# Ankle Clonus



## Mistletoe (Holly)

I am worried sick.

My baby was born by elective c-section at the end of June and had great Apgar scores of around 9. However, the first week I tried to exclusively breast feed, which I now bitterly regret as it turns out Charley had a significant posterior tongue tie and I had very little milk supply due to the surgery, 1l blood loss and his inability to stimulate supply.

Everyone missed the signs I was reporting of severe dehydration, ketosis and jaundice. I am an ICU pharmacist, so was I think labeled an over anxious first time mum. I was given lots of breast feeding support and everyone was trying to be kind and reassuring, but my instincts told me things were going wrong. I did not really know what to do in my post op, exhausted state, and I listened. I so wish I hadn't.

He lost 20 oz in week one and at age 7 days he was admitted to level 3 SCBU, put on double photo therapy for a bilirubin level of 437 and given intravenous 10% dextrose and NG feeding.

I have noticed shaking of his feet in dorsiflexion. It happened a few times spontaneously when he pushed his feet out in a baby grow or on my leg, and since I have been able to reproduce it regularly when he is relaxed and I dorsiflex his foot. I believe this is ankle clonus. It is quite sustained and can be a few beats up to 20-30.

I have read some stuff that has not reassured me - the study of 169 infants that had sustained clonus anytime before age one, if more than 8 beats (49 infants) it signalled cerebral palsy in all of them. Other things that say more than 5 beats is always abnormal.

Can it ever be normal? Some places also say observe until 5 months and it might resolve.

He seems developmentally normal in other respects - holding head up, including in tummy time, trying to lift chest and can sit with me supporting him. He has developed the assisted standing reflex and is socially smiling and trying to make noises/ mimicking poking tongue in conversation style with me. He appears to be able to see and hear and loves stories and rhymes. The arm movements are still very jerky, almost constant when alert and uncoordinated, which is another slight worry, and his tone is if anything hypertonic. He still has quite a strong startle.

I have an appointment with the GP next week and I have a follow up at the paed clinic end October.

Any thoughts? Am I likely to be labeled neurotic again if I raise this now? Is there anything I can do to improve things early on if it is a sign that some damage was done with the hyperbilirubinaemia?

I suppose I am just looking for reassurance that it is right to raise it and maybe some hope that it can be nothing to worry about, although I know no one could say that for sure. Also for there to be something I could do to improve the outcome if it is something to worry about.


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## nichub

Hi Hazel, sorry to hear that you have had a bit of a rough time, I will get some info together for you (my husband is actually a very experienced neonatal icu nurse so I'll see what he thinks too) and get back to you, I also only just got back from my holiday about an hour ago so I'm slightly disorganised at the min but I won't forget to look into it for you
Nic
Xx


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## nichub

Hi Hazel, I have discussed this with my dh, I don't think your being neurotic at all as you have your instinct to go off, I thinks it's very positive that he is meeting all milestones, as for going to the gp again whilst waiting for your paeds appointment to come through, I don't really think they will do anything differently than they already are, you could also suggest when you go to your appointment with the paediatrician a possible referral to neuro/neuro physio, but again Hazel it's definitely a good thing that he is meeting milestones and doing all of the things you mention, so please try not to worry he sounds like after a rough start he's doing well 

I hope the appointment goes well and please keep me informed

Nic
Xx


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## Mistletoe (Holly)

Thank you.

I am just so bloody angry about the whole thing. It wasn't meant to be this way after all I went through to have him. To have him potentially damaged in his first week..... I feel so sick and guilty that I did not put my foot down at the time, or give up the trying to exclusively breast feed. All very well with hindsight.
I want to just enjoy for the first time in my life, not have to worry. Why me, again?


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## nichub

Poor you Hazel , please try not to worry and you definately should be enjoying this time as your little one sounds to be doing really well, I was just wondering did they transfuse him?? 

Nic
Xx


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## Mistletoe (Holly)

No, he only had double phototherapy. When we first got to hospital the level was between phototherapy and transfusion line on the nomogram that they did on the machine in the ward.

The SHO who examined him felt his neuro examination findings at that stage, tone etc were normal, although I overheard one of the nurses saying on the phone that they thought he was a bit lazy. 

They said double phototherapy was enough, and that three light boxes was the max. They put him on 50ml/kg per day NG and 100ml/kg/day IV 10% dextrose initially and built up the NG feed over 3 days. He was dehydrated and had hypernatraemia too - 152mmol/l, which normalised in a day to 144. He had a cranial ultrasound 2-3 weeks after discharge that was NAD.

The bilirubin level from the lab was higher than the ward test - TBR 437, but they just continued with the phototherapy as by then it was showing a decline in levels on the ward test.

He did need 2 days of phototherapy though. At one point they dropped it to single light box, but the level rebounded a little, so they increased it again to two for a few more hours.

I am wondering if they should have transfused him. What do you think?


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## nichub

Obviously all hospitals and professionals have their own practices but in my experience once the bilirubin hits the transfusion level we would transfuse but like I say they may have had reasons not too, you could ask that question though

Nic
Xx


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## Mistletoe (Holly)

My 4 page epic letter about all the failings in week one was sent in to the complaints department this week after I worked on it for 2 months.   

I thought SCBU were our life-savers literally. I am now a bit concerned that perhaps things weren't treated aggressively enough in SCBU? 

I guess this is all going to come out in the investigation. May be I should question week 2 on SCBU too?
It is all evidence for later should we need it.

This is the hospital I was hoping to get a job at after maternity leave as the one I work in currently is too far to travel to really. I worked at this Trust previously and hoped they might find me a job that suits motherhood.  

Hope all this doesn't get really difficult.
More than anything I hope my perfect little boy is OK.


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## nichub

I'm sure he will be Hazel he sounds like he's doing well now and you really should try to enjoy being a mum, I will be very interested to know how you get on so please drop me a quick message to let me know

Nic
Xx


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