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#24353 - 05/05/09 09:53 PM Second Child?
izzy Offline
Member

Registered: 03/20/09
Posts: 5
Loc: Ireland
Did anyone out there consider not having a second child? My son is nearly 8 months old and has mild icthyosis (suspected CIE -still waiting on DNA results) He also has eczema which makes him scratch his poor skin till it bleeds. I love him so much but the constant gelling and creaming and bathing etc are such hard work and I sometimes get so tired.

I would love to have a brother or sister for him but worry that if we have another child that he/she would have a more severe version and that I wouldn't be able to cope. I know I probably sound really selfish but I would love to hear your thoughts/ experiences.

Thanks in advance xx

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#24361 - 05/06/09 01:15 PM Re: Second Child? [Re: izzy]
yr Offline
Member

Registered: 07/16/08
Posts: 107
Loc: Ireland
The decision was made for us! I found out I was pregnant the week after Gary's first birthday and went to pieces. I could'nt imagine how I would cope with another baby like Gary and he was cross all the time. But Jack was a totally different baby. He was so placid and calm. And it was much easier the second time round.
We knew what was in store and fore warned is definitely fore armed. We were already in a routine and it was so easy to adapt it. I would'nt have it any other way now and it also meant that because both of them have it, they were any different from other children as they both had the same routine!

Yvonne.

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#24414 - 05/12/09 05:44 AM Re: Second Child? [Re: yr]
Cindie Offline
Member

Registered: 10/01/08
Posts: 97
Loc: Riverside County, Ca.
Izzy~ I replied to your post on the EHK board I think. I have EHK or BCIE (like CIE but it blisters)... my son TJ was born with it and is 9 months old.

I'm currently almost 2 months pregnant with #2. We are very happy about it... What creams and gells do you use on him??? Try Vaseline after a bath OR even to make it easier. Get baby oil jel from walmart (generic is cheap) and generic Petroleum Jelly use a little of the jel first and then rub in the vaseline well... That's what works for me! I only have to do it 1x MAYBE 2x a day. If generic makes him break out at all (you'll know if he gets a red blistery rash) then switch to name brand.

Get some Cortisone ointment for the itching of the excema if you haven't already. Just ask his Dermatologist. If you have any questions and live in the U/S where you can call me out here in Socal. Private message me and I'll send you my phone number. We have 4 generations in our family with BCIE or EHK. We have found some pretty good ways to keep our skin looking very clear. most ppl think I have a sunburn, and sometimes they can't tell at all until they look close. (If I'm nice and greased up.) lol,

Cindie
_________________________
Wife to Carlos and Mommie to TJ, preemie born 1 mo early 8/14/08 with EHK, Down Syndrome, and a BEAUTIFUL personality!

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#24445 - 05/15/09 09:42 PM Re: Second Child? [Re: Cindie]
izzy Offline
Member

Registered: 03/20/09
Posts: 5
Loc: Ireland
Hi Cindie,

Yep I posted here first before I saw the parents group so then posted there too. It's my first time posting so not very familiar with the site, or posting threads in general for that matter!

Thanks for your reply and congrats on your news. How exciting!

I currently use paraffin gel on him approx every 3 hours. He gets emulsifing oinment after his bath. For the ezcema he has hydrocortysol cream for face and emuvate every 4th day. He has betnovate for body (also steroid cream).

Really appreciate your offer to call. I live in Ireland though! There doesn't seem to be too many people here with it. I sometimes feel that the specialists don't know a huge amount about it or maybe it's just that they don't want to baffle me with too much info LOL!

How do you PM someone?


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#24451 - 05/17/09 07:44 PM Re: Second Child? [Re: izzy]
BritMum Offline
Member

Registered: 07/25/08
Posts: 226
Loc: UK
Hi Izzy,

Where abouts in Ireland are you? (PM me if u'd rather not say on the boards - Just click on screen name and find the option).

We're in England so not a million miles away! We have a 2 yr old little girl with probable nbCIE. I say probable as we chose not to put her through a skin biopsy as the results wouldn't alter the treatment at all!

J x

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#24452 - 05/17/09 09:10 PM Re: Second Child? [Re: BritMum]
libby Offline
Member

Registered: 02/25/05
Posts: 356
Loc: USA
Hi, my husband and I didn't know what our daughter had until she was 5. By that time, we had already had 2 more girls, neither of which are affected. Claire is now 13 and has nb-CIE.

Good luck with your decision.
Olivia

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