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#23458 - 12/14/08 08:27 PM LI and itching
brandynsmum Offline
Member

Registered: 08/24/08
Posts: 269
Loc: Connecticut
Hi! My son Brandyn has LI and has been scratching a lot recently..specifically behind his ears, scalp, chest and thighs. Our dermatologist says that itching is not associated with LI and therefore believes that Brandyn has eczema too. I'm not so sure of this though because the itching gets worse as he goes through periods of being very scaly. Also, the derm. gave us two steroid creams to try and they have done nothing.
As of now, he's still scratching regardless of the fact that I'm putting cream on him almost every hour and he's actually breaking the skin behind his ears frown

Any advice? Also, is itching associated for LI?

I'm currently using QV repair cream, Eucerin and Alpha Keri lotion.
_________________________
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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#23464 - 12/15/08 09:59 AM Re: LI and itching [Re: brandynsmum]
BritMum Offline
Member

Registered: 07/25/08
Posts: 226
Loc: UK
Our daughter has CIE and when she was younger she too used to go hell for leather behind her ears and side of her neck! All we could do was gloop her up with epaderm in order to try to make it so her fingers just slipped over as opposed to the nails taking the skin off. At times this failed though!! On one occasion she literally took all the skin of one side of her neck as she'd been scratching when the childminder had put her down for a nap! Now at 22 months, she's taken to scratching at her heals at every given opportunity (ie, when her tights/socks are off)!! I have to admit that I feel part of this has become habit as surely she would scratch all the time if it truely itched!

Our derm said that some degree of eczema goes hand in hand with Ich but it doesn't necessarily present as it would without Ich due to how the skin forms! We use Eumovate occasionally if the skin where she's scratching looks inflammed. After a couple of days this seems to settle it (until the next time).

On a general note, I would guess that fundamentally if the skin gets dried out too much it will itch. I know mine does after a while if I forget to moisturise after cleansing (and I don't have Ich) as the skin gets tort.

Good luck!

J x

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#23472 - 12/15/08 07:59 PM Re: LI and itching [Re: BritMum]
TMPOL Offline
Member

Registered: 07/30/08
Posts: 44
Loc: Collingwood, Ontario, Canada
Hi Morgan,

Your derm is misinformed. Myles has LI and is 18 months. He get's itchy, so we have a vasoline with 1% cortizone in it to prevent the iching. We put it on over his creams.
He has been scratching at his back a lot as of late, but we find the cortizone helps.

We use Aveeno or Cetraben on him all day and then Eucerine over top at night time.

Hope this helps
Tara
_________________________
Tara, Rene and Myles
Myles born May 22nd 2007
Lamellar Ichthyosis

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#23485 - 12/17/08 01:29 PM Re: LI and itching [Re: TMPOL]
immystique Offline
Member

Registered: 03/09/05
Posts: 271
Loc: Grand Junction, CO, USA
Oh the poor little guy!

I have LI and when it gets really dry out (thus making my skin dry) it itches terribly! Sometimes I just wish there was a machine I could crawl into that would itch me all over all at once.

For me, it's mostly my back, my feet, and inside my ear canal. Sometimes my forearms itch, too. My feet get so bad that sometimes I inadvertently itch them until they bleed. But I still can't help it, it itches so bad sometimes!

What I do is drink more liquid(keep hydrated), and make sure my skin isn't dry. I also apply hydrocortizone ointment (ointment--not cream. Ointment has petroleum jelly in it, so it also helps moisturize, cream is more like a hand lotion!) to wherever it itches. I even use a q-tip to put a small amount in my ears when they get too bad.

Also, the Aveeno oatmeal bath can be very soothing (especially for my feet), and make sure the kids' fingernails are always trimmed so they can't scratch as deep when itching themselves.
_________________________
If the grass looks greener on the other side, maybe it's time to start watering your lawn!

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#23489 - 12/18/08 10:13 PM Re: LI and itching [Re: immystique]
brandynsmum Offline
Member

Registered: 08/24/08
Posts: 269
Loc: Connecticut
Thank you everyone! I had a very good feeling our derm was not correct but it's sort of hard to tell a doctor that if you know what I mean!

I will definitely try your suggestions and I was actually thinking about Aveeno oatmeal baths so I'm glad to know it helps smile

God I love this forum!!!!
_________________________
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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#23513 - 12/21/08 09:03 PM Re: LI and itching [Re: brandynsmum]
jds Offline
Member

Registered: 12/23/05
Posts: 432
Loc: Austin, Texas
Hi. MY son is 3 years old and has LI. In the colder weather, he pretty much scrathes constantly. Since itching causes little breaks/tears in the skin, ALL of his lotions, etc. burn terribly.

