Hi there, I just wanted to chat to people who can help my little boy and myself on his journey.
Alex was born with what the doctors are calling hypoplastic palsy. He is a twin and both he and his brother came out naturally, no forceps ,no birthing difficulties, even the pregnancy was fine. On the day Alex was born I noticed something was quite right. I was a mother already before my twins so I knew what a newborn should be doing. Alex couldn't close his eye. For a newborn this was different! I mentioned it to the nurses and they put it down 'just being born' etc. 1 month down the line, I am telling health visitors about his eye and they said not to worry it is a lazy eye see the doctor when he is 6 months. At 3 months I noticed Alex could only smile one sided. with that and the non closing eye I really started to get concerned. Once again everyone is telling me he has a lazy eye, just developing slower, wait it out. At this point I am getting annoyed as I feel everyone is ignoring me and what my instincts are telling me.
To cut a long story short, by 6 months it is clear Alex has palsy. Though it took a kindly doctor to finally hear me, and my rant over being disregarded about my concerns for my son. Alex was referred to the hospital and it showed he had an under developed nerve (can't recall the name) that stopped his right side from moving, smiling, blinking etc. After a lot of apologies they finally sent Alex to a specialist at our local hospital. As well as an eye specialist. The specialist at our local hospital didn't inspire me with confidence so I asked to be referred to John Radcliffe Childrens Hospital to see their specialist. The doctor was pleasent enough but could not give us the answers we wanted. Why this happened, what will happen in the future etc so I got us referred to Great Ormand Street hospital so see their specialist. And I am glad I fought my way to one of the best childrens hospitals in the UK! The doctor has a special interest in facial palsy from birth, and has given us some answers we needed along with the reassurance that he can help. On our last trip there he has informed me they are (and have now) creating a clinic dedicated to this!!
Alex will eventually be having surgery to help him gain a full smile, using one of 2 methods. Nerve replacement or muscle replacement. This to be confirmed at a later date. He won't be having this surgery until he is around 7. The doctor has said that around that age other children pick up on differences and this can create bullying. So he wants to help before this.
Alex has speech therapy though his speech has improved thanks to his twin Ben who is a chatterbox.
Alex has started nursery so I have had to inform nursery teachers his condition and asked them to tell others who come into contact with him, as I noticed people do stare at him. Which I obviously hate!
I have started to explain to Alex and his brothers about the palsy though he would rather run off and play, so I can't decide when to really start talking to him about it.
I just wish I can understand what caused this, I know he has a weaker nerve but I would love to know why. Sadly this is something nobody can answer!
Anyhoo that's my Alex's story so far.
Thank you
Written by
SarahMawby
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Sorry to hear you've had a rough ride getting to the diagnosis stage. My Alex's story is on the facial palsy site under the brain tumours heading so I won't repeat it here. Alex has had his since birth too and is just 4 years old now so similar age to your little chap.
Kids multi task at this age, so talking a little and him playing is normal he will listen a bit to what your saying. It's tricky because you don't want to make him anxious but give enough of an understanding why he's got eye drops etc. Doing the everyone is different talk can be helpful too.
I completely understand about strangers, they are very annoying with their comments etc, my 7 year old tells them like it is which is funny and amazing too. Confidence and lots of social exposure to different settings to build self esteem will help provide a cushion against silly comments as the kids get older and have to deal with comments by themselves whilst maintaining their mental health. The 6-7 year olds who we see on play dates are more observant and inquisitive, we just tell them briefly about the palsies and talk about how all different...can they spot the differences in each other?
Surgery is not an option for us so resilience building and adjustment is our main focus.
Thank You so much for the advice! Sounds like your Alex has an amazing support system surrounding him!
I will try what you suggested with my Alex, and also with his brothers too. sitting down during playing and mentioning little bits here and there sounds like a great idea!
No worries Sarah, glad it helped. Feeling isolated with uncertainties is the worst part of being a parent with a little one with additional needs so sharing is a lovely way to overcome that and mutually beneficial.
Thank you for the vision advice. Annoyingly he doesn't have a vision problem that is likely to be helped by glasses, despite me being completely dependent on glasses....the problem lies in his brain not recognising the image properly because of long term distortion probably as a result of corneal drying, so glasses would magnify the image but not deal with the brain's interpretation. Gosh it's all a bit complicated. Just had our 6 weekly eye review today and decided to have a patch holiday because vision has slipped again and patching is not helping at the moment. Hopefully consultant appointment in 6 weeks time will shed a little more light on things.
Thanks Sarah for the suggestion. Alex isn't under the care of GOSH, we may at some point seek a referral but not until he's older, hospitals have dominated our lives since birth and we get tired of going over old ground and each anaesthetic retraumatises Alex, he's had 10 so far so we don't want to discuss more surgery unless it's for the tumour or to preserve the hearing in his good ear. We're focusing our energies in the medium term on eye care, speech development, eating and continuing his one to one funding ready for starting full time school in September! I'm shattered....looking forward to half term and a calmer week!!!!
