Am I missing something? Naive? Could I be doing more?

[knicksfan]

Dd is now 3.
She was csection under a general anaesthetic at 37 weeks. Born very healthy it seemed at the time no issues due to her being early but they used forceps to get her out and she was injured at the time due to these. Bruising down right side of her face, marks on her face and she was unable to open her right eye for a long time normally. When it was opened at birth for the doctors to check it had bled.

No other concerns at birth.

All milestones late - put down to being early
She's done most things eventually

Now she's hit 3 we're noticing a bigger difference. She walks less steady than her 11 month old cousin. She cannot run or walk long distances (to the end of the street) but she gets around ok indoors.
She can't pedal a bike ect.

Nursery agreed she was behind physically.
We saw HV and found out she had been born with a cataract in her right eye roughly at which point I noticed that it's not just that she is behind physically, one side of her body is actually fine, the right side moves ok but the left side is very weak. She holds her hand up by her armpit and drags her leg behind her.

Gp agreed she has a weakness on one side and referred for physio who confirmed the same but can't explain why. She has a community peads appt but who knows when as waiting list is so so long. I just find it so concerning that she has a clear weakness down one side of her body and we have no idea why? should I be pestering my gp? Be less worried? More worried? Help!

Could she have had a stroke at birth or just before? I only mention this as I know someone whose son had one. I don't want to alarm you and imagine it is very rare. He had weakness down one side but he also had speech and language issues too.

Thanks for the reply @CatherineCawood. My mum said to us last week "do you think she had a stroke". It's not something I'd really thought of I just wish I knew. Its going to be such a long wait for her paeds appt but i just want to know what's going on.

Could also be something like cerebral palsy?

Was it a crash section? What were the circumstances leading up to that? Any possibility that the placenta was failing or her heart rate dropped prior to birth? If her brain was briefly starved of oxygen that would point to something like cerebral palsy.

I’d ask for a referral to a paediatrician, personally. They will ask for a history from pregnancy onwards and will be able to do further tests if necessary.

Oh sorry, I see you’re going to see a paed. That’s good

I immediately thought cerebral palsy when I read your post. Could you request to be put down for cancellations with the peads appointments team to get seen quicker?

The forceps could have caused damages to her brain if it was forcibly enough to damaged her eye !! I would twirst a referral to a developmental paediatrician and for an MRI . ASAP .. if she needs help or a diagnosis best to eat it sorted before she starts school.

Should I be going back to my gp if he has already done a physio and paediatric referral? 40 weeks is a long wait to see somebody?

Sorry for all my typos , I was in the sun!! .. I would chase an urgent referral to be honest . You can pay if you can afford it .

Pedalling a bike isn't something all 3yos can do.

But the weakness is worrying. I'd ask for a referral. It could be stroke, it could be cerebal palsy, it could be something else. MRI should be able to have a look-but she will need sedating for it.

Also get them to check that she hasn't a hip problem or one leg shorter than the other.
I've just been diagnosed with having one leg shorter than the other, and the physio pointed out how that's meant my left leg is weaker as the right has been dominant.

I agree you need to be pushing for a referral.

Being born at 37 weeks is still considered term rather than early so that isn't the cause of any delays it sounds as though something else is going on

40 weeks to see a physio or community paed? That’s madness. My son was referred in December and got an appointment for March.

Where do you live? I am amazed a referral takes that long.

Have been back on to my GP and am chasing with them.
@Haworthia we are in the north west. She has had her physio appt but we were told 40 weeks for the paediatrician.

40 weeks!!!! PALs that! That is utterly ridiculous.

If I were you OP, I’d go back to the GP and mention cerebral palsy as a possibility, just to see whether the referral can be changed to urgent. You might get an appointment a bit faster. Who knows?

No advice but I really hope you & she don't need to wait so long

I'm sorry your dd is having these issues. Just to reiterate what pp have said though- 37 wks is classed as term nor early. My breach dd was born at 37 wks +2 as the hospital was busy for planned sections. I think referring to your dd as born early might be creating a red herring and may cause confusion in getting a diagnosis.

I’m so sorry you’re going through this without professional support. It must be very worrying. My DD was born at 28 weeks and due to this had fairly extensive brain damage on the right side of her brain. We were told it was likely to affect movement on her left side, her speech and result in behavioural issues. She was diagnosed with cerebral palsy at 2 - left side hemiplegia.
I agree you need to push for these referrals sooner. My daughter had an MRI scan to confirm the extent of the damage when she was about 4 months old but had had regular brain scans during her hospital stay.
Hemihelp.org.uk may be a useful website for you to look at. In the meantime (and I’m no physio or specialist but it’s what we were advised) encourage her to use her weak side. Activities such as threading beads or doing stickers which mean she has to use both hands, kicking a ball with her left foot and climbing ladders etc.
I would hope getting in to see either the physio or paediatrician would result in a pretty swift appointment to see the other as it sounds like there is definitely some form of problem that needs addressing.
We have had patchy care. Our physio changed unexpectedly and the new one has put far more in place for DD, refered us to orthotics and went into her nursery so they could assist with exercises there. Please make a nuisance of yourself until you get answers. I’m angry our first physio did very little despite knowing her full history and us telling her our observations.

@B00dyM4ry You're right I think I may have caused some confusion with that.

I know she wasn't preterm, but what I mean is her milestones have all been late and I have always put that down to her being earlier born (than my boy who was 2w overdue).
Like for example when she was hitting the very end of the age expectations for sitting, rolling and especially standing, I would put it down to her being earlier thinking that my son arrived 5 weeks after her and if she had been overdue we wouldn't be worrying for at least another 5 weeks. I never thought anything was wrong.

I obviously don't know the reason but I do think it is due to trauma at birth or maybe a stroke, it's not down to her being "earlier" it's just that that was the reason we thought she did things late initially. That probably doesn't make sense but I think professionals have a good grip of facts, they have just been useless thus far.

@KMoKMo Thank you so much for taking the time to post and for your lovely advice.
I really appreciate it. It sounds like you have had lots in place. Do you mind me asking (if she is old enough) if she is in mainstream school? I just have no idea what to expect.

To add insult to injury, we were referred originally by gp to paeds at the hospital back in May. They rejected the referral due to admin reasons. They said that the referral needed to go to our local community paediatric team (at our local foundation trust) and be sent by health visiting team instead of gp which was then arranged in May and when I spoke to them today no referral has been sent or received so we are back to square one and nobody can explain why.

I'm going to ring pals in the morning. It's a false.

In short yes she will be going to mainstream school. She’s 3.5 now. Her issues appear to be more physical at the moment and she seems quite bright for her age although I think this can change with developmental leaps.
I’d see if you can get her and your birth notes from pals. Also chase your GP, health visitor and ask if nursery can write you a letter detailing what differences they can see. I’d also be ringing the paediatrician/physio weekly for cancellations. It seems the more of a nuisance you make of yourself the further you get. I will try to pm you later if that’s ok.

Can you afford private?

I’m glad you’re going to see PALS and I hope they can speed things up for you. Given that the medical professionals sound like they may have missed something I’d be pushing from that angle to be seen quicker.
IF there is something wrong that they have missed, all the evidence suggests earlier intervention has better results. By them missing her issues they have already potentially held her back and if they now delay seeing her that will add to this. I wonder if this would encourage them to speed things along, given that if she gets a diagnosis that could reasonably have been picked up earlier given your concerns- you’d have a good case for a medical negligence case to fund necessary private physio etc that would only be needed due to their delay. Hope that makes sense.