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#10009 - 09/10/03 11:24 AM 13 week old baby - just found out he has Ichthyosis
Gavinsmommy Offline
Junior Member

Registered: 09/10/03
Posts: 3
Loc: St. Peters, MO, USA
We do not know what kind yet. I have to schedule an appointment with a ped dermatoligist today. They think it is X-linked or the Vulgarious (sp?)
I have several questions.
1. How do I keep his ears clean, both of them are almost plugged shut.
2. Do some boys grow out of it?
3. How much worse does it get during the winter?
I have so many questions, no one in my family has ever had this- so the family is shocked.
Thanks,
Kathi

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#10010 - 09/10/03 01:29 PM Re: 13 week old baby - just found out he has Ichthyosis
Les Avakian Offline


Member

Registered: 08/13/00
Posts: 680
Loc: Fresno, Calif. USA 93705
Hello Kathi
Welcome to our ichthyosis family and we are all here to help.My name is Les Avakian and I have X linked. My first recommendation would be to contact our ichthyosis foundation, FIRST(Foundation for Ichthyosis and Related Skin Types at 1-215-631-1411 or info@scalyskin.org. Jean Pickford and Maureen Tierney have an abundance of information on ichthyosis.Our foundation also has an ichthyosis support network to help you network with ichthyosis people and families.
For X linked, a simple blood test or skin biopsy will determine if your son has the steroid sulphatase deficiency. His cholesterol sulphate level will be enormously high.I will defer your particular question about ear care to the moms.We dont grow out of this condition, but as I have aged, feel my skin has gotten better after adolescence.Also the skin care products are so much better.I think the region you live in determines the severity of our winter skin problems.Southern California and Florida is much more mild compared to the midwest and east coast climate.Kathi I know you have an abundance of questions,and we are all here to help you.In fact,in July, our national ichthyosis conference will be in Kansas City Missouri and we hope you can attend.Also,check out the foundation website, www.scalyskin.org.Take care Kathi
Sincerely,
Les
_________________________
Les Avakian

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#10011 - 09/10/03 03:02 PM Re: 13 week old baby - just found out he has Ichthyosis
Chandra Offline
Member

Registered: 11/20/00
Posts: 707
Loc: Grants Pass, OR
Hello Kathi, Gavin et al,

That's great that there's a pediatric dermatologist in your area. If that derm isn't aware of FIRST, you might want to give them the web site address and phone number too, as they can hook the doctor up with information resources just as they can do for you.

Like Les, I'll let a mom answer your question about ear cleaning, but I can say that most likely it will involve using a product called "Debrox" and cotton swabs.

While ichthyosis of any type never goes away, for some of us it improves with age, and for most of us, there are a lot of medicated and non-medicated moisturizers that will really help Gavin look and feel much better.

There are even a few drugs, called retinoids, that might help Gavin, however the general consensus amongst most folks on this bulletin board is that the person with ichthyosis be allowed to choose whether or not to take the drug, and at minimum the person should be past puberty.

When you have got the time, I would sit down and go through this entire forum. There is A LOT of information here. If you can't find something you want to know about, or you don't understand what was discussed, by all means, bring it up. We're more than happy to review information for you that's already been covered but you might get information faster (rather than having to wait for one of us to respond) if you look over the old threads. Also, no question is too silly, insignificant, or stupid! If you have a question, chances are someone else that either is or will someday read this board will want the same information.

FIRST can also help you find someone in your general geographic area who has ichthyosis or is the close relative (such as a parent) of someone who has ichthyosis as a type of "mentor." Whenever possible, they try to match up folks dealing with the same type of ichthyosis.

Most of all, I want to reassure you that while the path the whole family and not just Gavin takes through life might have a few unexpected twists due to his ichthyosis, he should be just fine. He has as much potential as any other child to live a happy, healthy, loving and productive life.

There are many adults on this board with ichthyosis of varying types, many teens, and parents of younger ones. We're all here to support and encourage one another, and that includes you.
_________________________
I am female, and was born in 1972 with Lamellar Ichthyosis.

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#10012 - 09/16/03 07:11 PM Re: 13 week old baby - just found out he has Ichthyosis
threerxli Offline
Member

Registered: 01/14/03
Posts: 515
Loc: virginia
Hello Gavinsmommy, I just read your message today, did you find out what type of ichthyosis he has? I have three boys with x linked ichthyosis, I did not know I was a carrier until I was pregnant with my second son. Talking to relatives that never quite knew what they had, I found out it was x linked ichthyosis, some of them had better skin as they became older...some stay the same. I think as far as winter goes, it depends where you are, the severity of the ichthyosis (my three boys are affected differently) and the severity of the winter. I would answer any questions you have, just email me, even if its just to have someone listen.

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#10013 - 09/16/03 09:16 PM Re: 13 week old baby - just found out he has Ichthyosis
Gavinsmommy Offline
Junior Member

Registered: 09/10/03
Posts: 3
Loc: St. Peters, MO, USA
Thank you all for your reply. We still do not know what form he has, after reading more about this I really think he has X-linked because he has had it since the day he was born, but wil will know for sure after some test are run. We went to the ENT Friday and his ears look good. They gave us some drops to put in everyother day, and we will go back in a couple of months. The Aquaphone is not really doing much for him yet, but I will give it a couple of weeks. I am much more relaxed about this now. At first we were so shocked- not really knowing what Ichthyosis was. But I realize we are blessed with a beautiful boy who is happy and healthy. I will do whatever it takes to make sure he stays that way.
Thanks again! I plan on visiting this site frequently!
Kathi

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