Tag Archives: Spasms

Mixing Sabril with a Flavour

Top 3 tips on Mixing Sabril (Vigabatrin)

Myself and Emma have seen a number of people mention that their children are rejecting Sabril when it is mixed with water; they’ve ask about mixing Sabril with other drinks, and if this is possible. We thought we would share our experiences and the top 3 tips we learnt.

Tip 1 : Worrying about this is normal

In hindsight I’d like to tell you that freaking out is ok. We did it. It’s impossible not to worry. The fact that you are worrying means that you are concerned about the right things.

The basic tips I have on mixing Sabril will sound like common sense, but I remember how absolutely terrified I was when we brought Mattie back from the hospital. At the time both Emma and I were worried about the seemingly ever increasing cocktail of drugs we were giving a 6 month old. At one point we were giving Mattie one drug simply to combat the side effects of another. Then in the midst of all of this he started rejecting his medication, by rejecting I mean spitting it across anyone who tried to give it to him.

It was around 8pm one evening when Mattie had managed to spray Emma with his bed time dose of drugs when we decided to call the Neuro team and ask for advice. – We panicked, we’d only just got him home and the last thing we wanted was to see him return to hospital because we couldn’t give him his medication.

Tip 2 : A Spoon Full of Sugar Helps the Medicine go Down

It must taste awful. I’m guessing of course as I haven’t actually taken Sabril (Vigabatrin) myself. The Neuro explained that we could mix it with something else to take the taste of the Sabril away. As Sabril needs to be dissolved in water she suggested using a very dilute fresh fruit juice; we used a small drop of fresh orange juice and a lot of water. The Neuro also suggested using cordial or squash, but she warned that these can have a very high sugar content and if we did use it, we should mix it with a lot of water.

How we mixed it

  1. Pour a little juice into an espresso cup / or egg cup. Really just a little drop.
  2. Add water to juice. Make it as dilute as you feel you can.
  3. Using a syringe extract the required amount of liquid you require to then mix with Sabril as normal

The fresh orange juice worked a charm, Mattie loved the mix of orange juice and water. We had weeks of success! – Until he started reject that too.

Tip 3 : Change of Flavour

Mattie started rejecting the dilute orange juice mixture. We spoke to the Neuro about it and she pointed out, the kids – *all* kids eventually get board of a taste. Swapping and changing the fruit flavour will help. And it has. We swapped from orange juice to apple and Mattie was back in business consuming the Sabril without issue – and on occasions actually sucking it directly from the syringe before I’d actually depressed the plunger!

So far we’ve mixed most fresh fruit flavours, and when we’ve run out we’ve used cordial and have, on the odd time, just used plain water. All taken without complaint (so far).

I hope these tips help, and I’ve your tried other ways to dilute Sabril, let me know. I hope that if any other parents are struggling with getting their child to take Sabril that these three tips help.

Mattie feeling better. With out Spasms and Keeping his head up

Mattie – Is he back to normal?

Tuesday 2nd October 2013

“Is this baby ours?” – It’s a question Emma and I asked ourselves as we lay in bed listening to Mattie in the cot beside us. It was 3am, and Mattie had been playing and giggling from 1:30am, and has no sign of slowing down… Maybe he’s hungry?

First Week on Vigabatrin 600mg / day | (54.54 mg/kg)

Mattie has made some good steady progress over the last couple of weeks. Over the first week we saw Mattie’s spasms drop off. It became very hard to tell if he was having them. Mattie’s demeanour changed, he became more excitable and interested in everything around him. We got even more giggles and laughs, it was a joy to see. I hadn’t seen any spasms at all, but Emma, who is still on maternity leave with him, was convinced that he was still having mini spasms.

Slight Spasms

The spasms have changed in nature, they’ve gone from a full on sequence of jerky movements, like we’ve recorded in our initial blog post, to something much more subtle. A head jerk, or an odd eye role, twitchy movements of hands, movements repeated for a long time. The repeated movements reminded me of watching people high on ecstasy dancing in a night club, the repeated dance steps, were like Matthew’s repeated head movements.

But eventually over time even these movements have become less frequent, and ness noticeable. To the point where we end up asking ourselves, “Was that a spasm, or has he just startled himself – like a normal baby?”.

