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#20160 - 06/08/01 03:41 PM Our experience
Sunil Offline
Junior Member

Registered: 06/08/01
Posts: 4
Loc: TX, USA
Hi Everyone,
My son was born last year and he was born
with a serious skin condition.
Although we suspected and mentioned to the
doctor that he seems to have 2-3 different
types of skin condition, we were not taken
seriously (I guess).
It is only after we gave him half a dozen chemicals (desitin, cortizones, cortico steroids and finally Ayurvedic medicine ...
All of them failed to give any permanent relief, I cannot say much about Ayurvedic
medicine because the medicine tasted so
bad that he stopped feeding and we stopped).

We then took some initiative on ourself
and we stopped his milk and started
Soy based and then to Nutraminigen and
we were able to control his allergy
part of it.

Now the remaining part was lamellar
icthyosis (as identified so far).

For his scalp we are applying Moisturex
and the benefits started coming when we
started putting diaper over his head.
This finally allowed his hair to grow.
(He had good hair when he was born which
he lost due to periodic scaling on his
head).
For the rest of the body, he itches a lot and we tried oatmeal and he had a significant
allergic reaction to it.
For now in his bath we put Olemessa bath oil,
which seems to help a bit. And we apply, Eucerin half a dozen times during the day.
We also use a medicine prescribed in India
for his icthyosis called Effaderm. We have
currently stopped this to see if this has
any effect or not. initially we did feel that
this was helpful.
Our latest method is to try applying diaper
on his head and his legs... so far good results.
On his right hand we apply red root oil (a
traditional oil usually applyed to babies).
On his left hand we are in the process of
trying Jajoba oil and a bunch of other oils
as mentioned in one of mail in the bulletin
board.
Because of his constant itching and crying
due to that he has not grown and he looks
like a 4-5 month old even though he is
about 11-12 months old now.
I do want to try some alternate medicines
for application. He peels like crazy and
we apply so many creams almost all the time.

Although they say this is hereditary, no body
in mine or my wifes family has it. And sometimes we even cling to the hope that it
is not icthyosis and it will go away one
fine day [img]http://www.ichthyosis.com/ubb/smile.gif[/img]
His blood test shows high content of Eosinophil, which I heard usually indicates
icthyosis.
So far only Diapers and to some degree Olemessa bath oil has been helpful to us.
Regards
/Sunil

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#20161 - 08/14/05 04:35 PM Re: Our experience
pbchhaya Offline
Member

Registered: 05/30/05
Posts: 5
Loc: kolkata,west bengal, india
Dear
I have grown up childrens having problem by birth. As u have mentatione in last para hereditary its all BS. Pl. try 50- 50 water & glysarin and try out this will surely help.
Pl. know one thing If God gives problem, Allmighty gives solutation too.

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#20162 - 08/15/05 03:43 AM Re: Our experience
Sunil Offline
Junior Member

Registered: 06/08/01
Posts: 4
Loc: TX, USA
Hello,
Thanks for giving us hope. We will try it. By the way, for your kids did the peeling and itching go down as they grew up?
Was it socially difficult?

We are currently trying another alternative medicine called Siddha.

Thank you for responding

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#20163 - 08/15/05 11:58 AM Re: Our experience
pbchhaya Offline
Member

Registered: 05/30/05
Posts: 5
Loc: kolkata,west bengal, india
Dear Sunil

for my daughter itching +++ high & scaling also much. Socially... yes bit diff. But teach them this is condittion & not a deasis, People may talk & pass a comment, yes sound absured. tols her when you goto cinema do you bother around? But we only see the movie. same way just contcentate on study. With god grace she is persuing B.Tech & preparing for GRE. But she was on retinoide Neotigason 25 mg. for almost 3yrs. & shown wonderful result. But this medicn was given when she was just above 13 teen yrs. of age.
But again my son who is now 13yrs. is real problem till todate. Neotigason has not given result.

I know its difficult to grow them. That too place like India & in Kolkata where socitey does not have musch awareness on this type of skin condition.

I am planing to practice AUT urine therepy apply on skin if I get +ve result I will kee you inform

Regards.

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#20164 - 08/29/05 03:45 AM Re: Our experience
sofia Offline
Member

Registered: 08/14/00
Posts: 53
Loc: Little Neck, New York , Queens
Sunil,

I read your posting. What type of ichthyosis does your son have. As for the itchiness and redness depending on the type it will subside. Some things my mother did was to bathe me every night and used a pumice stone to lightly remove the scales. She than quickly applied glycerin on me once I was removed from the bath. She would wait for it to absorb and then dress me. She also had several creams a dermatolgist made for me but they had Vit. A. not recommended for children to use. They helped but I am sure there are other things you can use to apply on your sons skin. I was just reading a post Joan posted usin Lanolin Hydrous, Glycerin and cornstarch and says that it really worked on her. Please look into the more homeopathic remedies that are more natural. Maybe you can use Shea butter to help moisturize the skin, or olive oil. If you have questions please email me.

Sofia

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#20165 - 08/31/05 01:01 AM Re: Our experience
Sunil Offline
Junior Member

Registered: 06/08/01
Posts: 4
Loc: TX, USA
Hi Sofia,
His is lamellar ichthyosis. The redness has kind of gone now (we thought it was his allergies that we were seeing he used to react to weather and sunlight) We had applied protopic prescription medicine and that really worked on the allergic reaction. The itching is still there (glad to know that it will reduce with time). We are giving him some homeopathic medicine, and also some ancient herbs & roots oil for application.
We are still working on his food allergies, we are trying accupressure on him.
Thanks for responding
Regards/Sunil

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