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#28305 - 04/01/12 04:25 PM Parents of children with harlequin ichthyosis?
joniba Offline
Member

Registered: 04/01/12
Posts: 5
Are there any parents of children with harlequin ichthyosis here?
Any connection to such parents would be appreciated.

Thanks
Joni

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#28313 - 04/02/12 07:18 AM Re: Parents of children with harlequin ichthyosis? [Re: joniba]
Hearsay Offline


Member

Registered: 01/16/04
Posts: 1449
Loc: Richmond, VA, USA
Welcome! As fae as I know, there are 2 parents of young children with HI and 2 or 3 parents of grown children. They don't come on much, but I do see them on facebook. Find the group "friends of ichthyosis" and I'll hook you up with them. How old is your baby, and have you found FIRST yet?
_________________________
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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#28364 - 05/03/12 11:25 AM Re: Parents of children with harlequin ichthyosis? [Re: joniba]
Laurensmom Offline
Member

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

My daughter, age 8 years, is affected with Harlequin Ichthyosis. Are you a parent?

Shannon

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#28413 - 05/20/12 08:43 AM Re: Parents of children with harlequin ichthyosis? [Re: joniba]
joniba Offline
Member

Registered: 04/01/12
Posts: 5
Jennifer thank you, I will look for the group on Facebook.
Shannon, yes, I am a parent. My son, Omri, is now 7 weeks old and has HI.
Our biggest difficulties at the moment are with feeding him. We were given a special baby food by the doctors that is very high in calories. I'm not sure if it's related but Omri has trouble eating enough, and seems to have terrible pain from gas. He screams a lot and it seems to be related to digestion. When he eats he eats until he starts crying.

Shannon did your daughter have ectropion when she was born? Omri does and it doesn't seem to be improving. The eye doctor says he will not have eyelids really. So how do they close their eyes?

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#28416 - 05/21/12 06:26 AM Re: Parents of children with harlequin ichthyosis? [Re: joniba]
Hearsay Offline


Member

Registered: 01/16/04
Posts: 1449
Loc: Richmond, VA, USA
Brenna had to have skin graft surgery to create eyelids. In the meantime, both before and after, you have to apply eye ointment like Lacrilube or ClearEyes or GenTeal to keep the eyes moist.

Could your son have reflux?
_________________________
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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#28423 - 05/22/12 10:20 AM Re: Parents of children with harlequin ichthyosis? [Re: joniba]
janesmomma22 Offline
Member

Registered: 11/24/08
Posts: 10
Im a parent my daughter is 3 with HI,jane had ectropion and had surgery to correct it,it worked well i still Use eye ointment.

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#28467 - 06/06/12 02:09 PM Re: Parents of children with harlequin ichthyosis? [Re: joniba]
joniba Offline
Member

Registered: 04/01/12
Posts: 5
Thank you for answering everyone. I'm sorry I haven't replied. We are so busy just getting through every day and trying to get a little sleep in as well that I don't find the time for it.

We are in the hospital since the weekend because Omri had a temperature and they thought he has an infection in the blood. Turns out he may not have an infection after all though he's been getting antibiotics for several days. But he seems to still be feeling very bad and not eating well and crying a lot more than usual and sleeping very restlessly in the little time he does sleep.

We're very concerned now about his eating. I think he does have mild reflux though he doesn't spit up much. Did your children have unusual trouble eating? Did they seem to be in pain a lot of the time? How many baths did you give them a day when they were babies? How often did you put creams on them? Did the skin ever reach a point where it got too thin and even the soft pink layer peeled to reveal red raw flesh?

We have a skin doctor and many other doctors but no one seems to really have answers for us.

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#28469 - 06/06/12 07:47 PM Re: Parents of children with harlequin ichthyosis? [Re: joniba]
Hearsay Offline


Member

Registered: 01/16/04
Posts: 1449
Loc: Richmond, VA, USA
Joniba, have you contacted FIRST? I called and asked and they said that they didn't know about you. There are SOOO many resources available through them. 215-997-9400. Please call! Or give me your number or email via IGM and I'll get you to the right people. I hate to think that you're going through this alone.
_________________________
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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#28476 - 06/08/12 03:32 AM Re: Parents of children with harlequin ichthyosis? [Re: joniba]
joniba Offline
Member

Registered: 04/01/12
Posts: 5
Hi Jennifer, I contacted FIRST when Omri was first born and spoke briefly with Dr. Fleckman. But I am in Israel and he just referred me to the specialist here. I will try to call the number you gave me anyway. What is IGM?

Joni

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#28478 - 06/10/12 02:21 PM Re: Parents of children with harlequin ichthyosis? [Re: joniba]
Hearsay Offline


Member

Registered: 01/16/04
Posts: 1449
Loc: Richmond, VA, USA
Joni, that explains why no one has heard about you here. I didn't realize that you are in Israel.

I'll look into what contacts we have out there and get back to you. In the meantime, definitely keep in touch with the other posters in this thread, who also have children with HI. Another mom with a child only a few months older than Omri is here: http://blessedbybrenna.blogspot.com
_________________________
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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#28485 - 06/15/12 10:15 AM 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 12:13 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 02:46 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 11:32 AM 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 11:35 AM 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 06:55 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"

Top
#28754 - 01/03/13 02:29 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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