10 week old baby not responding to sounds/sight need a hand hold 😔

[Sheepsheeps]

Hi everyone,

This is my first baby so I really have no idea what to expect etc.
She is 10 weeks tomorrow and is absolutely perfect in every way other than she just stares into space, doesn't follow you with her eyes or respond to any sounds. Loud noises don't make her startle etc and I'm unsure of she even recognises my voice.
Had our 8 week check up and vaccinations last week and raised my concerns.to GP. I have since been referred to paediatrician consultant whom we saw today. Pretty useless appointment as she just weighed, measured her and shook a rattle/bell.next to her head either side!
She's now being referred to the ophthalmologist and audiologist. I'm so worried I feel sick to my stomach. I can't begin describe how upset I am that my little girl might be blind and deaf.
She also has really bad colic/silent reflux but that's a whole other worry.....
I need a hand hold please and if any of you have any similar stories with positive outcomes to share, please do xx

When is the ophthalmology appointment? If you are concerned you can visit a children's eye hospital A&E (like Moorfields in London) and be seen immediately. I say this because quick diagnosis action is important for some eye conditions babies can have. Wishing you all the best.

I have a little one in work who was like this and in his own little world but he just needed glasses for poor vision and as soon as he got his little goggle style lenses he made huge progress and became so sociable- he was very little at the time only about 4m

Hey 👋 my nephew was like this, would sort of stare through you when you spoke to him, the only thing that really caught his attention was windows, he would just stare at windows and there was concerns for deafness/blindness but he grew out of it slowly, he was diagnosed with autism at 3 years old, autistic babies/kids have episodes of blank staring as their senses become easily overwhelmed so so they concentrate on just one sense (generally causes black staring) the doctors/school at one point were concerned my son was having absent fits at one point xx

So very sorry to read your post and I cannot imagine how worried you must be. Remember they have to keep probing and digging because it’s their job, it doesn’t mean it’s going to be bad but they have to rule it out.

I had a difficult time when my son was a toddler. He didn’t walk until 18 months and at 2 years 7 months he could only say 12 single words. The health visitor kept holding up cards of a cat and a ball but he barely acknowledged anything. She actually said This is hopeless, all you can do is hope he’s good at football” I was so upset and convinced there was something seriously wrong as he used to make weird groaning noises for hours on end. Now 21 with a string of A Levels and at Uni.

A friend’s daughter has just given birth after being offered a termination due to so many worries during pregnancy that baby had problems. Only issue is slight impaired hearing in one ear.

Sending love and hugs x

Hi everyone

thought I'd give you a quick update.
Today we saw the opthalmology consultant who was generally quite vague tbh and struggled to get a good look in both eyes as my daughter was a bit uncooperative!
So his initial diagnosis is DVM (delayed visual maturation) and he wants to see how she progresses over the next 4-6mths. Sounds promising until I said she doesn't respond to noise.....
So there's a question of if her eyes are normal, why isn't the brain registering this?
Still waiting for the audiologist appointment

Hi @Sheepsheeps,

Well done for bashing on there. I'm keeping my fingers crossed here for you.

I wondered if you had read about how Hellen Keller learned from Anne Sullivan? I suppose if things are pottering on slowly then you could work on the assumption that your DC is deaf/blind and start doing whatever would be the right thing to give stimulation and learning?

Sorry, that sound terribly blunt, but I have chronic disability and so does my DS and we've become very thick-skinned about seeing the problems and just scrambling on anyway. Sometimes things can seem so bleak, but then we find a way round an obstacle and just keep bashing on, and that can be quite exciting.

That's great that they have found nothing organically wrong with your little one's eyes. It is very frustrating at the same time, I am guessing, though - no immediate answers.

We were told with DVM it is a case of watch and wait, as you have been told. The timeframe you have been given was plenty long enough for my DS's delayed vision to start kicking in. If you get beyond this, they can do specialised tests to ascertain whether there is something wrong in the cortex precluding sight being "understood" correctly by the brain - we are in the south and would have been sent to Southampton for these, not sure where else they can test this.

However, it seems like with delayed visual maturation sight can just kick in at any time. I hope you see some progress soon and can also get seen by audiology. Good luck.

How is their reflux and colic at the moment? My daughter didn't respond to the world until they were adequately treated at around 17-18 weeks. She had been on gaviscon since 6 weeks and omperazole since 8 weeks but not a doses that made any difference. At 17 weeks I went dairy and soya free and she went to the highest dose of omperazole and in a week she was turning to sounds and smiling. We had been raising it as an issue since 8 weeks but no one made the connection to her reflux until she made a dramatic improvement. She scored in the concerning category across all development categories at 17 weeks by 21 weeks she has normal scores.

