New Parent -- Help!

Posted by: AdamsDad

New Parent -- Help! - 05/03/02 08:56 PM

Hello to all -- I'm thankful to have found this site at the direction of our dermatologist. This may be a long ramble, so I apologize in advance. My wife and I just had our second child. First one born without any complications....second one, not so lucky. He was born with a collodion membrane, and due to complications from that spent 3 wks. in NICU. It shed fairly well, and other complications were corrected. He's been home now for a couple weeks, and we're all trying to adjust as best as possible. We're lucky to have a good Pediatric Derm. here in the area. While our son (Adam) was in NICU, the derm. diagnosed him with EHK. His blistering seems bad to us, but the derm. says it's actually more on the mild side. He's already developing some hyperkeratosis around his ankles, on the inner thigh by his groin, and the backs of his elbows. We've bought stock in the makes of Aquafor (just kidding), and find that it's works well to moisturize. We know we can't prevent the blisters, so we're dealing with it the best we can. The derm. says that the blistering will subide with age, and will likely disappear within a few years. He says there's no way to predict where, or how severe the hyperkeratotic skin will develop. He has told us what the typical areas are, and even said that it's less common on the face, chest, stomach and back. He has also said that the better we keep him moisturized now can help lessen the severity of things down the road. Here's where the questions come. First, does this seem like the typical progression? Is he giving us best case, or average case scenario? What are some of the things we can do now to help with the blistering? I'd love to hear from as many people as possible in repect to your own experience. Needless to say my wife and I are having a difficult time dealing with all of this. If I can get a better understanding of what we're likely to face down the road...1, 5, 10, 15 years, I can then begin mentally preparing myself. I hope to begin communicating with as many of you as possible. I hope I can offer support to each of you, because I know we'll need it back.

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Posted by: pauline5

Re: New Parent -- Help! - 05/04/02 12:36 AM

Hi Adams Dad,

My name is Pauline and I was born with EHK 37 years ago. I can understand your concern when you have a newborn baby with this condition. Be reassured by your dermatologist that this is the usual progression, and the blisters will subside with age. However, blistering may always be a part of the condition but may be better controlled in later years. Such things as friction, heat, over use of the limbs, and even stress or excitement (in my case) may bring them on. A girlfriend just reminded me of the excitement element, as I just got married and have had an outbreak of blisters for the last 10 days, and this is a very rare occurence for me now.

EHK has various subtypes therefore various degrees of hyperkeratosis, and blistering. So I can only speak for myself, and say that I don't get any on my back or stomach, but a little on my face and chest. The main areas are around the joints, knees, arms, armpits ect.

For me becoming a teenager, seemed to bring on a recurrence of blisters and infections and it is thought that the change in hormone levels was attributed to this. But this subsided too and by age 18, I have developed a very good resistance to infections. You will also be pleased to hear that adults who have EHK have a remarkable healing ability. Blisters and cuts abrasions can disappear as quickly as they arrive.

Again, in my case, I developed a tougher ammune system as each year passed, and was better able to fight and heal infections and blisters, as the hyperkeratosis increased. Keeping the areas moist is definitely going to make Adam more comfortable, and less restricted with body movements.

I am hesitant to give you any current advice for a baby, as I don't have any children with EHK and the way my mother treated me may be way outdated now. I was not placed in water for about one and a half years, and she bathed me in liquid parrafin. May I make one suggestion though. Try to be careful that Adam doesn't knock his little arms and legs into any hard bedding, as this will rip his skin open, and cause further blistering.

I know I have gone on and on, but have faith in knowing that with every day that Adam grows he is getting stronger and stronger, and with your love and support he will grow into a very contented and happy child.