Check-up Monday September 23rd 800mg | (72.72 mg/kg)

The plan we agreed with the doctors had always been to increase the dose of Vigabatrin on a weekly basis until it reached the point where Mattie’s spasms had disappeared. This is something both Emma and I are careful to watch, as I mentioned in a previous post the side effects of Vigabatrin include possible permanent vision loss. We used Mattie’s weekly check-ups as the opportunities to assess the need to increase the dosage. As I hadn’t seen any spasms I was reluctant to increase the dosage, but right there during his check-up he had two spasms, and they were witnessed by Emma and the nurse. This was ultimately bad news, but it was great to have someone else there to see them happen. They had become so slight that it was getting increasingly difficult to confidently spot.

Check-up on Monday September 30th (dosage / kg)

Over the course of the week since the last check-up Mattie has continued to improve. He became more alert and more crazy! – Giggling laughing, and physically a lot more active. It’s as if he’s a super charged car, which has been driven with the handbrake on, now it’s been released he’s zooming away. At his check-up on the 30th he got the all clear from the nurses and it was agreed that there was no need to increase his dosage.

It is still very hard to be sure that he is not having any more spasms. He’s so very active, we had thought his older brother Ben was active, but this is on a different scale all together. That it has made Emma and I wonder if the over activity is related to the Vigabatrin, or the Infantile Spasms themselves?

I would like to have another EEG, just to prove that the hypsarrhythmia has gone and that Mattie’s back on full form, but we had agreed with the consultant that it would not be necessary as the consultant said at the time it wouldn’t provide him with any additional information. But the more I think about it, now, the more I find that hard to understand. If the original idea had been to treat the EEG (the hypsarrhythmia) and that the removal of spasms would be an indicator that the EEG is back to normal, well then, now… when we’re not sure that the spasms have completely passed, and we’re struggling to tell, – isn’t it now a great time to check with the EEG? It is something I feel I need to raise with the consultant, just to be sure.

Wednesday 2nd October

Emma had searched the internet and learnt that the jittering and excited-ness is also a side effect of Vigabatrin. Perhaps with would explain Mattie’s excited-ness during the nights?

The Bug Strikes…

We’d just sat down in front of the TV, both boys where in bed and all was quiet in the house. When I heard it – a cough. “The cough” which changed what was to be a relaxing evening, complete with some down time to update this blog, into another all night sit up. Except this sit up was to be one most parents are familiar with. The winter vomiting bug had arrived and poor Mattie was the first in the family to come down with it.

I headed up stairs to find Mattie awake, and smiling in his cot, but all around him was a halo of vomit. Poor guy.

We’d been told that Mattie’s immune system would be compromised after taking the Prednisone, and it would take some time to recover. We’d also been told that if he gets anything like a vomiting bug that we were to not wait around like we would if it was Ben, but to get in touch straight away. So after cleaning Mattie up and bringing him downstairs I called Temple Street and spoke to the on call medical registrar. After explaining Mattie’s background she told me that the intake of fluid was important, and to try Mattie on some dioralyte. Assuming he could keep that down he would be doing well. If he was having any trouble with taking fluids that we should seek help straight away.

We started the Dioralyte that evening, giving him small drops every 10 minutes. Within an hour we had a full “exorcist” baby moment and everything came back up. However the next hour went much better and eventually Mattie fell fast asleep.

Thursday 2nd October – Docs check-up all ok, you can relax now.

The next morning Emma took Mattie in to see the GP. He got the once over and we got some reassurance that he was OK. The doctor was telling Emma that now the treatment is starting to work for his IS (touch wood) we can start to look forward to treating Mattie just like any other baby. It was great to hear this, and I guess after all of the stress of the last month it still seems a little odd to treat him normally.

Friday 3rd October – Is this the return of Infantile Spasms?

Mattie woke early after a restless night. He was still tired from the day before and his little system is probably recovering from the bug.
Emma was with Mattie, when the spasms returned. Five in a row, slight, but definitely there.

In the morning Emma called and spoke to the Neurology Registrar at Temple Street. Normally a spasm would trigger an increase the Vigabatrin dose, however the Reg suggested that we wait. See how it goes over the next day or two, was this a once off? Or is it a trend? – Only time will tell. If Mattie appears to be developing normally than there isn’t anything to worry about, yet.