I can totally understand your reasoning! Our Alex has been under anaesthetic more times than a boy his age should! And yes going over the same ground over and over got me extremely frustrated too! Half term is calm for you?!! I struggle with ideas for keeping 3 young lads occupied haha!!
Hi Sarah, phew survived the holidays. Hope you did too. The boys have had fun trips out and about and I had a couple of days to myself to decorate too so a good balance. We've had a funding decision through from our local authority today and there is enough in the pot to continue to fund Alex's one to one in September when he moves from nursery into reception which is fab news and a big relief. Got to meet new speech therapist soon, she's also got a specialism in hearing impairment which is great but our current one has been great because she's a swallow therapist and worked to support me with Alex since he was a few months old. How is your Alex with eating?
I have to say you sound like an amazing Mum! I haven't been able to find out about your Alex's condition on the site, aside from the bits of info you have given me!
My Alex appears to be ok swallowing though can have trouble controlling his lips and keeping things in though that has improved over time. His speech therapist says Alex has improved so much thanks to his twin who he is eager to keep up with though certain words/letters can be very difficult.
I am so please your Alex got his funding!! Such a relief for you!
Glad your half term went well!! Mine was hectic but fun!
Thank you for that lovely message. If you go on the FPUK site, click on about facial palsy, then click personal stories, then click on tumours and cancer. You should then see Alex's story if you want to read a bit more about our first few years.
Of course I don't mind! I wrote Alex's story on the fpuk site with the hope it might one day help someone else to feel a little less worried and alone if they have a baby or child with facial palsy. When Alex was born I was so anxious and there wasn't any information out there that didn't add further to my worries!
Alex' story on the website is as accurate as possible my portrayal of those early years but it remains positive with lovely baby pictures to give others the hope that they are not alone and that life is a journey that ventures in many directions some of which we maybe didn't sign up to but we can learn to adjust to never the less.
Happy reading.
Kerry
P'S it's the very bottom story on the page under teratoma tumours.
I found it. He is beautiful!!! I have to admit your story was just...I actually have no words! Plenty of similarities but also your darling Alex has more happening than my lad! I can totally understand the relief you must have felt when finally hearing what was going on with your lad! I felt the same! And like you I was getting so frustrated with people telling me to wait it out.
I am glad things are working out for you and your family what with the funding etc and you and Alex are in my prayers!!
Love chatting to you too! You are a very positive woman which is amazing and I also remain positive!!
Thanks Sarah, you've made me cry!!!!! Glad you found the story. It took hours to write but it was a really cathartic process so was worth it!
It's definitely good to talk...have you read Chris Esson's posts, he's provided some great pearls of wisdom in the past few weeks? It's lovely to keep the positive vibe going! Well done Sarah for surviving your bumpy ride.
Seeing Alex at sports day today was lovely I smiled for three hours enjoying the fun and his amazing spirit, he got stuck in quite literally into everything with hilarity and great pride! He got his own back on me and entered me into the mum's race. Yikes it's the only sports day in my life when I haven't come last and took home a prize! Good day all round!!!
I love that Alex appears to be a very cheeky chap!! Well done on your win!! We recently had nursery sports day too but Alex did not want to race but his brother Ben did! Luckily I didn't get roped in haha! Not that I can! I slipped a disc in my lower back 2 years back had an op then it slipped again due another op this year! So added stress in this house!!
I looked at some of the stories last night of others born with facial palsy and I won't lie it scares me that Alex will go through so much! For such an innocent it just seems unfair! I have faith that all will be as it should be and remain positive that my boy will be ok! he's such a lovely boy with a strong character as well as a twin who will no doubt stick up for him if the need arises though I feel Alex will do it for himself!
I know my worries are the same as others but I do feel bad that I know human nature can be cruel. And that others will see Alex and judge first before asking questions. I just wish he didn't have to go through that!
Hoping and praying that the op they have planned for him in the future will be successful and he will at least smile fully!
Take Care and I will continue my prayers for your Alex and your family!! (Hope you don't mind that? I am a Christian and always feel I should ask first haha)
I'm not easily offended by kindness and generosity so no worries. My family are incredibly lucky and I count my blessings everyday...we celebrate difference and have had lots of opportunities to meet lots of families with different life changing needs that will never be "cured" but need adjusting to and and a plan actioned to achieve each individual's potential. I am in awe everyday by the depth of human spirit and resilience, the more we dig deep the stronger we become and if we start to struggle and we can allow ourselves to be carried by the love and compassion of others then we can be helped to get back on our feet. Faith in strength whatever the source of that strength is to be celebrated.
I hope that you have lots of support with the boys to help you to rest and your operation goes well and gives you relief from the pain.
Just wanted to let you know that we now have a Facebook group for Parents and Carers of Children with facial palsy. Do look out for a message from me if you request to join as I am checking member requests for safeguarding reasons:
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