woo hoo!).

Bad news: It’s been this long between posts because we had a setback with Vivian’s weight and it has been hard for me to come to grips with it, and because Vivian’s birthday kept us really busy (will update about that soon, I promise).

The day after my last post, we had Vivian’s next pediatrician appointment at the hospital, where she was weighed for the first time in three months.

We were pretty shocked when the scales read 7.65kg, meaning Vivian had only gained about 320g in three months. It was super disheartening when the pediatrician pointed out that this put her at the first percentile on the hospital growth chart (based on forumla-fed infants). She did grow 8cm over those three months, though, so her growth hasn’t been stunted at all.

Ben and I left that appointment full of gusto about getting Vivian onto three meals of solids a day, and me vowing to research everything I could about getting more calories into these limited (smoothest of smooth) solids.

The pediatrician also put in a referral to get a dietitian working with us. I will admit that it was really hard going home and realizing that yet another thing with Vivian is not going to be easy. Really hard. But she’s still smiling, and laughing, and being as active as ever, so she’s definitely not failing to thrive. On the bad days, she makes us really work for those smiles and laughs, but it’s still worth it.

I was also pretty confused because the New Zealand Well Child books use a different growth chart than New Zealand hospitals use. The well child chart is based on breast-fed infants and is the one used by the World Health Organization. On that chart, Vivian’s weight put her at the tenth percentile, not the first.

Vivian was weighed again last Monday and now weighs 8kg (I think this puts her at the 25th percentile on the WHO chart) after a lot of hard work by Ben and Vivian. Ben has been working on upping the volume of solids at every meal, along with adding things like cream and butter to Vivian’s solids, which she doesn’t seem to mind. We’ve also discovered Vivian takes after me and shares my love of peanut butter. Her only accepted savory flavor to date. We’ve got a long road a head of us on food! Hopefully we will get there one day.

The dietitian finally made contact and saw us last week and didn’t really tell us anything we hadn’t read already while researching a higher calorie diet for Vivian. She did, however, point out that breast milk wasn’t providing Vivian with an adequate amount of iron past the first 6 months. When I mentioned that this information was somewhat outdated, and that the iron in breast milk is more readily absorbed than iron found in other foods, she didn’t look particularly pleased with me and so I spent the rest of the meeting on edge, and was pretty disappointed with the information she provided.

At the moment we are still continuing with donor milk, as we haven’t run out yet. She did mention a supplement we could add to Vivian’s breast milk that will boost the fat and calorie content and dropped off a sample for us, which is a good avenue to look at, but a large amount of powder will need to be added to the bottles and we’re not sure Vivian would readily accept the flavor. Something for us to trial, I guess.

Slight rant: Today we were back at the hospital for an ENT appointment that was completely superfluous and a waste of time. We were there for all of 90 seconds once we were called back from the waiting room. They only wanted to check Vivian’s ears to make sure there was no fluid build up or sign of infection, even though we already see the hearing specialists at least once a month (usually twice a month)!

While I do appreciate that they have Vivian’s best interests at heart and that they’re being vigilant with her hearing health, we could have told them her ears are clear because they were just looked at 10 days ago.

I leave you with what Vivian thought of the waiting room:

What Vivian thinks of having to wait for her appointment #hopeforvivian

A post shared by Gwen (@gwenami) on

And will try to update with how Vivian is getting on in physiotherapy and her birthday soon!

100 Days

Today marks 100 days since Vivian last had a cluster of spasms. This is pretty awesome, and we’re quietly happy that she’s not having those types of seizures any more.

We have come so very far in all sorts of ways. She was 7 months old yesterday as well. 7 months of the crazy roller coaster called life for our little Vivian.

I am wary of saying that she’s now 100 days seizure free, because some mornings she will still have a few suspicious movements while she is lying on her back on the changing table.

I’ve mentioned them a couple of times; they look like very strong startles, where her arms snap back on her changing mat and her feed slam down, sometimes hard enough to make a noise. Her head turns to the side and her eyes go up in her head. It doesn’t last longer than a second, so if you blink or if you’re away getting her next outfit, you’ll miss it. But if you watch long enough you’ll usually see another one. Of course, I have tried recording these on my phone, but they have a way of stopping as soon as I press record.

If you didn’t know what you were looking for, they really would look like just a strong startle, but she’s too old to be having such a strong moro reflex (although kids with cerebral palsy do often have a tendency to keep their moro reflex for a very long time, and I suspect Vivian may go on to be diagnosed with some form of CP down the track), and there isn’t anything to trigger them from what I can tell, like there would be with the moro reflex.

