10 month old with congenital facial palsy

[Mummytojoshy]

Hi,

I’ve just joined this group and hope to find people that are or have been in a similar situation.

I have a beautiful 10 month old boy called Joshua who has congenital facial palsy.

The cause is still a mystery. I had a normal delivery and no health concerns. Joshua is now under great ormond street as the palsy has not resolved. He has had a nerve test and MRI which have both come back completely normal. Our consultant has suggested it may be that when the nerves have repaired they have reconnected wrongly.

Unfortunately due to covid, Joshua has not been able to be seen face to face with the consultant and has only been assessed via zoom which isn’t ideal. We have an appt in March next year. The consultant has suggested referring Joshua to plastics.

Fortunately, palsy has not affected his eating and drinking and mostly the concern since birth has been eye care as he cannot close the affected eye.

Just wondering if there is anyone who has had a similar situation? I am thankful that the tests so far have been normal but feel so anxious as there have been no definitive answers to what has caused it and what the treatment options could be.

Thank you for your time, Lorraine.

[QueenC3060]

Hi Lorraine,

First of all Congratulations on the birth of Joshua 💝🤱🍼🎈 and glad to hear that you are both well despite the palsy.

I'm not sure if we have any support groups or pages in the UK for Congenital Facial Palsy but I would have thought there should be some so you and your hubby can chat with other parents who are going through the same as you are.

Only you know Joshua better than anyone and if you are concerned about anything with him then keep ringing the Drs and Specialists hunny, it doesn't matter how many times as long as you have peace of mind.

When my son was young he kept getting severe ear and throat infections, it got to the stage that he wouldn't eat, lost alot of weight and was constantly in pain, he was also beginning to stop drinking by the time they organised for him to have his tonsils removed. The day of his operation he was the first one into theatre, all the other children in for operations went down after him and were bought back onto the ward except him, so by this time I'm getting extremely stressed out and worried when a nurse came and asks to speak to me, so I immediately thought the worst, but she said she wanted to apologise to me as she had been one of the many nurses and drs that had told me I was a neurotic mother and was making out things were worse than they were with him until they took him into theatre and ended up calling the top surgeon as when they looked into his throat he had massive ulcers in his throat and none of the drs in theatre were capable of taking them out! She said that I had been right all along about how poorly he was and that they were all sorry for not believing me and being vile to me. When he was finally bought back to the ward all the other children had gone home, he didn't wake up until 2am the following morning.

All I can do is wish you all the best. I hope that Joshua is well. Like I say if you are worried or unsure keep asking them as you know him better than they do, and if you aren't satisfied with something ask for a second opinion or push them to see him sooner.

Sending you lots of love and best wishes. Take care of yourselves xxxx

[QueenC3060 in reply to QueenC3060]

Also contact Karen-FPUK on here as she may be able to point you in the right direction regarding any support etc xxx