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#13398 - 02/02/07 04:53 AM Re: Roll Call!!
Francesca Offline

Registered: 01/16/06
Posts: 94
Loc: Brisbane, Australia
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!

#13399 - 02/02/07 03:34 PM Re: Roll Call!!
chopkins Offline

Registered: 09/23/03
Posts: 18
Loc: Flemington, NJ US
my name - Carrie Hopkins

daughters - Heather (LI) and Ashley (unaffected) - and 6 months pregnant with another little girl

I have been reading the board for the past few years, and have found great support and ideas to help me care for my daughter - I hope and pray my new baby will be unaffected, but non the less will love this child no matter what. I am so appalled and shocked by the posting of one individual - how rude and hurtful one can be!

#13400 - 04/18/07 01:25 AM Re: Roll Call!!
melissa Offline

Registered: 07/09/03
Posts: 14
Loc: janesville WI USA
My name is Melissa I have 2 daughters 9 and 7 my seven year old has EHK and so do I.
Who ever ShaneTed is you are obviousley looking for attention. I guess you are not getting enough at home. You are so rude I couldnt beleive all the bad posts you wrote. How dare you say the things you say!

[This message has been edited by melissa (edited April 17, 2007).]

#13401 - 04/20/07 12:04 PM Re: Roll Call!!
mumofcalista Offline

Registered: 04/12/06
Posts: 38
Loc: Gold Coast, Queensland, Austra...
Hi all - havent been on in ages.


Kids:Joanne 10, Jack 8, Nicola 5 and Calista 18mths

Ich: Calista has EHK (K10, hasnt affected palms and soles as yet)

Coping? Well, except during the terrible injuries that EHK toddlers achieve.

Tips to avoid: Visiting a dermatologist LOL!

Successful tips: 1)Soap - believe it or not, after visiting with a family who are into their 3rd generation of EHK, I took their advice and soaped up the bath until it was cloudy and soaked her in it. The build up which I had such trouble controlling (looked like mud stuck to her) rubbed off so easily. I now do this twice a week, followed by plastering on thick moisturiser head to toe, sitting her in the nude on a plastic sheet for about 2 episodes of hi-5 (is this show in the USA yet?) and allowing it to soak completely in. Her skin has never felt softer!

2) Scalp scale - Calista has a lot of hair and like most, I was pulling MY hair out trying to get scale out of hers. One day after her bath I decided to smear the thick moisture cream through her hair as well. I let it dry and the next day combed (again during hi-5!). The scales just slipped out and her hair looks beautiful and soft!

I was so delighted with these simple measures that I wanted to get on and post, in the hope that someone else may also have some joy.


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