Saturday 4th October

Today was a great day, Emma and I cleared out the nursery and got Matthew’s gear moved in. Tonight Mattie spent his first night in his own room. To achieve this Emma and I both needed to get stuck into all of the junk that had been deposited in the nursery. Emma’s sister had offered to look after Mattie, while Ben got to hang out with his Grandfather. It was great to get a second pair of eyes on Mattie, to get a different perspective, and apart from Mattie still recovering from his tummy bug, and his appetite being less than before there really wasn’t anything to report. . . a normal baby once more.

From speaking to other parents we’ve met via Facebook Emma discovered that often an illness will bring back some of the spasms, but this is normally due to the baby being under some increased stress because of the illness.

It was also a huge milestone for us as a family, Mattie got his first night sleep in his own room, and we got the first night in our room alone.

Sunday 6th October – More Spasms?

Matthew was just sitting in his new bath chair, in the bath. Holding him tight I reach up to wash him with a sponge, when he jumps, back straight. — Was that a spasm? The rest of the day had been normal. Nothing unusual. Mattie had slept well in his own room, and the only news to report was that his appetite still isn’t 100% – but then perhaps we’re just seeing it return to normal after the Prednisone has worn off.

But after his bath, as Emma was getting him ready for Bed Emma thought she saw two more spasms. We think we did, but it is just so hard to tell.

Mattie back in hospital and not sleeping for Mummy - it's time to play!

Matthew’s Back in Hospital

Back to Hospital

Monday 16th of September

The house feels empty and quite. Ben is in bed sleeping and I’m typing away in the study. No one else is here. Matthew is back in hospital and Emma is by his side. All down to a routine check-up, that wasn’t that routine, and a small factor which started at his check-up last week…

Tuesday 10th of September (Check-up Last Week)

During Mattie’s check-up he had his blood pressure taken. It was 118/70, high and the nurse and doctor seemed concerned. It appeared higher than normal in the hospital when he was last admitted however this time it didn’t seem much of a concern, so little of a concern in fact that I didn’t mention it in my last note.

Spike of Spasms

Confusingly the start of the Vigabatrin seems to have resulted in Mattie having more Spasms, not less.

Matthew's Spasms and Medication Charted

Matthew’s Spasms and Medication Charted

The Vigabatrin comes in sachets of 500mg, we’ve got to give him two doses of 200mg. Tuesday night we got our dilution calculations wrong and gave him 20% (1 fifth) and not 40% (2 fifths) we should have done. We corrected that for the next dose on Wednesday.

At the same time that we introduced the Vigabatrin we reduced the steroids. The increasing in spasms has gotten Emma and I both quite concerned; the steroid reduction wasn’t significant enough to have resulted in the rise of spasms, so why has it happened?

Cranky Baby Week

The change in medication also heralded the start of “Cranky Baby Week”. Ohh my word… Mattie would cry and scream almost constantly. As soon as we put him down he would start to cry. The crying sometimes marked the start of spasm cluster. With Ben, as I guess with a lot of babies, once we knew he was OK and that nothing was wrong we’d let him cry it out. But for Mattie with his spasms, we felt that that really wasn’t fair.

To top it all off Matthew has continued to teeth like mad, with bright flushed cheeks, and his fingers almost constantly wedged into his mouth. Dummies last about 5 minutes before being spat out and the crying returns.

The crankiness continued from Wednesday all the way through to Saturday morning – none stop. Emma is a rock star and kept a brave face through it all but it really wasn’t fun. – This really was Teething on Steroids.

Worried About Spasms

By Thursday afternoon Emma and I had grown very concerned about the increase in spasms, so much so that we decided to get in touch with the hospital.

Spasms Return in Intensity

Mattie back in hospital and not sleeping for Mummy - it's time to play!

Mattie back in hospital and not sleeping for Mummy – it’s time to play!

Up to this point we had seen a drop in the spasms. The strong, intense spasms we saw before going to the hospital had vanished; they had been reduced to a spasm which looked more like a little startle, and we’re getting hard to spot. That was until the new treatment started.

