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

My DS had terrible health problems in infancy, and I had to figure it all out myself. The medics just had no idea what to do. I'm now having to home school him to resolve the trauma from all the interventions they tried that didn't work. Raising kids is really fiddly and waiting for the NHS is really not a good idea.

Any chance you could get a private assessment?

I’d get her privately assessed. Hope you’re ok x

I don't want to be overly-dramatic, but my child would be blind if I had taken the advice I was given by a consultant to wait 4 months for an appointment. He already suffers permanent effects from the delay to diagnose, but not as bad as they would be if I hadn't taken matters into my own hands. Hopefully this is not the case for you, but I feel strongly that you can't be too careful to this crucial developmental stage.

Could afford to go private? My son had very delayed speech at 5 years old. Nhs said he was 6 months delayed. Private found out it was 3 years aged six. Nhs didn't test him in the,area he has a language disorder. They just didn't enough in depth testing as they was interested in finding a problem

@DyslexicPoster @Mischance @Pigeon66 @VaccineSticker
Yes I'm going to ask for a private referral and my parents said they would help pay for it.
@Pigeon66 that's awful?! Charlton we're the symptoms and what was the misdiagnosis in the end? Did you go private too? I'm thinking of just looking at the BUPA list of ophthalmologists and going from there 🤷‍♀️

@TwentyFiveAndCounting
I think I'm just going to look at the BUPA list of ophthalmologists and go from there. I mean, where do you start 🤷‍♀️

His symptoms were not fixing or following or reacting to light / movement etc. The diagnosis was congenital cataracts that were missed repeatedly until we went to the A&E at the children's eye hospital. The delayed diagnosis caused damage to his vision permanently, but much less than if we had waited as advised. It's rare, but it has made me very concerned when I hear about people being told to just wait.

You would need a paediatric ophthalmologist ideally. If you are near London I can recommend some, but if the eyes are your main concern, you can visit an eye hospital A&E for free to start with.

I'm about 2hrs away from central London but doable via train so please send me your recommendations.
Apparently her eyes look fine structurally but surely cataracts would be noticeable?? Or are they different/really subtle in babies?
I'm so sorry you and your baby had to go through that. How awful that it could have caused total blindness through such negligence!
I've just been made to feel like a neurotic new mother....

Discovered my DD was completely deaf at 2 years old. O had no clue as she could lip read perfectly. NHS was useless and kept fobbing me off as a neurotic mother. Private ENT consultant had her in for an operation within a week. She had huge tonsils and adenoids which had c contributed to glue ear. Interestingly, I was told that this could have caused the severe reflux and feeding issues she had! All whipped out and grommets put in. Perfect hearing after that. Had to have a lot of speech therapy due to not speaking until she was almost 3! Now 12 years old, gifted academically and musically on a scholarship to top school. Keep pushing for answers and don’t be fobbed off!

Mr Kuo is a fantastic paediatric ENT private consultant. Based in the Midlands. He was the only one who knew what was wrong with my daughter- pretty much knew instantly and was one of the nicest, kindest doctors I have ever met.

Good luck op.

Random note of advice, when you get to London get in a proper London black cab to GOSH. They won’t ever charge a parent taking a child there, so I understand.

This was what happened with my DS too. He was deaf mute at 14 months when the surgery was done and by 18 months he could read all his letters and started speaking words.

We're still picking up the pieces ten years later from the delay he suffered though. Still paying privately for everything.

Random note of advice, when you get to London get in a proper London black cab to GOSH. They won’t ever charge a parent taking a child there, so I understand.

Just to say the above isn't true so don't rely on it. I have taken my child in a black cab to GOSH many times and been charged every single time. Rightly so; they need to make a living.

One thing that might work is just to book a zoom appt with the first bupa paediatric opthamology consultant that you can find. (S)he should be able to tell you where to go next for the best, or refer you on.

If you write to the secretaries listed on their webpages on the bupa consultant finder, then they will be able to tell you how long their waiting lists are.

For the reflux problem it might be worth booking an appt with Venita Patel. She was an NHS paediatrician for 20+ years but now does private consulations on nutrition and food intolerance problems. She might help you unravel the reflux, which might possibly sort everything else. She is expensive.

http://www.healthvianutrition.co.uk/

Just to say the above isn't true so don't rely on it. I have taken my child in a black cab to GOSH many times and been charged every single time. Rightly so; they need to make a living.

Same, we got a black cab from GOSH the day after my DS had a heart procedure and was charged.

Anyway good luck OP hope you manage to find a private specialist and get it all sorted 🤞

It sounds like your dd had a good thorough exam with an ophthalmologist. Some are not renowned for their people skills but that's not to say it wasn't a good exam.

Cataracts would definitely not be missed especially if eye drops were used!

If her eyes are healthy but she isn't fixing and following then the most likely diagnosis is DVM. Are her eyes steady or do they move slowly back and forth or wobble and shake ? If steady DVM is most likely.

You could go to a private eye specialist but I suspect they will just tell you exactly the same thing.

More useful at this stage might be a private paediatrician and possibly an MRI if there are worries about both sight and hearing.