consultant appountment - what should i ask?

[golemmings]

DS is 3 months old. He got stuck during delivery and had to be resuscitated. His apgar scores were 3 and 6 at 1 and 5 mins. At 3 hours he was referred to neonatal with poor tone and q weak cry. he had a couple of fits following admission. No infection was found and his brain mri came back normal.. initial diagnosis once meningitis was ruled out was mild encephalopathy.

Since then his development seems to be on track. He smiled at 5 weeks , kicks, waves, can follow a moving object, turns to find sounds etc. He is occasionally stiff and the hv has referred him to the community physio.

We have his first consultant appointment on Friday. Anybody got any ideas what kind of questions I should be asking?

I'd like to know:

If there is any explanation for the fits
If there is any risk of brain damage with a normal mri
If he is likely to have any special needs, if they fan tell me at this stage
Whether they will keep him on their books for future review

Anything else I should be asking?

My DD had a similar start but with damage shown on her MRI. I think zzzzz has given you some brilliant advice and your DS sounds like he is doing really well! The physio referral will help if there are any issues that do arise with his physical development.

We were followed up until DD was 2 and then referred to community paed. By this time we were safely plugged into the physio, OT and SALT system and also had a fairly clear picture of how DD was likely to be affected by her brain injury.

Your questions are a really good starting point although do be aware that they hate being asked about future predictions and are likely to fob you off or give you things you will worry about that may/may not happen (IME anyway!). The most important thing is to have the referrals just in case.

go I agree in thinking that zzzzz is giving good advice. At 3 months and a 'normal' MRI I doubt much can be offered re long term outcomes/diagnosis etc and most likely consultant would adopt a wait and see approach.

If your community Physio has lots of Paeds experience or is a Paeds specialist s/he will probably be able to give you good advice once they know your DS. A good Paed Physio will be a valuable resource for you.

If you can identify a particular time when he stiffens and even video it that would be useful information for them.

In your shoes, I would probably be insisting that they keep him on their books to review regularly until he is 2 given his rocky start.

Thank you all. That's really helpful.

When I say stiffness its not seizures. His stiffness in his legs comes from reflux but when he's sore they go sufficiently rigid to be weight bearing. His arms stiffen in a "i don't want you to put my clothes on" kind of way but it is really hard to bend them. I don't think he's stronger than me...

Re the hv, she's actually fabulous. Very proactive, and has effectively tried to position herself as our advocate, ensuring we understand everything we've had in writing from gis consultants like his discharge letter and tracking down my hospital notes to ensure that she fully understood what happened at the birth.

The other person we have seen is a cranial osteopath. She has got to know Alex well and has a post grad in paediatrics, spending a couple of years working in nnus. She first spotted the reflyx

Oops..

Reflux even but isn't plugged into nhs services whilst the hv will give us anything we ask for. At the moment the osteo makes recommendations and I can secure them through the hv.

The gps haven't been terribly helpful. It took 3 visits to get Gaviscon for the reflux and I'm not sure any of the gps we've seen have read his neonatal discharge letter. At the 6 week check the gp wasn't terribly interested un Alex it my sore stitches but was mostly concerned with my mental health because my

Again. Grr

Mum had recently died. Tbh at that time I was far more concerned about my baby's future development and potential health needs. Depending on what the hospital say I may have to build a better relationship with the gp I think.

I like the idea of keeping him on the hospital's books for a couple of years though. Let's see what they say on Friday.

Ask for a physio referral. I am willing to bet that you will get 6 monthly pediatrician checks which will go down to once yearly as they are more confident about any ongoing issues.
They will be monitoring his developmental delays and his difficulties with muscle tone
We didn't bother with a repeat MRI until dd2 was 4yo, but tbh we knew she had cerebral palsy by then and so it was more to find out whether/ what brain damage there was.
The absolute most important thing you (and Alex) need now is a proper physio referral. Honestly. Our first consultant told us the physio would be the most important person in dd2's early years and he was absolutely right.
As an aside, brain mri's done in the first couple of days can be notoriously unreliable for milder brain damage. Dd2's was done on day 12 and they told us there were 'soft' signs of hypoxia. Her presentation was quite different different to Alex's though(she was in scbu for 5weeks) and she was really v poorly.
The muscle tone difficulties are really the first sign of cp(particularly after birth hypoxia and neonatal seizures) so you need to make sure you a not being fobbed off by a hospital that doesn't want you to start thinking about medical negligence...
Her repeat MRI at 4 showed very clear areas of brain damage which match that expected during birth hypoxia. She had appears of 1 at 1 and 5 at 10 (they had already crashed the pads for resus before she was born as she was down to 28bpm)

Sorry, I know you had very specific questions.
Yes there is a risk he has brain damage.
Yes, there's is a risk of some sn (the high muscle tone is also called spasticity)
Yes you should be followed up. As above. Every six months at minimum.
And you want a physio referral. Now. Motor skills can be vastly improved the earlier you start working on any concerns. And if it turns out he doesn't need the physio, no harm done.

