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#13122 - 12/01/06 03:58 AM Ich and Epilepsy?
swebblie Offline
Member

Registered: 11/08/06
Posts: 48
Loc: Wollongong, Australia
Hi, I am a new poster but have been regularly reading the board for 4 years now.

My husband and I recently found out that our son, Tobias, who has x-linked ichthyosis also has epilepsy.(He had an EEG done) At the moment his trigger is over heating or fever, He doesn't sweat properly.

The question I have is, Does anyone else have children who have Ich and epilepsy?

Also, I wanted to share with the community that we are seeing a paediatric dermatologist in Sydney at the children's hospital and she told us recently that most people/children with ichthyosis also suffer from eczema. She told us not to use sorbelene based products as they sting and to use pure paraffin wax. This does not sting (I am using it too) and works for my son and daughter (she has really bad eczema all over)

Has any one else tried paraffin wax?

Sarah

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#13123 - 12/01/06 03:31 PM Re: Ich and Epilepsy?
Ellamay Offline
Member

Registered: 10/23/06
Posts: 34
Loc: Bagshot, Surrey, England, Uk
On my 2yr old daughter we use something called epaderm its ingredients are liquid paraffin, emulsifying wax B.P and yellow soft paraffin. Not sure if this is the same thing as you are talking about but is is brilliant and stays on all day even in water!

Liz

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#13124 - 12/06/06 12:12 AM Re: Ich and Epilepsy?
swebblie Offline
Member

Registered: 11/08/06
Posts: 48
Loc: Wollongong, Australia
It sounds the same as what you are using Liz, It's called Emulsifying Ointment B.P. We mix it with warm water on our hands to make it into a cream before applying it. My son just loves that it doesn't sting and it helps with itching.

Sarah

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#13125 - 12/06/06 04:55 AM Re: Ich and Epilepsy?
Kotick Offline
Member

Registered: 01/29/06
Posts: 205
Loc: Brisbane, Australia
G'day Sarah,

I don't know much about ichthyosis and epilepsy as I haven't met anyone in the same boat.

As far as creams go I am a little suprised at the pediatric derms comment RE Sorbolene as its been my primary cream almost all my life. Maybe it used to sting when I was lil and I am now used to it.

Something she could prescribe for you is a 50/50 mix of soft white paraffin and liquid paraffin as it goes on well and moisturises the skin well. I used to use it as a kid, but its more of a winter thing because it can get hot.

Glad to see you posting

jeff

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#13126 - 12/08/06 04:33 AM Re: Ich and Epilepsy?
Francesca Offline
Member

Registered: 01/16/06
Posts: 94
Loc: Brisbane, Australia
Hi Sarah,

How great that you have found a ped derm - they are in very short supply here in Qld!
I am writing in response to your paraffin wax query - Lucia has Netherton Syndrome, a symptom of which is ichthyosis; she sheds daily, all over. I have only ever used ointments, most of which contain soft paraffin and liquid paraffin - check out all the brands recommended for ich ie. QV, AlphaKeri etc. and they will all include it in some form or another. Even Lucas Papaw which we can't live without - with NS the skin is very thin, and thus we have to watch what we put on her skin for absorption into the bloodstream - I have asked my derm many times about the impact of chemical absorption - she assures me it is safe with paraffin/petroleum products despite longterm use. Even so we obviously try and take a natural route wherever possible, but it does seem that ointments containing soft white paraffin are the most effective for her skin.The hospital make up a 75% soft white par/25% liquid par mix which we use after the morning bath. I do not use creams or lotions for the simple reason that they dry her skin more - I think it may be the emulsifiers and preservatives(?) while I know one other NS mum who swears by the QV cream.Ezcema is also a symptom of NS, but Lucia has not shown any signs as yet, while other NS children suffer badly. It seems that each case is very different.

Good luck with everything!

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#13127 - 12/12/06 11:54 PM Re: Ich and Epilepsy?
lhayes238 Offline
Member

Registered: 12/12/06
Posts: 5
Loc: hemet, california, usa
I have epidermal nevus syndrome and epilepsy. nevus is a sort of cousin to ich and comes with seizure disorders quite a bit my seizures dont seem to be triggered by anything but i did luck out and get aura seizures so i go blind and deaf before they happen which means i can get down on the floor before falling and cracking my head open, they are also grand mal seizures. if you have any questions go ahead and email me.
_________________________
BOOYAKASHA!!!

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#13128 - 01/20/07 10:27 PM Re: Ich and Epilepsy?
Kizby Offline
Junior Member

Registered: 01/20/07
Posts: 1
Loc: Idaho Falls, ID, USA
When I was younger,(MUCH younger), I was diagnosed with x-linked ich and had a problem with overheating and seizures. When the temperature outside would go up, my temperature would also increase and I would inevitably end up with a grand mal seizure. I pretty much quit having seizures before I was 5 years old. I am now 50. I did have a small bout of seizures when I was 16 but that may or may not be related to the ich. What I guess I am trying to say is that, I seemed to have grown out of it, (the seizures), so it may be possible that your child might also. Most the doctors I have gone through most my life had no idea what ichthyosis was and so I have pretty much lived with this all my life not knowing there was any help of any kind and that there were so many other people out there. Dave

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#13129 - 01/21/07 01:32 AM Re: Ich and Epilepsy?
swebblie Offline
Member

Registered: 11/08/06
Posts: 48
Loc: Wollongong, Australia
Thanks Dave for sharing your experiences, I really hope that he grows out of them too. We are still not sure of what is happening to our son, but we are about to start genetic testing so hopefully that will give us more answers. Sarah

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#13130 - 01/23/07 04:49 PM Re: Ich and Epilepsy?
swnaz Offline
Junior Member

Registered: 01/23/07
Posts: 1
Loc: Fountain Hills, AZ, USA
I also had seizures thru the late teens. I don't believe i can help much other than I outgrew the seizures.(now 45) Doctors never made a link medically. I was given EEGs, medication was ineffective etc. Many times heat and stress was involved. Once pre-seizure symptoms were recognized I was able to get to the floor before totally passing out. My parents tell me I would just flop when a child.
Best of luck!
Steve

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#13131 - 01/23/07 10:58 PM Re: Ich and Epilepsy?
swebblie Offline
Member

Registered: 11/08/06
Posts: 48
Loc: Wollongong, Australia
Thanks Steve, I am now realizing that my son isn't alone in this. He has really short seizures and I haven't seen one for a while, so maybe he is growing out of them. Thanks for telling me about this.
Sarah.

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