New and bewildered. (Long)

[AuchAyethenoo]

Hi all, to be honest I'm not even sure where to start.

Literally just last Friday our little squidge turned 6 months so I thought I'd just casually look online at what milestones to be looking for (slow morning) and some issues cropped up. The main one being that she crosses her legs without exception when picked by her trunk.

We had obviously noticed it before and thought it was quite cute, very ladylike. Apparently not.

I obviously then had to google EVERYTHING and all without exception was discussing cerebal palsy, I thought, well she doesn't have any other markers. She can sit unaided (though I couldn't leave her alone) she can roll but only from back to front and only on a soft surface that 'helps' her. After a bit more investigation it appears she may be showing other issues though:

Could not fully support her head until roughly 12 weeks old.

She has a continuation of her primitive reflexes I.e - Moro, tonic neck reflex.

She shows a hand preference.

She does sustain weight baring stance.

When held prone she can't sustain her legs midline (parachute reflex).

Holds hands in a thumb in fisted position.

She was born at 39 weeks, weighing 8lbs 14oz. She was born with her cord around her neck and required oxygen at birth but no stay in scbu. She developed jaundice at 12 hours old which was tested at 1 day old and was high at 135 but the pead then noticed a transient murmur so was more worried by that, squidge was never retested before discharge.

We were discharged at 3 day PN, on day 4 the MW attended and I brought up my concerns with her jaundice, the MW said she was fine and to put her at the window, I expressed concern that she was very sleepy, the MW then said the test for jaundice is very painful and invasive, did I want to put my new baby through that unnesecarily? I of course said no.

Day 5 a new MW came out I again expressed my concern over squidge's jaundice saying she had had it practically since birth. The MW was worried and took blood. Squidge's level came back at 370 (severe jaundice) she had to be readmitted to hospital, straight to scbu. By the time we got there, 1 hour, her level was 472.

She was given single phototherapy for 14 hours, given 3 blood tests the last of which showed a small decrease at which point they stopped the phototherapy.

She developed RSV at 6 weeks old, was on oxygen for 5 days. She's not had an easy time.

We saw the GP on Tuesday who has referred squidge to our local child development service, but has said it could take up to 12 weeks for and appointment!!

I'm not sure what the point is in this post, but I just had to get it all out.

Whoops, make that VERY long.

Sorry, whilst at the GP's, she said she noticed some weakness in her left side and said that she felt she was borderline between late normal development and abnormal development.

You think that there is a problem, but you're not sure what exactly. Instincts and circumstances are pushing you in a direction where you want a paediatrician to look at her. You say that you've been referred to the CDC, to see whom exactly? Can you go back to your GP with a name of a paediatrician that you want to see? In the mean time I would see if you can self refer to Portage to get a Portage worker to come out each week to support you with DD. A good one will help you with developmental milestones, and offer support as they see lots of children with a multitude of disabilities or developmental/behavioural issues. here
I would also ask to see a physiotherapist about her posture and see if they can offer support. The GP will refer you to the Physio.

I've got no idea who we are being referred to, we had our appointment on Tuesday, I called the GP today to ask if the referral had been sent and it hadn't even been typed up yet!

I called up the development service to ask if they accept self referral to ask if they would accept a self referral but they said all development referrals must come through a HCP (with the exclusion of OT).

I've never heard of portage but I will look at the link, thank you very much for that. I will look into the physio aspect also.

I've been there myself, and it is worrying but it's the sensible thing to ask questions now and get her under a paed's radar.

Hi Auch

It could be nothing. But it's better to get on the paediatrician's radar than not. See if someone can help you with any excercises you can do while waiting. If you can go private then definitely do that.

Hope it's nothing.

Take care

Do you have any local drop in clinics? Physio, OT. As soon as we noticed something amiss we went to our local SALT drop in and got a much quicker referral than we did via our GP. DS was a little older though.

Physio and portage are worth chasing as a priority, as they'll give you things you can get on with right now. I'd say they are more important in the short-term than the appointment with the paediatrician / child development centre. Diagnosis (if applicable) can come after input.

And if you've 'unnecessarily' done some physio etc to correct motor abnormalities that would have settled spontaneously: so what, plenty of people spend time teaching their perfectly fine babies lots of fun but unnecessary stuff (think Gymboree, baby sign, speaking Mandarin, playing Mozart, Aquatots) and it doesn't seem to harm them

The 'triage' drop-in sessions mentioned above are worth checking out. Children's centres will usually know if they exist locally, if not, try the HV. And if your OT take self-referrals, do that straight away. They often know odd stuff like which toys best encourage thumb function. And seeing any therapist soon may short-cut some of the tedious waiting-list crap.

Agree with mumudelulu. I would go see the OT as they take self-referrals. You have enough to go on with your concerns.
If there s an issue there, a Paediatric OT will see it and may be the 'door' to the rest of the team.
At the very least it will ease your mind that you've done everything possible at the early stages.

If your GP is very concerned they can refer to a 'rapid referral clinic' or similar. Could you go back and ask him/her to re-prioritise.

A decent health visitor would have a good opinion and probably more experience than the GP. Also, if you have health insurance you could see a private paediatrician or physiotherapist.

I really hope there is nothing to worry about. The waiting game is unfortunately part of our lives. When you see the paediatrician in 12 weeks you may well be referred to other specialists or for tests, which can take even longer. When people are worried they do push things through, and as mum remember you know best. Take care. Xx