Really worried about my daughter and looking for advice

khuge11

I am really worried about my 9 month old daughter. She is a twin and had some difficulties at birth and required resuscitation when born and also spent a week in NICU and was have desaturation episodes. She has a twin sister who is now crawling and a very active baby.

I have always noticed that she kicks her legs less than her sister and also that she is overall just less active however in the last couple of weeks I have noticed that she uses her right leg a lot more than her left. When she is lying on her stomach she kicks her right leg all the time however never does this with her left, like ever. She is trying to get into all fours but it’s like her left leg is stopping her as she can’t pull it up.

She is 9 months and can’t sit unassisted, although she can sit she can’t be left as still very wobbly. She uses her right side of body a lot more than left and will only pivot to the right side.

When eating she is always chocking like she can’t swallow her food, she constantly clicks her tongue. She also still gets startled very easily and will only look at you from far away will not look at you from up close just turns her head away. She has also started arching her back and throwing herself back a lot.

I am really worried that she has CP, I have spoken to doctor and health visitors about my concerns and they have advised they don’t have any concerns and the HV said that babies can have a preferred side however I really don’t think this is correct. I want to try and get her help as soon as I can however the HV or GP will not refer to paediatrician. My friends and family think there is nothing wrong and now think I have post natal anxiety so I have no one to speak to about it.

I am really concerned and I want to try and get my daughter help as soon as possible but the HV is saying to just wait to next check and that a PT won’t work with her this young however everything I I have seen online says early intervention is the best.

I have tried looking for private doctors in the UK however due to her age I can’t find any who specialise that could help me.

Does anyone have any advice on how I can try and get my daughter help or any recommendations for doctors in Scotland who I can self refer to.

thanks

KylieGirl

I am no expert, but I do know of a gentleman that my husband used to care for who had cerebral palsy and was a twin. His twin was fine but he was diagnosed with CP and as a result, this was seen as a hospital error and after many years he was given a payout of £5 million. I would definitely take this further. At the time (he told us this when he was in his 30s and it took many years to go through the court system) that he was told, if you were a twin and your twin was absolutely fine but you had a disability, it was automatically a hospital error. I’m not an expert and things may have changed since then(this was in the mid 2000s that he told us). I would seek legal advice with a medical negligence specialist, but you also need to push for a diagnosis. If you have the Patient Advice and Liaison Service (PALS) in Scotland, I would start there first when looking for a specialist to get a proper diagnosis.

Your local PALS is linked to your local hospital.

Wishing you all the best, but I’m so very sorry that you and your child are facing such a difficult future.

Zoë

KylieGirl

PS, it will be really difficult to get a diagnosis from a GP because they do not want an expensive court battle. My sister was told when her little girl was born that they could see PVL damage on the scan and she most likely had CP. They were called back a few months later and the same doctor who told her that, was in the room, but retracted what he said. She found it hard to believe as he had 40 years experience in the business. He later retired but she still believes to this day that he was forced to do that, and her daughter has CP (I also have CP so we have grown up together and we both recognise the way she walks, her gait and her posture suggest that it is the case, but they are refusing to redo the brain scan despite repeated requests from my sister and her husband. They are just trying to avoid a payout. Xx

SaraC_Scope

Hi @khuge11

Welcome to the community. It sounds like you are coping with a lot, whilst also being a parent to twins.

I'm unable to offer any medical advice but would recommend asking to see a GP again (maybe a second opinion) and keep airing your concerns with professionals. Could you keep notes of your observations and maybe take video footage to share with them? It's absolutely your right to keep advocating for your daughter and make sure nothing is missed. As you said, early intervention is crucial.

Did your daughter have continued specialist support after leaving NICU? It might be worth contacting them.

I've included the link to Cerebral Palsy Scotland who you might want to contact for information.

Sara