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#27229 - 12/13/10 05:55 PM Overly Sensitive to Pain
Sideshow_bob Offline


Registered: 02/11/09
Posts: 61
Loc: US, Midwest
Our affected daughter (CIE) is now 6. As background, she was adopted at a year from an orphanage overseas. For the entire time we have had her, she has completely overreacted to even minor injuries. It has gotten so bad that I no longer even react when I hear her screaming and wailing -- her reaction is the same for a simple scratch as that for a major injury. Before we seek professional guidance on this as an emotional issue, we wanted to see if it was skin related. I do know that children with ichthyosis have more nerve endings than "normal" skin, and that they tend to be more sensitive to temperature of bath water, etc. Is anyone else experiencing this with their affected child?
6 year old daughter with CIE (non-bullous)and a non-affected infant daughter.

#27230 - 12/13/10 11:00 PM Re: Overly Sensitive to Pain [Re: Sideshow_bob]
Glori Offline


Registered: 08/14/00
Posts: 499
Loc: Elk Rapids, Michigan
I just had to comment on this...I have EHK and most people think that I overreact to pain.
When I bang my shin, I experience this moment of blind pain and I can't even move. For days that spot will hurt but there is no bruise and this is even when I don't lose any skin at all.
Stuff like that just HURTS and I know it seems over the top to many people and I can't explain it.
If it's something that involves losing some skin, that really hurts and it seems to linger for days. On the other hand, I have given birth to a child and tolerated that better than I do cracking my shin on a trailer hitch.
I don't know if this helped, but that's my story.

#27272 - 12/20/10 02:17 PM Re: Overly Sensitive to Pain [Re: Glori]
MamaH2 Offline

Registered: 11/27/08
Posts: 77
Loc: Virginia
Ivy is most certainly more sensitive to water temperature. She does best in lukewarm water, anything that I think is slightly warm, she finds hot. I think that's because of the raw skin. Think about how it feels when you have a wind burn, sunburn or chapped skin. That skin is more sensitive than your unaffected skin. I imagine this is how if feels for Ivy. Ivy has palmar plantar EHK.

The only thing that doesn't bother her is when she touches something really hot or really cold with her hands or feet! The layers of skin help her with that!


#27280 - 12/26/10 08:33 PM Re: Overly Sensitive to Pain [Re: MamaH2]
PsychGal Offline


Registered: 04/10/07
Posts: 70
Loc: By a large mountain
Just saw this and thought I'd weigh in....

In my opinion, it is pretty darn impossible to differentiate her sensitivity from a skin issue to sensory integration difficulties I know you've had historically. It has been my understanding that hyper/hypo sensitivity is super common with SID. That said, I have also known children who experience more or less pain depending on what phase their skin is in, but I've personally noticed it tends to be the more severe icthyosis types. That's just anecdotal though, and I'm guessing you'll have to wait till she's older and can more accurately describe her experience to distinguish what is really going on.

#27328 - 01/12/11 04:24 PM Re: Overly Sensitive to Pain [Re: PsychGal]
rodkarbrown Offline

Registered: 05/23/05
Posts: 148
Loc: Rochelle IL USA
Our daughter has Netheron Syndrome and she is 8 years old. She seems much more sensitive to pain than her twin sister does who is not affected.

Karla Mom to twin girls from Haiti, Kaylee (Netherton Syndrome) Kylee not affected.

#27383 - 02/02/11 07:35 PM Re: Overly Sensitive to Pain [Re: rodkarbrown]
Leandra Offline

Registered: 09/06/05
Posts: 95
Loc: Colorado Springs, CO, USA
I have to echo what PsychGal mentioned about the sensory integration bit. Our 5-year-old also has mild SID and often seems to have a very low threshold for pain or discomfort. To wit, her coping skills are not always very strong, although they have improved. SID was difficult to diagnose with much certainty as it has historically been difficult to differentiate which of her issues are ichthyosis related.

Edited by Leandra (02/02/11 07:36 PM)


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