But I suspect this will all be done as a matter of course tbh.

We also saw a cranial osteopath btw. And dd2 had notorious feeding issues. Tbh I think a lot of the 'reflux' she had was down to difficulties with muscle tone too.

I'm really sorry if I've been too blunt.

No one at the hospital would tell me anything initially and it was all 'oh, isn't she doing well?' and 'we'll have to wait and see, let's just see how she gets on'. They dx her with developmental delay initially, but the consultant told us to apply for dla at 6 mos. and by that point I had done enough googling to know that she had cp, whatever they said. She was eventually dx with spastic quad cp just before her second birthday, because I asked what her dx was.

We asked for a repeat MRI at 4 because her muscle tone had changed so much ( she was no longer high tone, but more low and sometimes fluctuating) and she was re-dx with athetoid cp by the neuro who reviewed the MRI and her current clinical presentation.

I should add dd2 is now, has always been in mainstream ( she was statemented with 1-1 support from nursery through) has an iq of 142, skis, hikes, goes to brownies, ballet, has an adapted skateboard, and wants to learn to climb. She also has cp, but that's just another part of her.

Your story just had a few echoes that I recognized- an attentive hv, a consultant, a hospital claiming everything was hunky dory, and a gp avoiding the issue...

Make sure you get a physio referral.

Thanks out. I think that is equally comforting and scary.

I'm really not looking for anything to be wrong with Alex and I hope beyond anything that there isn't but I contingency plan and I'm far happier with an understanding of the worst case because if I can understand and put things in place to cope with that scenario then I know I can cope with anything.

DH on the other hand is part man part ostrich and will only deal with things that really exist and only when he had to so its fabulous to be able to come on here and even contemplate a less than perfect outcome. I get support and advice and he doesn't have to discuss it!

Ah, the ostrich scenario.

Hopefully all will be well and dh won't have to remove his head from the sand, but it can be a long wait until you are sure one way or another.

(am normally madwomanintheattic btw but have been locked out of my username) there are a few of us on a cp thread if you need us in the longer term. Hopefully not, but at least you know where we are. And he's doing so well that even if he does have some lasting issues, they are pretty much guaranteed to be mild. X

And massive apols for bizarre autocorrects. Am trying to get to grips with new iPad and it keeps inserting random caps and letters....

And good luck for your appointment tomorrow. Is dh going?

Yay! We both went with Alex and the news is brilliant. The consultant was fab and drew pictures of everything to illustrate his point so we have a good understanding of the brain, what was seen on the original ultrasound and an explanation for it. Basically there seem to have been 3 largely unrelated things - poor tone (shock) abnormal movements (but you can't really guarantee what's normal in a neonate) and dodgy blood chemistry (one of those things) which led to a diagnosis of mild encephalopathy. Also learned (just in case anyone wants this for future reference) that for mild encephalopathy it is expected that the brain will regenerate and there will be no longterm issues. If its defined as moderate, in most cases the brain will regenerate although in some cases there will be lasting damage and severe encephalopathy will leave an individual with a range of issues.

Because Alex was diagnosed as mild and is not showing any developmental delay they will monitor him for a year. I'm thrilled by that response. Thank you all for your help and advice though.

that sounds very reassuring. are they doing a physio referral for his issues with muscle tone though?

brains are completely amazing. after being told dd2 was fine (with a pretty much clear mri but questions over hie) her development was obviously very much delayed, and we were told she would be unlikely to talk/ walk etc. she does both and lots more, and i credit it entriely to the early intervention she received from phsyio etc. brain plasticity is so amazing when they are tiny - it's why intervention as early as possible is so important. the longer you leave it, the more difficult it is. they used to think that there was a window of opprtuinity for new pathways to be made, but now they seem to think that it does continue throughout life, just is easier and quicker in v young babies and toddlers. dd2 learned to move her tongue laterally in one direction this week, which at 8 we weren't expecting. she manages fine, but we realised about 4 that she had no lateral movement (after 4 years of speech and language therapy lol )

hopefully it will all be absolutely fine. as a word of caution, we were told exactly the same thing things about dd2's odd muscle tone and her abnormal movements ('well, we don't really study 'normal' newborns, so it could all be perefctly normal' 'we hope she'll make a full recovery' 'we'll keep an eye on her' etc). it was only at 6 months when it was clear that her abnormal tone had not disappeared, and her odd movements (she had a slight tremor to one arm) had not disappeared, that we were told to apply for dla. it took another 18 mos for a dx other than developmental delay... was it a neuro consultant? or a regular paed?

