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#12499 - 06/29/08 06:07 AM
Re: Netherton Syndrome
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Member
Registered: 06/23/08
Posts: 15
Loc: los angeles, CA
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Hi Becky and Tammy, thank you for your replies. I've ben reading the discussions boards every chance I get and I learned a lot from your inputs.
I'm particularly worried about my son's growth. He hasn't gained anything in 2 months. I'm still exclusively breastfeeding him and since he was tested allergic to peanuts and eggs, his immunologists advised us against feeding him solids right now. He thinks there's little benefit in it. He was born at the 5th percentile but is now going lower in his growth charts. Im worried that this will go on. He eats normal - it's just that he peels too much and uses up too much calories from his skin. I guess im asking for any suggestions you may have regarding feeding issues.
Second. The only thing I can use on him is aquaphor. I don't use anything in the bath. Im still in the lookout for a bath product that is gentle enough for him. AGain, I would welcome any suggestions.
For itch and pain (there are times my little baby screams in so much pain when his skin is so inflammed and painful to touch), we use tylenol and hydroxizine. Im not a big fan of pills, and I avoid them if I could. I worry that if hydroxizine knocks him out, then it must be affecting his central nervous systm, therefore could be bad for him. Any thoughts on this?
On his peeling/scaling/inflammation: There are bad days and there are REALLY BAD days. Then there are some better days. In your experiences, is this just a cycle? What triggers the break outs? And if it's just a cycle, then no amount of therapy will help him, right? The break outs will just come and go. I'm asking because the doctors tend to put him antibiotics when Nate's skin gets bad. Sometimes he gets better. Sometimes he doesn't.
Thank you for your patience because there will be more qustions to come. I feel blessed to have found you, ladies.
Karen
------------------ my baby is one in a million.
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#12500 - 06/29/08 02:57 PM
Re: Netherton Syndrome
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Member
Registered: 09/28/06
Posts: 128
Loc: Brooklyn Park, MN USA
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Hi Karen,
For his bath, see if you can find Aquaphor Gentle Wash, I have found it at CVS Pharmacy it is a non soap cleanser, extremly gentle. I use it on myself. Also talk to your pharmacist and ask if they can order you Phisoderm, or Phisohex (basically the same thing) my mom used the phisohex on us from the time she brought us home from the hospital, because it was gentle, but also helped at keeping skin infections away. Otherwise just plain water is just fine. I am 37 years old and I can still only use Aquaphor. Make sure that the jar you have says Aquaphor Original Ointment and NOT Healing Ointment. The aquaphor company has recentley changed its formula and the healing ointment has more alcohol in it and it really made a mess of both mine and my brothers skin. You can also have your doctor fax a letter to Beiserdorf (makers of Aquaphor) explaining Nate's diagnosis and that he must have the original aquaphor. They will then send you a free case of Aquaphor and you can renew that every 3 months. I just received my case about 2 wks ago.
Keep up with the hydroxizine and tylenol, but add benedryl to the mix also. I know that you are worried about it affecting his central nervous system, but don't. Again my brother and I are just fine and we have taken the benedryl and hydroxizine our entire lives, the key is to get it into his system on a regular basis. I still take benedryl and hydroxizine when I start to itch really bad. I also agree with Tammy, the skin does improve with age.
As far as the peeling and inflammation goes, there really is no rhyme or reason as to why it does what it does when it does it. The best that you can do for him is to keep him comfortable, and cool. The warmer I get the more I seem to itch. Now as I have gotten older, I tend to have skin breakouts during the change of seasons.
As far as the weight gain goes, I would probably start him on rice cereal, because his little body is losing so much fluid through his skin, he really needs the extra added calories. We also are allergic to peanuts and eggs, we got rice cereal at 2 wks of age. When you decide to quit breastfeeding make sure that he is tested for a milk or soy allergy. He definitly needs more calories. I hope that this helps and please please email me anytime, and I hope that I have been some help.
Talk to you soon, Becky
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#12502 - 06/30/08 11:35 AM
Re: Netherton Syndrome
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Member
Registered: 01/16/06
Posts: 94
Loc: Brisbane, Australia
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Hi Karen, Our daughter, Lucia, has NS - she will be 3 in October. Failure to thrive, allergies, peeling skin, infections - I totally understand all your concerns. Please feel free to email me for a lengthy chat on specifics - we are still learning, but thanks to others such as Tammy and Becky, there is help and advice. Take care, Francesca
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#12503 - 06/30/08 02:18 PM
Re: Netherton Syndrome
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Member
Registered: 01/14/08
Posts: 32
Loc: Dorr, MI, USA
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Hi there! My name is Wendy and my 13mth old son Tyler also has Nethertons. If you have any questions or problems, please feel free to email me! Being they are close in age, I totally understand what you are going thru! But even in this past year, I have noticed an improvement in his skin (not as much peeling, not as much redness). It does seem that the skin goes in cycles...bad one day, good the next. Its very frustrating and at many times you feel like your the worst mom in the world because it seems like you can't do anything to make him feel better. But you did the right thing by coming to this site...the mothers here and the adults with Nethertons (like Becky, God bless you Becky!) have been life savers! We just got back from the FIRST conference yesterday, and I am so glad we went. NOt only did we get to meet so many wonderful people, but also other children and adults with Nethertons. We were a small group, so all of us became very close by the end of the weekend [img] http://www.ichthyosis.com/ubb/smile.gif[/img] As for the weight issue, that is a problem for all NS kids, some worse than others. Luckily, when Ty was born at 32 weeks he weighed a whopping 7 pounds! But he SLOWLY gains weight. He still is below the 5th percentile for weight (18pounds). As for baths, I use Cetaphil Wash on him, and put Robathol Bath oil in his bath water. The oil really seems to sooth his skin! His main staple is Aquaphor (the original ointment). I also sometimes use Gentle Naturals Baby Eczema ointment when he seems itchy. I'm not sure if it works well, but its worth a shot! As for meds, I have him on Benadryl. I tried Zyrtec, but that didn't seem to help much. He just got his allergy testing results and it came back that he is allergic to wheat, eggs and peanuts. Plus a bunch of enviromental allergies! So its VERY hard to get the itching to go away. I could keep going and going and going on my little guy, so please feel free to email me with any questions.
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#12504 - 07/02/08 06:29 PM
Re: Netherton Syndrome
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Member
Registered: 06/23/08
Posts: 15
Loc: los angeles, CA
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Thank you all for your concern and replies. I realize we're all in this battle together and i'll say this again, i feel so lucky to have found this site and you ladies.
Becky, my husband ordered the original formulation of aquaphor as soon as we read your reply. I didn't even realize that there's another formula. We've always used the healing ointment. Besides the alcohol content, is there any other differences?
Since my baby was 3mos old, the doctors have put him on topical steroid therapy, but 3 weeks ago after he was diagnosed with NS, we stopped all steroids and just stuck to aquaphor. This was according to the STanford doctors' recommendation, which I totally agree to.
However, when we came back to Los ANgeles and went back to UCLA where Nate is regularly being seen, the pediatric derms tried to convince me and my husband that steroid therapy is still beneficial for him. I totally disagree because I know that my baby's skin barrier is compromised and that systemic absorption of anything put on his skin is highly likely. I don't know why the UCLA docs are very keen on this. In fact, they even wanted us to try Protopic, which I read caused cancer (lymphona) in rats!
I have a strong desire to look for another doctors. I liked the doctors at Stanford but we live in LA, and it just wouldn't work.
DOes anybody in this board live in Los Angeles area and can recommend a good pediatric dermatologist?
Thank you.
-Karen
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