Please feel free to email me if you would like to converse more at kimmy89@optusnet.com.au

Take care,
Pauline.
Posted by: Les Avakian

Re: New Parent -- Help! - 05/04/02 03:50 AM

Hello Adams Dad
My name is Les Avakian and may I welcome you to our ichthyosis family and hopefully you will get the answers you are looking for. We have many families with EHK that will be posting their experiences. I hope you have been in contact with the ichthyosis foundation, FIRST, Foundation for Ichthyosis and Related Skin Types. Their telephone number is 1-215-631-1411 and their website is www.scalyskin.org or for info: info@scalyskin.org. Also, www.ichthyosis.com offers a wide variety of information, pictures, and helpful hints to care for your son`s skin.The Ichthyosis Support Network can put you in touch with other families of EHK people who can explain their experiences. Contact Maureen Tierney for that. Take care AdamsDad and welcome. By for now.
Sincerely,
Les Avakian
Posted by: Anonymous

Re: New Parent -- Help! - 05/05/02 03:54 PM

AdamsDad,
My name is Keith, and I have Epidermalytic Hyperkeratosis Bullous form. I'm not sure what kind of EHK Adam has, there are several types. Besides the thickness of the scaling and percentage of area covered there are basically only two main differences. Some of us have EHK that covers our whole body, except for the palms of our hands and soles of our feet. Our face is usually very mildly effected and easily managed with moisturizers. This is the form I have. The other most common form is called EHK Palmo Planter, it is basically the same except that the palms of the hands and soles of the feet are effected, making walking and using your hands very difficult at times. Our hands, feet, knees, ankles, elbows, armpits and buttock areas are the most severly effected areas. Mainly any area that has a joint in it. There is no easy way to put this so I am just going to tell it how it is. The most difficult time for your son is going to be right now. Clothing and diapers are almost impossible to wear. The slightest amount of rubbing or constrictiveness from clothing and diapers will give him blisters, now imagine having a raw spot on your groin area and since you aren't potty trained you wet yourself. It stings like crazy. As a baby my mother dressed me in oversized soft cotton tee shirts turned inside out so the seams didn't tear my skin. I also never wore diapers, believe it or not my mother put a kotex between my legs most of the time instead of a diaper so that the diaper wouldn't blister me. Make sure to keep Adams nails trimmed, hands and feet, if he scrapes his skin with them it will tear open. Cleanliness is extremely important, baths in rock salt, phisoderm, a cap full of bleach and I'm sure other agents are all helpfull at killing the bacteria that builds up in our skin. Water is one of our best friends, it softens our skin and helps shed the scales. After bathing allow your son to dry completely, before putting on any moisturizers or clothing. Our skin actually absorbs water and takes a while to dry. If we don't dry completely and are dressed or moisturized while we are still wet this can trap water in our skin causing a smell and sometimes infections. Some people will disagree with me on waiting to dry before putting on moisturizers or clothing, I haven't had an infection in over 20 years and I rarely get that smell that comes with our skin. Infections, he will get them unfortunately, all of us do or did at one time, sometimes they are isolated and sometimes they spread. Generally they are on our legs, I don't know why. Antibiotics and bathing in things I mentioned above will help with this. Infections do tend to be less frequent as we get older, our childhood is the worst time. Be gentle when handling your son, sliding your hands under him to pick him up can tear his skin, try not to put to much pressure on his skin when handling him, use an open hand when possible, gripping him to tight can tear his skin. We do heal incredibly fast, as a child and as adults, but we scrape and blister easily, I guess it is a tradeoff. Besides his skin care, treat your son as normal as possible. Especially when it comes to socializing, it will have a strong influence on how he handles the rest of his life. You are going to have to educate his schools, friends, other parents on his condition. It isn't contagious, it's just an over production of keratin causing our skin to grow and die to fast. One last thing, and perhaps the most important, find a doctor that knows about ichthyosis, not one who has "seen it before". F.I.R.S.T. may be able to help you out with a list of doctors in your area that have experience with Ichthyosis. I'm not trying to scare you by being so blunt about all of this, more like i'm trying to prepare for the future so that there aren't too many surprizes. I noticed you didn't have a personal email in your profile, please feel free to write my personal email with any questions you might have. keithx1@earthlink.net
Keith.
Posted by: Glori

Re: New Parent -- Help! - 05/08/02 04:27 AM

I probably can't tell you anything that hasn't already been said here, so this is just a "Hi" and feel free to write to me if you need any help or just want to gripe [img]http://www.ichthyosis.com/ubb/smile.gif[/img]
I have EHK and work as a professional researcher, so if you want any information dug up, just let me know!