I have found that keeping the scales removed as best as possible and keeping the skin moist does help. He happens to be in this phase where he doesn't want to be lotioned. I am trying to convenience him he needs it, but that is another story all together.

Anyways, I have found that using some sort of oil (baby oil gel, almond oil, jojoba oil, etc.) really helps. We use mostly baby oil gel due to cost. I apply that all over from head to toe (it works great for loosen the scales on the head). Then, I apply shea butter as of now. It is the only thing that has yet to burn. I buy the NOW brand from Whole Foods or HEB. It is between $8 and $10 depending on where you get it.

My sitter will then put him in tight clothing such as long sleeve and long pant pjs. This really traps in the moisture. Plus, what kid doesn't love staying in pjs all day? The added plus is that you are not ruining the elastic in the everyday clothes as quickly. Though she has begun using some of those as well. Not very happy with that one, but what do you do when they take absolutely the best care possible of your kiddo. She is a blessing to our family.

Now, if I do not want to deal with the greasy mess, we use eucerine calming cream (he says it burns where he has scratched), aveeno itch relief, or gold bond with shea butter.

Gold Bond is our favorite cream thus far for anytime of the year it has real staying power. Others we like are Curel Ultra Healing and Jergans She Butter Lotion.

We have to alternaate when his skin gets use to it.

I do use sea salt and oil in the bath water to help soften the skin. Walmart now sales a tub of sea salt near the lotion that is about $5. I use at least half of the container in a tub of water. Using the whole container does work better though. We have been using skin so soft from avon in the bathwater as well. It is VERY SLIPPERY so be careful to watch the little one closely. I have slipped a couple of times even after washing out the tub.

Hope this helps in some way. Unfortunately, trail and error is something we get use to when seeking comfort for those we love.

Tammy
_________________________
Tammy (caregiver)
******************
toddler son
lamellar ichthyosis

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#23543 - 12/28/08 09:29 PM Re: LI and itching [Re: jds]
brandynsmum Offline
Member

Registered: 08/24/08
Posts: 269
Loc: Connecticut
Thanks so much everyone! I'm very happy to report that we started to use Dermaveen oatmeal bath which I assume it the same as Aveeno? and the itching has decreased dramatically. He still scratches a bit but not nearly as much smile

Tammy, the sea salt sounds great and I'll give that a try too.
_________________________
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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#23560 - 12/30/08 03:44 PM Re: LI and itching [Re: brandynsmum]
wva Offline
Member

Registered: 08/08/05
Posts: 401
Loc: Detroit, MI, USA
I am 42 with LI and it helps to remember to avoid taking Brandon out in the cold after showers and lotioning up. But, I believe you may be experiencing warm weather since you are in Australia. I believe the itching comes with the territory when it comes to having ich. In the stores recently I discovered petroleum jelly with shea butter in it. It does get messy. But, I use it over my other creams and when going out in the cold. The salt at Walmart is good to hear. Now, I can start buying it there. Using sea salt and oil in baths is a great combination. That works very nice for me, at least for a short time. I use a lot of glycerine in my moisturizers. Recently I participated in a study at Wayne State University and the free creams they gave me also had a lot of glycerine in them. But, they were more expensive than what I mix up for myself and did not work any better. I hope the itching calms soon for your little guy. Good luck and God bless!

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#23866 - 02/16/09 07:16 PM Re: LI and itching [Re: wva]
nikol62 Offline
New member

Registered: 09/21/07
Posts: 4
Loc: Chicago, IL USA
My son has CIE and used to itch a lot. After a lot of visits to the doctor, steroids (with zero effect), emergency rooms, etc... I decided to remove certain foods from his diet - orange/orange juice, kiwi, pineapple, strawberries and tomato sauce/ketchup. The improvement is unbelievable. A lot of redness is gone and itching is very manageble. I spoke to Amy Paller who is one of the leading specialists in this area of dermatology and she confirmed that it'd happened before. Usual food allergy tests do not confirm any allergies, but it is absolutely obvious that my son's skin reacts to certain high acidity and tropical fruits. I still give him small amounts of those foods from time to time and we always have some redness and increased itching afterwards. Go figure.