By 10 am on Thursday morning we had noticed several individual (not clusters) of spasms, more than we saw before the change in medication. They were “full on” intense spasms, like the ones we saw before his medication started.

Could this rise in spasms be related to the Vigabatrin? Is it too early to tell?

11:21 AM – We’re worried enough to call Temple Street.

I got through to a registrar who works for another lead doctor, not the head of neurology we had been seeing. I explained what we’ve seen so far and the doctor on the phone explained that, that was not what they would expect to see. She is going to talk to someone on our doctor’s team. The doctor on the phone took down my telephone number, and thanked me for calling to let them know. Now we’ve just got to wait and see.

3pm (ish)

Got a call from a registrar from our normal doctor’s team in Temple Street. The long and short of it is that the new drug won’t cause the spasms. It seems that the steroids were not as effective as we hoped. The presence of spasms now suggests that the spike is coincidental. The reduction in the steroids so far isn’t enough to have caused the spasms to return either.

Trying to Introduce Normality

The spasms and grumpiness continued right through Friday and only let up a little on Saturday when we did a family trip to the zoo. It was great to get out of the house and try to do something normal as a family.

I think that Independently Emma and I had reached the same point. For me it came while washing and sterilising bottles, I looked down into the sink and realised I wasn’t sterilising bottles any more – I was sterilising the syringes we use to give Mattie his medication. It was a very depressing though, I never thought I’d be putting more syringes in the steriliser than baby bottles. I found this upsetting. After feeling sorry for myself for at least a good 30 minutes I decided to give myself a good, mental kick up the arse. Being upset about it wasn’t going to help anyone. With Ben’s birthday coming up there was plenty to look forward to.

The trip to the zoo was a welcome reminder of normality. The trip also appears to have been a watershed moment for Mattie; his grumpiness seemed to reduce after this.

Small reductions in spasms and grumpiness continued over the weekend and by the time Mattie arrived at the hospital on Monday morning he was all smiles and giggles.

Emma and I were both looking forward to chatting with someone face to face about Mattie’s spike in spasms and what has been causing it.

Monday 16th September

Mattie back in hospital and not sleeping for Mummy - it's time to play!

Mattie back in hospital and not sleeping for Mummy – it’s time to play!

When Emma arrived at Template Street for the check-up she discovered that the consultant we are seeing was out on vacation and the registrar that we had been seeing was also out.

Emma and Mattie were only in for a check-up by one of the nurses so that wasn’t a big deal. During the check-up the nurse took Mattie’s blood pressure 4 times. It was high, very high – at one point 140/90. To put that in context a baby’s systolic BP (the top figure) should be (usually) somewhere between 70 – 90. The nurse asked Emma to stay close to the hospital while she got hold of a doctor to check out Mattie’s stats.

Emma had planned to go out shopping for Ben’s birthday in town anyway, so this worked well. The nurse said that they may want to see Mattie again after she had spoken to a doctor.

After about a week of a really, extremely cranky baby Mattie seemed to be in a much better mood today. He was playing and “goo-ing”.

The nurse explained to Emma that a side effect of the steroid (Prednisolone) is agitation and restlessness (cranky baby). But this side effect doesn’t hit straight away, it arrives after about two weeks of starting the medication. Apparently it catches a lot of parents by surprise. It’s nice to see that it has eased off a little.

Emma called me over lunch

I’ve just heard back from the hospital. They want me to bring Mattie back in. The nurse said that we should be prepared – they might need to admit him for observation while his blood pressure is so high, They want to see if his blood pressure as settled since we’ve been out and about.

Mattie’s admitted

After returning to the hospital Mattie had his blood pressure checked again, it was still high, too high. Mattie was admitted and given medication to bring his blood pressure back down to normal. Additionally the doctors are looking and speeding up weaning process to get him off the Prednisolone (steroids) more quickly than we had originally expected. Then, just to confirm everything is OK Mattie is scheduled for a Doppler exam on his heart tomorrow. The Doppler exam should tell us if there has been any damage to his heart from the high blood pressure, of if, there is anything wrong with the blood flow which might be causing the higher blood pressure. The doctor’s aren’t expecting to find anything. I hope they don’t either…