Netherton Syndrome

Posted by: westhillsmom

Netherton Syndrome - 06/26/08 06:02 PM

Hello everyone. My son Nate, 8mos old has just been diagnosed with NS. The shock, sadness, frustration and depression has passed so I guess it's time to face this condition head on - first by trying to find out everything about this disease. I've read some of th messages in the boards and noticed that most of those with NS are females. Are there any males around (at least in this site?)

I have to many questions that not even the doctors can't answer. I believe those who have battled it are the ones who can actually offer me something. I don't know where to start, but i guess im not going anywhere so ill keep coming back to this dicussion boards.

I would appreciate any information from fellow-parents or individuals with NS. I feel one with you. I a so glad I found this site.

my baby is one in a million.
Posted by: texlex99_dup1

Re: Netherton Syndrome - 06/26/08 08:08 PM

My name is Becky and I'm 37 years old and I have NS, as does my brother who is 38. I would love to answer any questions that you might have in regards to NS. Please feel free to email me, or we can chat on the boards also. I look forward to hearing from you.

Posted by: BraedensMom

Re: Netherton Syndrome - 06/26/08 11:52 PM

Hello there,
My name is Tammy and I have a 8yr old son with Nethertons. If you would like to chat please feel free to contact me at anytime. You will find this board to be of most help. There are others with Nethertons that vist here. I just wanted to Let you know that this skin condition does improve with age. When I look back at some of his baby pictures its hard to believe we have the same child.
Do you have any specific questions???

Take care,
Posted by: westhillsmom

Re: Netherton Syndrome - 06/29/08 06:07 AM

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.


my baby is one in a million.
Posted by: texlex99_dup1

Re: Netherton Syndrome - 06/29/08 02:57 PM

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,
Posted by: BraedensMom

Re: Netherton Syndrome - 06/30/08 01:47 AM

Your story sounds so much like ours. Breaden was almost 9 pounds when he was born and he was failure to thrive. Not to scare you we put a feeding tube in him cause he just wouldnt eat. We had many problems with this though and I still go 50/50 on it. Braedens skin as we called would cycle for no reason for about 2 days and then he would go through a peeling stage for about a day or 2 then the skin would like fine for a few days. We started using Ibuprofen when he got a little older and I think that It did the most for him for the pain. I didnt use hydoxazine that much it didnt seem to help us much for the itching. We used something that I dont think they make anymore. We did use Benadryl alot.He would wake up 5-6 times a night itching. I to had a hard time giving these meds to my child. Looking back now I wish I had given him more. He was hurting more than I ever thought. The itching was driving him crazy.
We had to use a special formula for Breaden it was called neocate. He is allergic to milk and still is. We sometimes would put MCT oil in the formula and there was a powder also, this was for extra calories. I cant say I seen a huge weight gain. We watched him gain every ounce, one at a time. It was such a battle. He is almost 9 and I would say he is still very small for his age hes about the size of a 6 or 7 year old. We barley made the charts when he was really little.
I used to think putting Braeden on antibiodics would help his skin. but he was in the hospital and was on three very strong ones and his skin would still cycle.
As he Got older they came less frequent and not so severe. You do have to watch to make sure they dont get staph infections though.
When Braedens skin was really bad I would make people wash there hands before touching him.
Please ask as many questions as you would like. I wish I had this board when Braeden was little. I would even be willing to call you and visit. Becky will be a huge help also and there a more great mothers out there too. Take care and I will keep you in our prayers.
Posted by: Francesca

Re: Netherton Syndrome - 06/30/08 11:35 AM

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,
Posted by: wbreen

Re: Netherton Syndrome - 06/30/08 02:18 PM

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][/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.
Posted by: westhillsmom

Re: Netherton Syndrome - 07/02/08 06:29 PM

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.

Posted by: texlex99_dup1

Re: Netherton Syndrome - 07/02/08 09:17 PM

Hi Karen, Hope all is going well. I do mostly agree with you about the topical steroids, except for: My brother and I have been using a compound mixture of 2% hydrocortisone mixed in a whole jar of aquaphor. The pharmacist has to make it up and it is only available with a rx. We have been using that combo since birth. We don't use it everyday, but we use on spots that are really red and inflammed. Usually my legs tend to be worse than the rest of me so I use it about 2-3 a wk. Please don't worry about the absorption or any other effects. I would stay away from the Protopic like you said. Another one to stay away from is Elidel. I tried that once and it made my skin worse, and I just found out recently that it says right on the package "do not use if you have Nethertons Syndrome." How is the itching going? How does he do with heat?

