Fed Up, Upset and Frustrated!!!

[Eileen1359]

Hi Liz
Yes we see the Consultant all the time which is good because he seems to remember us each time we go. The annoying part about waiting long times is that I have to take time off work to go with him and with it only being the beginning of the year if it carries on like this will end up with no leave left!

Phillip's eye today has lost a bit of the redness but he is finding it hard to kep open. Can only presume this is because of the light sensitivity and the ulcer. I just wish that I could turn the clock back sometimes and for him not to have to go through this.

I know there are a lot of other sufferers of KC who are an awful lot worse off but when it is happening to someone close to you it is very hard to deal with. I have had a few tears with the pain he has been in and as a mum you would rather go through the pain yourself than let you children suffer.

So long as the CXL settles down and he regains the sight he previously had I will be grateful for at least that.

Regards
Eileen

[mikkey3023]

im sorry to hear about your son's ulcer and pain Eileen , i had hydrops and the same when younger , its very painful and the light sensitivity is bad too , all in all it is not good and very distressing for you all , it will get better i hope it settles down quick with maybe steroid drops and time , everybody on here is very helpful and knowledgable , it is refreshing and more enlightining than your average nhs clinic which in some cases is overcrowded and busy and a bit like cannon fodder in and out , i hope your son gets the correct treatment and things settle down soon . Best wishes.
Mikkey :

[Eileen1359]

Thanks Mikkey. We were back on Friday yet again to Consultant. Said it is starting to show signs that may be healing but has left bandaged contact lens in and to continue with antibiotic ointment and steriod eye drops. Wants to see him again on Wednesday to take the lens out and flush eye. Hopefully by this time he may be able to actually see something rather than the complete haze that he has now. Phillip is so fed up with not feeling right that it is knocking his confidence that wasn't that great at the best of times.

Regards
Eileen

[mikkey3023]

Hi Eileen , glad things are going in the right direction for your son Phillip , my confidence and lifestyle were greatly affected when in my teens , exactly know what you and your son are going through , i have a baby daughter and hope she doesnt end up inheriting KC ? one thing that ive learned is strength of character through the good and bad of KC , Eyesight is so important especially so when your young and entering the big world , your son is lucky he has you as it is probably the worst time when your in your teens and you have KC , all i can say is try and keep positive both you and your son,life is a test at times , going through the bad times makes you stronger in the future . I hope in the coming days and weeks things improve even more for your son , Best of luck to you

Mikkey

[Eileen1359]

Thank Mikkey your kind words and thoughts have cheered us both up.
Regards
Eileen

[mikkey3023]

No worries Eileen

Mikkey