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#25632 - 12/10/09 01:47 PM Help with Questions!!
MomofPrincesses Offline
Member

Registered: 06/27/09
Posts: 254
Loc: Mobile, AL
We got see a pediatric derm that specializes in genetic skin disorders on Monday and I need to get my list of questions together. Kallie is 6mo old, do you all have any suggestions on the questions that I need to ask??? Any help would be greatly appreciated!
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Kati, Mom to Kennedy Jane (March 2007 -- unaffected) and Kallie (May 2009 -- collodian layer and no diagnoses yet)

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#25637 - 12/12/09 01:03 AM Re: Help with Questions!! [Re: MomofPrincesses]
brandynsmum Offline
Member

Registered: 08/25/08
Posts: 269
Loc: Connecticut
Hi Kati!
What have you got so far? Perhaps I can elaborate and think of a few more laugh

do you have an official diagnosis yet?
_________________________
My name is Morgan. My son Brandyn was born on 26th June, 2008 in Sydney, Australia as a collodion baby and has been diagnosed with lamellar ichthyosis.

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#25639 - 12/12/09 05:44 PM Re: Help with Questions!! [Re: brandynsmum]
Keith Offline
Member

Registered: 07/29/09
Posts: 48
Loc: Southern California
First of all, make a list of problems you are having of any kind, exfoliating, cracking, moisturizing etc. It helps to sit down calmly before you go and make a list of these things because we all get nervous with a new doc and forget to ask half of the stuff we wanted to. Take the list with you and go over it with the Dr. My first question when seeing a new doctor is usually if he has ever seen/treated Icthyosis before. Since you have no diagnosis yet ask what type they think your child has and see if they can do a genetic test to confirm it. At such a young age they may not be able to give you an accurate diagnosis by just a visual examination. If he/she has no experience with it more then likely you'll be teaching them and the Dr. may really be of no help to you, hopefully this won't be the case. You'll have to play it by ear from then on.

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#25640 - 12/13/09 04:51 PM Re: Help with Questions!! [Re: Keith]
MomofPrincesses Offline
Member

Registered: 06/27/09
Posts: 254
Loc: Mobile, AL
Morgan --

1. Scalp -- Treating it as hair grows in
2. Ears -- How do we treat buildup in ears
3. Constipation common with Ick?
4. Sweating and heat
5. Swimming pools

Keith -- This doctor is a pediatric derm that specializes in genetic skin disorders so I am assuming and hoping that she has more experience with ick than a typical doc or derm.

Thanks everyone for your suggestions, I am going to add the genetic screen b/c I do want her to check that. Also preventative treatment for skin infecitons
_________________________
Kati, Mom to Kennedy Jane (March 2007 -- unaffected) and Kallie (May 2009 -- collodian layer and no diagnoses yet)

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#25642 - 12/14/09 12:51 AM Re: Help with Questions!! [Re: MomofPrincesses]
brandynsmum Offline
Member

Registered: 08/25/08
Posts: 269
Loc: Connecticut
I think your questions are great smile Many people with ich see an ENT for the ear issues so you may want to ask whether or not she thinks Kallie should see an ENT. The other is eyes..From the pics you've posted, Kallie's eyes look similar to brandyn's (ectropion isn't much of an issue) but the corneas can still dry out and get scratched so that might be another thing to ask.

I think your good though!! Good luck and let us know how you go wink
_________________________
My name is Morgan. My son Brandyn was born on 26th June, 2008 in Sydney, Australia as a collodion baby and has been diagnosed with lamellar ichthyosis.

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#25643 - 12/14/09 04:59 PM Re: Help with Questions!! [Re: brandynsmum]
cschaap Offline
Member

Registered: 07/06/09
Posts: 71
Loc: Crown Pt., Indiana
I didm't know the eyes could still dry out if they didn't have the ectropion. How do you know if the eye gets scratched? One of kenny's eyes gets alittle red and puffy sometimes but I thought maybe it got irritated by the lotions. Should I be looking for certain signs that could be a problem?

Thanks for your help.
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My name is Candace. My son, kenny was born May 19, 2009 diagnosed with Lamellar Ichthyosis. My daughter Chloe was born June 4, 2011 unaffected.

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#25644 - 12/14/09 08:14 PM Re: Help with Questions!! [Re: cschaap]
brandynsmum Offline
Member

Registered: 08/25/08
Posts: 269
Loc: Connecticut
Hi Candace, Brandyn rubs his eyes a lot (only sign) but we have been seeing an opthamologist since he was born (every 3 months). He does a test where he puts these orange drops in his eyes and then looks into them with a special light where he can see scratches on the corneas. Hope that helps.. It may not be an issue for Kenny but it's just a good question to ask the derm. The eyes are made up on skin cells too so there is a potential for issues.
_________________________
My name is Morgan. My son Brandyn was born on 26th June, 2008 in Sydney, Australia as a collodion baby and has been diagnosed with lamellar ichthyosis.

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#25647 - 12/16/09 04:08 AM Re: Help with Questions!! [Re: brandynsmum]
cschaap Offline
Member

Registered: 07/06/09
Posts: 71
Loc: Crown Pt., Indiana
Thank you I will definitely ask about that because Kenny does rub his eyes a lot.

_________________________
My name is Candace. My son, kenny was born May 19, 2009 diagnosed with Lamellar Ichthyosis. My daughter Chloe was born June 4, 2011 unaffected.

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#25653 - 12/17/09 03:39 PM Re: Help with Questions!! [Re: cschaap]
kekonen Offline
Member

Registered: 12/14/09
Posts: 58
Anxious to hear what the doctor said. (I think we're seeing the same dermatologist!)
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Karen
Mom to Annalie born 7/17/09 (Mild Lamellar) & Hadley born 3/20/06

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#25662 - 12/18/09 08:22 PM Re: Help with Questions!! [Re: kekonen]
MomofPrincesses Offline
Member

Registered: 06/27/09
Posts: 254
Loc: Mobile, AL
Karen -- Where do you live? The doc we are seeing is Dr Theos at UAB.

She did mention the ENT and we saw one on Wed and were pleased! She also mentioned the eyes and we have been seeing a pedi eye doc since she was born and he released us at 4mo b/c her eyes were looking great!
_________________________
Kati, Mom to Kennedy Jane (March 2007 -- unaffected) and Kallie (May 2009 -- collodian layer and no diagnoses yet)

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