Have you been able to check into the free aquaphor program? That is really worth doing, you get 12 jars of the original formula free.

Can't wait to hear from you again.

Posted by: westhillsmom

Re: Netherton Syndrome - 07/03/08 12:05 AM

Becky, the aquaphor issue is another reason why I am inclined to change ped-derm. WHen I told my son's derm that I would like
to switch to the original formula aquaphor, he told me that he recommends nothing else but the healing ointment and that he knows of no other formulation besides that. End of discussion. I would really want to get my hands on that free aquaphor original if I could.

It is just so difficult to talk to our ped-derm. One of his minions (residents) would come in and talk to us, we can tell him what we need to say, he writes it down, goes out and briefs his boss,
The Derm then comes in, talks rather fast, sometimes he won't even pause to listen to what I have to say - then leaves the room leaving the resident to write the Rx and other instructions. Given that my baby would be seeing a pediatric derm possibly throughout his entire life, I just wish we have someone we trust and would work hand in hand with us.

Tammy, our immunologist prescribed Neocate and Ele-Care to supplement Nate's feeding. The problem is, he wouldn't take the bottle. Two days ago though, he started taking the formula in plain glass (must make him feel like a big guy!). It pleases me that he takes about 4 ounces of formula a day (in addition to breastmilk). He doesn't like the taste of Neocate though. I tried it myself and its terrible [img][/img]

Wendy, we've ordered Robathol. Thank you for the recommendation. We have yet to use it though, it just arrived today. I also ordered Free & Clear bath. We've been using nothing but Cethaphil on him.

Question. How do you deal with the scaly scalp? Before the diagnosis, I used to use Derma-Smoothe on Nate. Now I only use baby oil. I just pick on his scalp most of the time [img][/img]

my baby is one in a million.
Posted by: Les Avakian

Re: Netherton Syndrome - 07/03/08 12:55 AM

Hello Karen
Many of us just returned from the national ichthyosis conference in Chicago so hopefully more will post. As for your question on pediatric ichthyosis doctors on the west coast,I consider Dr. Mary Williams at the Univ. of California, San Francisco Dermotology Dept. to be the best informed about your child`s type of ichthyosis. Also you can contact Jean Pickford or Moureen Wenik at our foundation at to become a part of our Ichthyosis Support Network to put you in touch with mothers of netherton children. If you would like to chat, my email is Take care Karen.
Posted by: wbreen

Re: Netherton Syndrome - 07/03/08 03:01 PM

As for the scalp, that is an un-ending battle! I can say that Tyler's scalp is easier to handle now than it was when he was an infant. Our routine is when he wakes up in the morning is rub baby oil in his scalp. We then have breakfast, plays a little, while I get his bath ready. In the bath, I first pour the water on his scalp to get it moistened. Then I use Cetaphil wash on his scalp and massage it in. I let it sit on his head (sometimes I put a warm wet washcloth on his scalp to help keep it moist, but that all depends on if he keeps it on!). So once I'm all done washing his body and face, I'll take a wash cloth (one that is a little rough) and with circular motions, gently rub off the scales. He's usually pretty good for it, for a little while at least [img][/img] I also use a fine toothed comb to help bring up more of the skin. He does not like that, but it really works well. At night, I will also lube his scalp up with the original Aquaphor ointment.

I also recommend you contacting Dr. Williams. I met her at the conference, and she is VERY knowlegeable about Nethertons!
Posted by: texlex99_dup1

Re: Netherton Syndrome - 07/03/08 07:29 PM

Karen, I agree with wbreen, contact Dr. Williams, it is so very important to find a doctor that is going to listen to you.

I also agree with how wbreen does the scalp issue, after talking with my mom, she said that during our bath, she would put a warm washcloth on our heads and just let it sit for as long as we would leave it there, and keep rewarming it during the bath. And then using the fine toothed comb. She said that it is much easier to do it everyday, and it keeps the scale under control. I still put aquaphor on my head at night also.

Posted by: westhillsmom

Re: Netherton Syndrome - 12/09/08 03:42 AM

Hi Becky and wBreen, this is quite a bit delayed, but who is dr. Williams, what's her full name and what hospital in what state is she affiliated with? thank you both!

Posted by: Rhythm_N8

Re: Netherton Syndrome - 11/02/11 01:13 AM

Well this is sort of strange but there is at least one male here and his name is also Nate. I'm not sure if I can be any help but if you're still around feel free to say hi and ask anything you want.