anyone's toddler got ptosis...question

[bumbly]

At hospital they say not ptosis but simply swelling of eyelid

now why is.my toddler eyelid drooping and flickering when thinking/focusing far away??

Why say swelling/unsure and leave it lile that without follow up....

Eye visibly has different eyelid but is intermittent..swells/flickers/droops then goes ok

anyone have similar...help

[chipmonkey]

How long has it been like that, bumbly? Does he have an eye infection?

[JT76]

Hi Bumbly
Remember me? I contacted you through netmums about 18 months ago as my daughter has a similar eyelid condition to your little one. Hope you remember me.

I see you still have the same problem, as do we. It happens less frequently now but she has just had an episode where both eyelids have been swollen/had extra crease for about a week, her right one is usually okay.

I told you my daughter had been diagnosed with blepharochalisis syndrome which causes swelling in the eyelid, but apart from ibuprofen no medication is available. They may operate in the future.

Did you ask about this at your hospital appointment ? Have you had any more possible diagnosis ?

Hope you are well, would be good to get an update.

Jo x

[JT76]

i mean mumsnet not netmums !

[bumbly]

yes do remember and texted you various times!! you changed number??

hugs!!!!!

[JT76]

Hi, really good to hear from you. Are you well ?
Still the same number I think if you want to try me.
Does your little one have problem alot or just now and then. Since I wrote my last message my daughter has had a really bad episode, was tilting her head back to watch the TV as eyelids so swollen. We are waiting for hospital appointment as I refuse for her to be affected like this. She talks well for her age and is saying there is something wrong with her eyes and they are sore sometimes, there has to be something they can do to help.

Are they doing anything to help your little one ?

I feel so helpless but when shes not having an episode her eyes are absolutley fine. How about your son.

Very best wishes , look forward to hearing from you.

Jo