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#28485 - 06/15/12 02:15 PM Re: Parents of children with harlequin ichthyosis? [Re: joniba]
joniba Offline
Member

Registered: 04/01/12
Posts: 5
Thanks Jennifer. This is Omri's mom Anja. I checked out the blog. Very precious little girl. I hope to get in touch with her mom. Omri is the only child in Israel with HI and the doctors here have no to little experience with the condition and a lot of times we feel pretty alone on the moon... We have so many questions!

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#28490 - 06/24/12 04:13 AM Re: Parents of children with harlequin ichthyosis? [Re: joniba]
janesmomma22 Offline
Member

Registered: 11/24/08
Posts: 10
I hope u guys get some peace,my daughter Jane ann is 3and a half.Shes doing so well.She had some issues with feedong when she was a newbie,the only baby formula I found that she kept down and that didnt cause pain was called similac sensitive,they wanted her to drink high calorie but it was rough on her stomach,and she had ectropion like I said before but her eye doc stitched them down to stretch the eyelids it worked very well,Do they have a ointment called aquaphor in Israel? It worked very well on my daughter,i.bathed jane once a day when she was littler and made sure she was very greasy at all times,her skin did get very thin at times,so I.bathed less and mostrized more,at those times.Its hard tobfindba balance of what works the best but make sure you keep him greased up and

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#28496 - 06/28/12 06:46 PM Re: Parents of children with harlequin ichthyosis? [Re: joniba]
Laurensmom Offline
Member

Registered: 12/29/04
Posts: 212
Loc: north billerica, massachusetts...
Hi Joni,

So sorry it has been so long since I was on the board. I do hope that Omri is feeling better and back home. Feeding was a real issue for us when Lauren was a baby. We found the advice we received from both gastrointerology (Lauren had reflux) and our nutritionist invaluable. As an infant we would mix Lauren's formula to 30cal/oz just to help maintain and gradually increase her weight. While she is still small for her age, she really is a great eater and is healthy of the most part. She also has the ectropian and have been advised against surgery. Instead we use Tazorac gel under her lower eyelid to help loosen the taughtness of the skin around her eyes. Lauren does not fully close her eyes at night so we liberally use a eye ointment at night and artificial tears during the day. You can also find me and other very supportive moms on Facebook at Ichthyosis Mommy Spot.

All the best,
Shannon

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#28745 - 12/31/12 04:32 PM Re: Parents of children with harlequin ichthyosis? [Re: Hearsay]
Im Enis Offline
New member

Registered: 12/31/12
Posts: 2
Hello, i am also in Israel. I had 2 babies with HI , (they passed away in the Nicu.. I have a very healthy boy- 2yrs old.. and a HI 4 month old boy... any advice?? skin graft surgery to create eyelids?? how can i do that?

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#28746 - 12/31/12 04:35 PM Re: Parents of children with harlequin ichthyosis? [Re: joniba]
Im Enis Offline
New member

Registered: 12/31/12
Posts: 2
i also live in Israel and have a HI 4 month old baby.. can we talk? i also feel alone... where r u from?

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#28750 - 01/02/13 11:55 PM Re: Parents of children with harlequin ichthyosis? [Re: joniba]
Hearsay Offline


Member

Registered: 01/16/04
Posts: 1449
Loc: Richmond, VA, USA
Hi, Enis. I sent you an email. Shannon's in the US. I am so sorry to hear about your oldest two boys. How heartbreaking.
_________________________
Jennifer
Ichthyosis-en-Confetti Type 2
Husband, Nathan - 10, Elliot - 7, Oliver - 4, all affected.
I also have an unaffected daughter, age 8.


email: jennifer at confettiskin dot com
facebook - find me on "ichthyosis mommy spot" or "friends of ichthyosis"

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#28754 - 01/03/13 07:29 PM Re: Parents of children with harlequin ichthyosis? [Re: joniba]
Laurensmom Offline
Member

Registered: 12/29/04
Posts: 212
Loc: north billerica, massachusetts...
Enis, I would be happy to talk with you anytime. Jennifer, feel free to pass on my emails ect...

Take care,
Shannon

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