We saw Vivian’s neonatal consultant (pediatrician) this week and when we mentioned these to her she said that Vivian will always be prone to seizures, and if at any point they become more pronounced/frequent/uncomfortable for Vivian, then we should definitely bring her in to the Child Acute Assessment Unit.

At what point do we make that call though? Are these suspicious movements impacting on her development? Are they classed as infantile spasms still? So many questions that we don’t seem to get answers for that we need a neurologist to answer. It feels like another way of saying “if the seizures aren’t making Vivian uncomfortable, we’re not going to treat her for them,” like they said when Vivian first starting having the IS.

Our ACC case worker wants the pediatrician to refer us on to our neurologist so she can meet with him and get more information about Vivian’s case. I am going to try to push for answers to these questions from him when we next see him.

In other news, this week was pretty exciting for Vivian, in terms of new things and new experiences.

We picked up a third-hand Steelcraft reversible stroller/pram from a local buy/sell Facebook page. It was only $50, and in great condition, so that is pretty nifty. It can have the seat facing you, or away, which is the main feature we wanted in a pram, because we feel Vivian being able to see us while we go for walks and hear us because she is facing us will be better for her development. We’re still using a capsule & snap-n-go system at the moment, so this is more for when Vivian gets too big for that. Ben took her out for a walk the day before yesterday and she didn’t really utter a peep while they were out. The last time we tried this, she screamed the whole way around the block.

We also got her a new pair of sunglasses that are a bit shorter on her face, so they don’t dig into her cheeks as much. She played in the lounge with the curtains wide open on a very sunny day and didn’t freak out. It was glorious. You have no idea how amazing it was. She spent most of the time playing with the sunglasses, lol.

On a side note, I need to adjust the straps on both pairs though, because Vivian’s head has not really grown at all and they’re a bit too loose on the smallest size, so they fall down. She definitely has microcephaly, which means her brain & skull aren’t growing like they should, as a result of her birth injury.

We bought her a new play gym for Christmas that has a higher contrast between colors than her first one, and a better system for hanging toys on that will allow us to swap out the toys easily. She absolutely adores it and will happily bash all the toys on it to oblivion. She also likes to feel the fabric when she’s on her tummy and spends a good ten minutes scratching it with her nails. It even has a cause & effect toy on it that she’s cottoned on to- a rattle that has an LED light in it that flashes when you shake it hard enough. She likes to kick the arm of the play gym it hangs from.

We also got some really awesome dribble bibs from a crafty momma, made of really snazzy fabric and are nice and thick to soak up all the drool. And a new bouncer from another momma in my due date Facebook group, after ours was *coughBencough* donated mistakenly. I can’t wait to put her in the bibs; made of really snazzy fabric and are nice and thick to soak up all the drool. Vivian used to hate the old bouncer but now that she is more active, she really loves it and was going crazy in it last night. I’ll have to try to get her on video because it’s so adorable. She does this crazy kick to get bouncing really hard.

We also purchased a Baby Shusher from a local baby business, Sleepytot New Zealand. Holy crap this thing is AMAZING. I might have to give it a write up in a separate post, because it’s that awesome. It was really the key to having a very successful outing, which was the biggest win of this week.

Vivian and I had an afternoon play date/meet up with a bunch of mums from my due date group. It’s only the second time I’ve been able to meet up with my due date group, and it was the first time I met a lot of the ladies in person. It was very cool getting to put faces with names and seeing all the babies that I’ve grown to know through pictures and stories.

Vivian only had a few minor hiccups while we were there. She spent most of the time very quietly listening to all the talk (there were about ten mums and their babies present, so it was pretty loud). We spent a lot of time outside beneath a shady apricot tree, and as long as the sun wasn’t directly in her eyes, she was great! I got her to take half a bottle and managed to get her off to sleep for about 20 minutes. We were gone for about 3 hours, which meant Ben could take a nice nap before working last night. It has done heaps in terms of building confidence to take her out by myself without Ben in the car and shows how far she’s coming along with feeding and not freaking out as badly in new situations. Hurray!

Summer Smiles

I also spied her grab a toe for the first time last night. Even if it was for just a fleeting second, I’m sure she’s going to do it again!

What’s new in your world?

