Your name: Francesca
Your childs name: Lucia Belle
What type of ich. (if any): Netherton Syndrome
Any updates on them you want to share?: Our current concern is feeding or lack of...Lucia has been fed thru' a button since July06(prior to that was NG tube because of all the hospitalisation). We have persevered with oral feeds before each button feed and by last Dec she was eating a few spoonfuls of cereal or puree, sucking on fruit and veg, chewing on rusks and finally sucking a little from a beaker - it was poetry in motion!!! Then, we changed formula (on dietitian's advice)in mid Dec and sadly it has all gone pear-shaped - no interest in eating anymore and a consistent 'bring up' of all feeds along with a large amount of mucous....very distressing for all concerned and this has been going on for 7weeks now. She is due to have an endoscopy on Thurs, (all Xrays and contrast studies came back clear)- strangley she has been putting on weight(altho' this week she feels a little more slender than before)and thus with weight gain and an infection-free status she is scoring high with the ped....I have decided to video a couple of the feeds to show the doctors her distress....don't know whether it is related to NS or is a separate issue?
Lucia, however, recovers quickly from the choking and transforms back into her usual happy, cheery self! No crawling, walking or talking yet, but very good sitting, pointing, smiling,standing and listening(that won't last long!) She is particularly strong when pushing me away during bathtime, and has a mean right hook!
How's mom (or dad!) doing?:
Mostly good, but have some frustating moments....
What's one tip on skincare you would recommend that people DIDN'T try that you have?
lol What I have learnt is that what may work for one child with the same condition, may not work for Lucia.Don't despair, have the courage to experiment...
What's one tip you'd definately recommend for skincare?
Never skip it...and try and enjoy it? I know it sounds weird, but I got stuck on the negativity of having to remove the skin so meticulously, every day, especially on Lucia's face - it seemed so unnatural...but since I have a 'rhythm' now, both she and I really enjoy the massage aspect of rubbing the ointments in - she still protests on some areas(ie. scalp!!!) but in the main it has become a special time between us, and the bonding has been making up for all those months that I couldn't cuddle her properly in hospital!
Also, never realised how versatile Papaw Ointment could be!
I really appreciate all the advice and tips that that are posted on here - these handy hints have often saved the day!