Lamellar ichthyosis

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Abhayskin
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by Abhayskin on Wed Sep 18, 2013 2:19 pm

Lamellar ichthyosis

Hi my son is 6 years old and is born with collodion membrane and is having lamellar ichthyosis or fish scales skin. Currently I am using QV Cream and bath lotion. Everyday I scrub his skin while giving him bath but still his skin has that odour. Can anyone suggest some good ideas.

Ichthyosis Support Group
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by Ichthyosis Support Group on Thu Sep 19, 2013 11:33 am

Re: Lamellar ichthyosis

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Ichthyosis Support Group

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Dr Mary Glover
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by Dr Mary Glover on Fri Sep 20, 2013 11:49 am

Re: Lamellar ichthyosis

Ichthyotic skin is prone to colonisation by many bacteria and yeasts, and it is these that are likely to be producing the odour that you mention. It the skin is painful or red or oozing it is important to see your doctor to have samples taken to look for infection, and to assess whether antimicrobial treatment is needed. If the problem is the odour without any sign of redness or oozing it may help to try using a bath oil and a cream for washing the skin that both contain a gentle antiseptic. These can be bought over the counter (or obtained on NHS prescription in the UK) . Sometimes bathing twice a day can be beneficial. The addition of 65 gm of hypochlorite bleach to 150 L of bath water can be helpful for individuals who suffer repeated infections.
Dr Mary Glover
Consultant Paediatric Dermatologist

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Dr Mary Judge
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by Dr Mary Judge on Fri Sep 20, 2013 6:10 pm

Re: Lamellar ichthyosis

Odour is usually a sign of germs such as Staphylococcus or fungi so skin swabs to see what's there and antiseptic wash lotion eg. Dermol 500 should help. It is more common in Bullous Ichthyosis than Lamellar. The QV should be a cream in a pump to avoid it becoming contaminated (which can happen with ointment). Go easy on the scrubbing!
Dr Mary Judge
Consultant Paediatric Dermatologist & Consultant Adult Dermatologist

girishhans
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by girishhans on Sun Sep 22, 2013 1:26 am

Re: Lamellar ichthyosis

Hello,

I'm 26 Male , India suffering from ichtyosis since birth even i got membrane on over my body but my parents used this below treatment which i still use. Now all membrane from my body had removed.So you can try it ,may be it will be helpful for you also.

Take Azadirachta indica or Neem Tree and boil it in water and wait for get warm, then take Bath of using that water and use their leaves for remove the membrane. then use Lotion of mixture of Glycerine(60%), Rose Water(20%) and Mineral Water(20%) on all over my body since birth. It gives so much moisturizer and Itching free Body.

If you need any help ,you can contact me,

Gerry

Abhayskin
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Joined: Wed Sep 18, 2013 2:07 pm
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by Abhayskin on Mon Sep 23, 2013 11:44 am

Re: Lamellar ichthyosis

My grand son since birth is having dry skin problem. Little itching. DOB07-02-2007. No scales on stomach,back,buttocks, thighs and shoulders. He has the scales on the face,legs and forearms. After the bathe twice in the morning and evening the scales disappear mostly and after sometime again the scales are seen. We found in our experience the only solution seems to be a thorough cleaning while bathing. We are regularly applying QV CREAM for moisturising purpose. My grandson is ABHAY and they are in Singapore. HE IS otherwise normal ,intelligent,playful,participates in all extracurricular activities namely learning Guitar,vocal music, taiquendo ,school dramas etc.

He gets tired when it is hot, when he goes directly or indirectly under the sun. He always carry water and when he starts sweating he sprays water on his face and neck. After sometime he is better. He gets exhausted when hot.

During winter even after applying QV cream several times his skin crackles and ichthiness is high during winter. He scratches and blood comes out. His face will be so tight that he can't eat for some days as he opens his mouth very little . Any remedies for this.

Thanks.

Abhayskin
Posts: 5
Joined: Wed Sep 18, 2013 2:07 pm
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by Abhayskin on Mon Sep 23, 2013 11:52 am

Re: Lamellar ichthyosis

girishhans wrote:Hello,

I'm 26 Male , India suffering from ichtyosis since birth even i got membrane on over my body but my parents used this below treatment which i still use. Now all membrane from my body had removed.So you can try it ,may be it will be helpful for you also.

Take Azadirachta indica or Neem Tree and boil it in water and wait for get warm, then take Bath of using that water and use their leaves for remove the membrane. then use Lotion of mixture of Glycerine(60%), Rose Water(20%) and Mineral Water(20%) on all over my body since birth. It gives so much moisturizer and Itching free Body.

If you need any help ,you can contact me,

Gerry
I also use neem leaves boiled water for my skin. It does help a little bit but not to a full extent. Thanks for suggesting other methods. I will surely try.

Abhayskin
Posts: 5
Joined: Wed Sep 18, 2013 2:07 pm
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by Abhayskin on Mon Sep 23, 2013 11:55 am

Re: Lamellar ichthyosis

Dr Mary Judge wrote:Odour is usually a sign of germs such as Staphylococcus or fungi so skin swabs to see what's there and antiseptic wash lotion eg. Dermol 500 should help. It is more common in Bullous Ichthyosis than Lamellar. The QV should be a cream in a pump to avoid it becoming contaminated (which can happen with ointment). Go easy on the scrubbing!

Thanks Dr. Mary.

I will surely try the antiseptic wash.

Thanks,
Abhay mother.

Abhayskin
Posts: 5
Joined: Wed Sep 18, 2013 2:07 pm
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by Abhayskin on Mon Sep 23, 2013 11:58 am

Re: Lamellar ichthyosis

Dr Mary Glover wrote:Ichthyotic skin is prone to colonisation by many bacteria and yeasts, and it is these that are likely to be producing the odour that you mention. It the skin is painful or red or oozing it is important to see your doctor to have samples taken to look for infection, and to assess whether antimicrobial treatment is needed. If the problem is the odour without any sign of redness or oozing it may help to try using a bath oil and a cream for washing the skin that both contain a gentle antiseptic. These can be bought over the counter (or obtained on NHS prescription in the UK) . Sometimes bathing twice a day can be beneficial. The addition of 65 gm of hypochlorite bleach to 150 L of bath water can be helpful for individuals who suffer repeated infections.
Thanks Dr Mary,

I will contact my doctor in Singapore and start using antiseptic. Here doctors say he is not having any infection.

Thanks once again,
Abhay mother.

Om's Mum
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Joined: Tue Sep 24, 2013 2:09 pm
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by Om's Mum on Tue Sep 24, 2013 2:28 pm

Re: Lamellar ichthyosis

Hi all,

My son , Om is 11 months old and has been diagnosed with Lamellar Icthyosis or ARCI. We manage his condition well and apart from the visible difference between him and other children, he is a happy, tenacious, vibrant young boy.

We are anxious to have more children so have been referred to a geneticist to determine which of our genes are affected. This in theory seemed like a straight forward process. The problem we have encountered is that when it comes taking blood from my son it is extremely difficult. We have been to the hospital on numerous occasions without anyone being able to get a sample. It's very traumatic for Om to be held down and be poked in his arms and heels to no avail.

Apart from his groin area and the backs of his knees, the scales and dark patches cover his whole body.

Can anyone suggest where they might be able to draw a sample, whilst causing minimal discomfort and probing?

Is there anything we can do to try and minimise the scale in a particular area for some time prior to an appointment and thus aid a successful blood draw?

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