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#23941 - 03/07/09 10:16 PM Re: LI and itching [Re: nikol62]
brandynsmum Offline
Member

Registered: 08/24/08
Posts: 269
Loc: Connecticut
Thanks nikol62. We actually just went to see a specialist who treats skin conditions using natural products while also focusing on eliminating things that could affect Brandyn's skin in his diet. It was very interesting and he mentioned most of the foods you did. We're going to give it a try and hopefully that will help smile

He's still itching a lot but the aveeno cream helps a lot but he makes his ears bleed everyday so I'm not sure what to do about that frown His ENT has us putting a few drops of olive oil in 1-2 times per week but this seems to make it worse?? I'm going to give him a call on Monday.
_________________________
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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#23942 - 03/08/09 04:00 PM Re: LI and itching [Re: brandynsmum]
BritMum Offline
Member

Registered: 07/25/08
Posts: 226
Loc: UK
When we started using olive oil it seemed to irritate more but when we contacted the docs about it they assured us it was ok and to bare with it. We did and it's now all fine. The added irritation must been the oil loosening the build up as they had said! Every now and then we get some huge chunks out of our little girls ears!!

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#23943 - 03/08/09 09:53 PM Re: LI and itching [Re: BritMum]
brandynsmum Offline
Member

Registered: 08/24/08
Posts: 269
Loc: Connecticut
Thanks for your advice Britmum! We will keep going with it then. It must be uncomfortable to have that build up in there.
_________________________
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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#23957 - 03/10/09 12:18 PM Re: LI and itching [Re: brandynsmum]
BritMum Offline
Member

Registered: 07/25/08
Posts: 226
Loc: UK
I really feel for the little ones to have to put up with so much (and all the adults out there too!) Our little girl now seems to be getting the hang of letting us know when her ears are bugging her. She now occasionally says "bits" and come and lays her head on my lap for me to retrieve any visible clumps! I know you should never go poking around in their ears, and I don't, but at times I can see the build up and can grab it with some soft tweezers!

For her birthday she got a couple of medical kits which have kiddie tweezers in them so her dolls now get the same treatment! She'll be yelling "bits" at them, then throw them on the floor and begin jabbing the tweezers in the side of their head to get the "bits" out! I must add that I'm much more gentle than she is with her "babies"!! lol

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#23962 - 03/11/09 03:36 PM Re: LI and itching [Re: BritMum]
Ivy's Mummy Offline
Member

Registered: 10/31/08
Posts: 97
Loc: England
Last week Ivy scratched inside her ear so much it bled profusely all over her sheets, so I bought Aveeno cream and bath oil. We've noticed a lack of itching since then but on saturday morning we noticed a huge mound of puss in her ear and with it being saturday, docs shut. So we took the decision to take her to A&E. I felt such a fraud as it wasn't an emergency however the doc at the hospital was great and reassured me that for Ivy it was an emergency as she is at much greater risk. Having said that before we saw the doc I had to explain to 2 nurses what ichthyosis is and how it affects Ivy and why I was at the emergency room. (Like I said I felt such a fraud and over anxious mum!!). At nearly 6 months old she has her first skin infection, but after a course of antibiotics is clearing up nicely. Since using Aveeno she hasn't even touched her ear and it must hurt!!! Before this she wasn't itching. I think it must be because there's a build up of skin in her ear. The doc said she couldn't see her ear drum because of skin debris!!
_________________________
Emma

4 year old girl with Lamellar Ichthyosis

Baby girl unaffected

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#23963 - 03/11/09 05:31 PM Re: LI and itching [Re: Ivy's Mummy]
BritMum Offline
Member

Registered: 07/25/08
Posts: 226
Loc: UK
We had those concerns - docs not being able to see the drum clearly - but when we went to ENT and had all the tests done they assured us that due to how the skin grows in the ear canal, hearing is not automatically impaired.

Hope Ivy's on the mend! The infection could've been due to the skin being damaged during scratching as opposed to the build up in her ear, so try not to worry too much that this will reoccur!

J

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#23967 - 03/12/09 04:11 AM Re: LI and itching [Re: BritMum]
Ivy's Mummy Offline
Member

Registered: 10/31/08
Posts: 97
Loc: England
Ivy's great at the moment!!

Thanks for the reassurance, that's good to know about hearing. We're seeing dermatologist on 23rd so have made a note to ask her about ENT.

x
_________________________
Emma

4 year old girl with Lamellar Ichthyosis

Baby girl unaffected

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#23976 - 03/14/09 01:41 AM Re: LI and itching [Re: Ivy's Mummy]
brandynsmum Offline
Member

Registered: 08/24/08
Posts: 269
Loc: Connecticut
Oh poor Ivy! Glad she's ok smile We have blood on the sheets often unfortunately although the aveeno helps a lot!

When we saw the ENT, he said that you would be surprised at how much build up in the ears there can be and the person can still hear. Having said that, he also said how important it was to keep having it checked.

Britmum- LOL that is so funny! Kids are too cute smile
_________________________
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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