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#11201 - 03/06/06 06:49 PM fed up
victoria Offline

Registered: 03/19/05
Posts: 193
Loc: Berkshire, England
Ok well here goes am gonna have a gripe - mainly cos I feel with parents being here of ichthyosis children I may be somewhat understood........
My 17 month has x-linked and yes its nice to be asked how he is BUT WHY WHY WHY everytime I have a doctors appt for him or the health visitor visits do they ask HOW his skin is and not how Kian is in general - even when they ask how i am , it isnt HOW I AM it is HOW AM I COPING......My health visitor when I mentioned this to her presumed I just did not want to talk about it and offered me counselling..i mean whats that all about :-/, I am more than able to deal with the fact Kian has ichthyosis and accept it and move on in life but at the same time I just want to be treated like any normal mum and want kian treated like any normal child so I cant see why they are finding it so hard to just ask how we are in general.
Am i supposed to have the patience of a saint because my son keeps me up most nights screaming through his skin ? Am I not supposed to ask the doctors what creams are available (my gp is rubbish - he dont even know wot lotions to recommend after 17 mths let alone how to spell eucerin !!).
I have had access to Kians medical notes but nothing from the hospital and that has become another major issue with me. I had to pay 10 for the notes and was disgusted to find kian had been diagnosed two months before i knew anything about it. I am now going to have to hassle the hospital for a copy of them notes and probably pay again. I am feeling so let down by the doctor and hospital.
We had an appointment today because his skin is at the moment all cracked and sore and i wanted to check he didnt have an infection and he has a sore on the back of his head which isnt healing to well - and all i got was brushed off.
I also asked about the chicken pox vaccine beng available here and got told that he (being the gp) didnt know if it was available here and i am to ask the derm about it at our next appointment.
Our next appointment is 1st september.....The doctor even had the nerve afterwards to remark that he did NOT want kian to get chicken pox because he was unsure what he could have to soothe it or how it would affect him grrrrrrrrr.
I just feel now like everything is back on top of me and that I am supposed to grin and bear it all and expect all this and now i am so frustrated.
Severe lack of sleep plays a cause and I dont mind so much because we have kind of become accustomed to it as kian has never been a big sleeper especially at night but it is worse when people dont seem to understand on some days i walk around like a zombie just wishing for one nights decent sleep. I know it isnt kians fault he didnt ask for ichthyosis but at the end of the day I am human.......I am not a super mom and i never will be so why do these people who are supposed to be professionals in their work place expect me to be [img][/img]

I am the only mum to feel like this at some time or another or am I normal.............

[This message has been edited by victoria (edited March 06, 2006).]

#11202 - 03/06/06 10:01 PM Re: fed up
CShell Offline

Registered: 11/10/05
Posts: 1193
Loc: Fort Meade, MD
Oh man, I can totally relate. Her pediatrician is great, she's always telling me what a great job I'm doing, and is always encouraging me to try whatever I feel is necessary to avoid a G-tube. Her dermatologist/GI doctor/nutritionist are another story, I'm not too fond of any of them (they're all out of the same hospital, at Stanford University). Most of them don't know a single thing about Netherton's syndrome, and when I'm at the appointments, I'll bring up things that they had no clue about. And it just drives me up the wall.

I HATE when people ask me what's wrong with Julia's skin, and then have this horribly sorry face on when I say, "Oh, she has a genetic disorder, yada yada". She's no different than anyone else, just needs a bit more skincare!

My mother-in-law is the worst of all, she's always trying to concoct these new things that'll make Julia's skin get better like magic, and it just really annoys me, b/c one day Julia will be old enough to understand what's going on. I want people to be focused on JULIA and not her condition. I don't want her identity to be "a kid with Netherton's syndrome".

I'd type more, but Jules is crying, but just know that I'm in the same boat you are, and I'm sure at one time or another, everyone else on here as been too. Take it easy. ((hugs))
Mom to Julia


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