Starting Over

We are back to day one, after making it to 5 weeks and 2 days of no seizures. Vivian had some on Thursday morning.  It was a very sad morning for Ben and me. Heartbreaking.

We started weaning her off the prednisolone over the past few weeks. This week, she is down to 2ml a day.

Our neurologist is on holiday  until Monday. The other neurologist, who treated Vivian when she was very young, said to watch her over the next few days before upping the steroids back up to 4ml. We haven’t seen any more seizures since Thursday morning, but now we are back to watching her like hawks, evaluating every movement and cry. We will be calling our neurologist on Monday to see what he says as well. I don’t know what this means for her, or what it means for her treatment.

A lot has happened over the past two weeks, other than seizures.

I’ve gone back to work almost full time. I almost had a panic attack two days in, when our property manager called me and told me we had 6 weeks to find a new place to live. The owner of our house needs to move back in, because he can’t find a place to stay while EQC comes to fix his house…

The only other time I’ve sobbed like that is when we got Vivian’s MRI results. I really at that point didn’t feel like I could do anything. It was just another thing that was happening to us. And it sucks, it really does. It seems like one thing after another keeps happening and we can’t catch a break!

It is really hard to find a rental property in Christchurch at the moment for a similar price, with similar features (allows our 4 cats, stand alone, 2+ bedroom, space for a washer and dryer, not on a main road, dishwasher). We applied for one place but it was out of our budget and they weren’t willing to budge on the rent amount. It is not a renters’ market here due to lack of supply and huge demand, after the earthquakes. Part of me thinks it was stupid to ever come back to Christchurch now. Maybe we should have stayed on the Kapiti Coast.

If we don’t find something by the end of next week, I think we may look at options with shorter leases (there are a lot of rentals with short leases…so I’m baffled as to why our landlord couldn’t manage to find one for himself).

We got to take Vivian to an osteopath last week. It was really very interesting to watch. The osteo was very gentle and it was hard to tell she was doing anything to Vivian at all. When we left, she said Vivian may have a big sleep, a big feed, or a big bowel movement…she did all three the first night after the appointment, which was amazing (in the real sense of the word- she filled THREE diapers, and slept for first a 3-hour stretch and then a 6 hour stretch that night, and had a great feed after a week of crappy feeding). We have two more appointments set up. They are pretty costly, but seem to be worth it.

The osteo advised us to stop Vivian’s gaviscon…because she thought Vivian being on both gaviscon and omeprazole was overkill, and the gaviscon makes many babies constipated.  This isn’t the first time someone other than Vivian’s hospital pediatrician has told us they would treat her reflux differently. Our GP told us he would prefer we slowly wean her off of her omeprazole…but he had no issues with gaviscon. It’s so hard to know who to listen to! We did try her with no gaviscon for a day or two, but she was really miserable, so we are now back to at least two-four doses a day.

After the amazing night we had following that appointment, Vivian has gone back to being extremely unsettled and not eating or sleeping well again…one step forward, three steps back.  Today she didn’t even make it to 600ml. I am worried again about her losing weight now. When she was on the highest does of steroids she was taking closer to 1200ml a day.

We aren’t getting much sleep at the moment because she’s not getting much sleep at the moment. Ben is getting even less sleep than I am and I feel awful about it. It’s easy for people to say sleep when the baby sleeps, but when the baby doesn’t sleep, what the hell are you supposed to do then? I wish she would nap more for him while I am at work, so that he can get more sleep.

On top of that, she still has the oral thrush, which is really coating her tongue and probably her throat- Ben took her in to the hospital for her weekly neuro clinic appointment, and asked the doctor to change the anti-fungal medication she has been on for almost a month. She didn’t want to change it and told Ben to wait a few more days. I don’t think she really understood how badly the thrush could be impacting Vivian’s eating at the moment…and I was pretty upset about her medication not being changed. Apparently oral steroids (and steroid inhalers) can really allow thrush to gain a strong foothold in the mouth, so in most instances where steroids are being used, the drug that is commonly prescribed is flucanazole. I don’t understand why they didn’t prescribe that after Vivian showed no improvement three weeks into taking the first medication, Nilstatin. I called them this afternoon and finally got a prescription for flucanazole, so hopefully that works.

I’ll leave you with a video recorded last week of Vivian babbling to herself babbling…babyception of sorts :) She has gone quiet on us this week, and we’ve not had much babbling out of her. Hopefully she’ll start talking our heads off again when she’s feeling a bit better.

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.

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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