who will you be seeing over the next year? how often are they seeing you?

well done alex though, he's obv doing v well

sorry, i realise that sounds v doom and gloom again - there are v obvious differences between dd2 and alex as well - she didn't smile until way past 6mos etc, so i don't mean to overstate similarities

good luck, he sounds great x

Golemmings - am pleased for you sounds very positive

outofbody - can I ask, as your dd sounds as though she has some similarities with mine whether you saw much further physical development/improvement after the age of 4? My dd is doing well but still has low tone in her trunk - worse some days more than others. I also notice she has some extra movement in her shoulders when doing fine motor tasks, not exactly a tremor but affects her accuracy iyswim. Does your dd have any difficulty with fine motor tasks or writing? Hope you don't mind me asking - am just not sure how much more progress to expect!

yes - we saw most developmental growth between 3 and 4 tbh, but she's still improving all the time. at 4 she was still using her croc walker for playing, although she could manage indoors, and she had supportive seating for yr r.

she has low core tone - when we get phsyio they always want to work to improve her trunk tone, and the low tone in her trunk means that her fine motor was pretty compromised. (it was improved by the supportive seating for school, so that 'freed up' her hands for fine motor iyswim.) she does have low tone/ hypermobility in her hands though, so around 4/5/6 they were doing lots of ot towards pencil work.

the shoulder thing is quite common i think - with tone issues. dd2 used to use her shoulders to 'speak' - they would rise every time she was talking .

she's 8 now, and they are probably going to go back to more supportive seating at school (she's yr 3, so managed without for yr 1 and 2) and they are pretty much moving her towards ft netbook use. tbh we anticipated that might be the case - the original ot wrote it into her statement for yr r, so that it was recorded that this would likely be the long term solution. she manages ok with pencil work, but it isn't particularly legible and it is laborious.

we used 'junior caring' cutlery, which was great for her, but she manages with a regular knife and fork now.

she's improving all the time though. try and find a ballet class dd2 loved it, she started around 4 before she had standing balance, and it has been great for her core stability and tone. and her skiing has improved soooo much even just in a year - it's amazing to see the difference tbh. because it's something she hasn't done for months, to see her now is incredible. makes the improvements more noticeable.

Thanks out. we saw a locum who was standing in for one of the neonatologists who is off sick following surgery so I'm not too sure what his background is.

I'm going to Chase up the hv's physio referal on monday. they're seeing him in 4 months by which time he should be sitting up, and if he's anything like dd, crawling too. So far he's hitting all his milestones - smiled at 5 weeks and rolled from side to front today. He's been able to roll back to side for a while but today he managed to untangle his arms for the first time and looked very proud of himself!

I will continue to keep an eye on him but hopefully all will be ok. I may be back with more questions as time goes in though!

Thank you outofbody - that does give me hope

School are thinking laptop for DD in the longer term too - we have been referred back to OT.

We did try ballet but the class was awful - they all took it really seriously and DD just doesn't have the balance (she still can't hop). We've found riding to be great for the core tone - I am sooo impressed that your DD does skiing

I just want a crystal ball TBH - I know DD will be affected 'forever' by her injury but just want to know how much will/can improve in the longer term

She does two blocks of riding a year as well -just 5 sessions in each block, but she loves it.
We were lucky and found a really good ballet class. And her class now is purely recreational, no exams at all. This year she decided she wanted to try tap and jazz as well... At Christmas she decided tap wasn't really working out (go figure) but tbh she needed to find that out herself. She's becoming a bit more aware of what isn't going to work, I think. She loves the jazz though. I think we've probably only got another year of dance if I'm honest, before she realizes just how wide the gap is and decides to stop, but she's doing so well in stuff where her disability isn't such a big thing at hopefully she won't be too gutted. She loves to dance though, and dd1 dances competitively, so it will be a big thing for her to decide to stop.

Aw, lemmings, he sounds grand.

Gosh; just found this. January seems a very long time ago. We're off tgo see the peads for follow up on Friday but there's no sign of developmental delay. He sat at 6 mo, he can get on all fours, and wriggles/comando crawls when he wants to get to something, his hard consonants are coming in...
We did see the physio - it took a while - by which time his arms had mostly sorted themselves out; we'd done a lot of massage and patterning and the only outstanding issue is very curly toes. When he stands he tends to curl his toes under and stands on the tops of his toes and rolls his feet out so we'll get that checked. Otherwise he's absolutely grand!!