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#23942 - 03/08/09 08:00 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 - 03/09/09 01:53 AM Re: LI and itching [Re: BritMum]
brandynsmum Offline
Member

Registered: 08/25/08
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 04:18 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 07:36 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 09:31 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 08:11 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 05:41 AM Re: LI and itching [Re: Ivy's Mummy]
brandynsmum Offline
Member

Registered: 08/25/08
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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