My DS had terrible problems until I took him off wheat and dairy too. It was awful and then as soon as I changed his diet everything got better.

@TwentyFiveAndCounting @Superscientist
Her reflux is definitely getting better since I stopped all dairy. It's by no means solved but she's a lot happier. She's still very windy though and that can upset her until she passes it.
I've not got her on any treatment for it as I was advised to do the exclusion diet first which can take at least 4 weeks apparently.
I might try cutting out wheat too but what the hells left to eat?? Xx

@Airysairy
I'm glad your son effectively grew out of it if that's what you mean?
It's just such a loose diagnosis and to be told just wait amd see what the next 4-6mths brings just isn't good enough in my opinion.
I didn't like the consultant either. He lacked patience and empathy. He started to get clearly fed up with my little girl.who understandably didn't want to have a strange man shine a bright light in her eyes after having the dilation drops in that sting like a bee!!!
Did you just slowly notive an improvement over time? Did you have to go back for follow up tests or did they just say all.was.good once he could see? Xx

I wouldn't be very happy with that either. If the consultant confirmed that a normal red reflex was present, then the next step would usually be a scan of the eye to check that all the wiring bits behind the eye to the brain look ok (sorry for my terribly non-medical description there). Most big eye hospitals can do this on site.

This is what is left without wheat and dairy. Obv this would be for you to eat rather than a 10 week old baby, but if you are bf then she gets all that you eat.

ReadyBrek - can be used as a flour to make biscuits.
McCain naked oven chips
Bird's eye waffles.
rice of all kinds with all sorts of things in it.
potatoes of all kinds
any kind of gluten free bread
any kind of gluten free flour.,

The Freee flour is good and the recipies on the flour bag work.

Is that any help as a start?

Soya would be the next thing to try and keeping a food diary. Half of babies that all allergic to dairy are allergic to soya to. Eggs would be the next most common allergen but really it can be anything!

You also don't have to wait for the exclusion to try reflux treatment. It paediatrician did both together and I'm glad he did as whilst my daughters reflux was made worse by her food allergies she has reflux in addition to the food allergies and it was only by treating both that we got everything sorted. It was too difficult to find food allergies whilst her reflux was playing up and her reflux wasn't manageable until we had identified her allergies and excluded her allergens.

If you want a gluten free sandwich on the go, then you can go into the supermarkets and a lot of them sell sandwich fillings in little tubs. You can then buy that and the bread and make up a sandwich from the parts. Waitrose has them all in the meal deal section. Most supermarkets now have one gluten free sandwich in the meal deal section, or possibly two, but if there are two then one is always not dairy free.

He checked the red light response which was fine, looked at retinas and optic nerves and they all looked OK.
I thought it was strange that he said the next step was great Ormond street?? Bit of a leap from a consultation!!!!

I forgot to say, but if you give up wheat, it's really important to think about where you are getting supplemental vitamins and iron from. In this country it's a legal requirement that wheat flour is fortified with vitamins and iron, so if you cut out wheat then you also cut out all that good stuff. With my DC we started using readybrek flour as it's wheat-free but fortified, so it fills in all the good vitamins and minerals. You'd know if you are short because you'd catch every bug going and they'd last a while and be really annoying. My DC doesn't catch things on a wheat-free diet as long as he has readybrek.

I think they might be going straight to Great Ormond Street because they need to get results quickly so that her eye development isn't interrupted. Vision development happens very early in babyhood - things like the eyes learning to work together as a pair. If the eyes need a bit of help to get working, then they want to get that help asap so that the important vision development stages can take place while the time is right.

If steps are missed then they can be done later with exercises, but ideally the medics will want to get things moving quickly.

It just surprises me then that the consultant I saw yesterday was willing to wait until my baby is nearly 9mths old before he wants to see her again

GOSH have a great kids team for eyes, development & everything else, so you would be in excellent hands there.
Are you due to see someone before you see the consultant again at 9 months? Agree that feels far too long to wait.

@Pigeon66
Nope! Not due to see anyone else in that time frame, just been told wait and see (pardon the pun....) what happens.
I asked what should we do if we feel there wasn't any progress etc after a month and he just shrugged and said wait for your next appointment!!!

I really don't think you should wait that long. Would you consider seeing someone privately?

You can find paediatric opthalmologists on the bupa consultant finder and just make an appointment in return for money.

www.finder.bupa.co.uk/Consultant/view/U3dWN0l6NkV3bE5GdXJDRXB4alEyUT09/?ql=&qla=&qlo=&fhospitalNetworkId=

I think it's possible that GOSH also take private referrals. I just found this page:

https://www.gosh.ae/conditions/ophthalmology