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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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#13132 - 02/10/07 12:35 PM Re: Ich and Epilepsy?
mymegan Offline
Junior Member

Registered: 02/10/07
Posts: 4
Loc: Pleasant Grove, UT, USA
My daughter has lameller ichthyosis. She is four and a half years old. about a year ago, she had a couple of seizures, ambulanced to the hospital, nothing prior to that, nor since. Certainly don't seem to qualify as the recurance associated with epilepsy, but definitely enough to make me tremble at the thought of it happening again. She is my little girl, strong and brilliant. Horrifying whenever any new obstacle presents itself which we are not able to fully control. Let me know of any new discoveries.

Thank you

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#13133 - 02/11/07 04:34 AM Re: Ich and Epilepsy?
threerxli Offline
Member

Registered: 01/14/03
Posts: 515
Loc: virginia
I found this article on the Emedicine website, its easier to access ifyou type in emedicine and then RUD in your search bar, rather than registering with the site. KALLMANS at the ame site might also interest you. This and Kallmans is linked to XLI. You can have RUD and KALLMANS without having X linked ichthyosis, however it mainly occurs together. I think from the research I have been readng about, that there are so many variations of the "X" chromosome, that XLI can sometimes (and rarely) produce additional symptoms. Most men and boys that have XLI only have dry skin and no other symptoms.
Background: Rud syndrome, previously considered a rare recessive disorder marked by ichthyosis, hypogonadism, mental retardation, epilepsy, and dwarfism, is now classified as an ichthyosis. The contemporary ichthyosis classification reassigns it as a neuroichthyosis with cutaneous findings most similar to those observed in X-linked recessive ichthyosis, rather than a distinct clinical entity. Although ichthyosis and hypogonadism are the predominant features, neurologic deficits vary, suggesting genetic heterogeneity.


Pathophysiology: The pathophysiology of Rud syndrome is unknown. Defects in steroid sulfatase and Kallman loci on the X chromosome have been identified; however, these defects were not tested in most of the earlier cases. Cases suggestive of an autosomal recessive inheritance pattern have also been reported.


Frequency:


Internationally: The prevalence is rare worldwide.
Mortality/Morbidity: Mortality and morbidity depend on the presence and the severity of associated findings.

Race: No racial predilection is known.

Sex: Cases in which steroid sulfatase deficiency has been identified involved boys; however, overall, no male predilection is apparent, as anticipated by an X-linked recessive genodermatosis. This observation could be explained by the fact that a defect in an autosomal recessive gene may also be present (some cases suggestive of this inheritance pattern have been reported) or that such heterogeneity of clinical and genetic findings exists and some patients who are thought to have Rud syndrome really have different disorders manifesting with clinical changes similar to those of Rud syndrome.

Age: The disease manifests with clinical signs and symptoms at birth or shortly thereafter.

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#13134 - 02/12/07 12:40 AM Re: Ich and Epilepsy?
swebblie Offline
Member

Registered: 11/08/06
Posts: 48
Loc: Wollongong, Australia
Thanks threexli,
Thanks for looking up the information for me, you are so helpful and I know I can always trust your research. I have read the mentioned article on emedicine and quite a lot of others when I searched for epilepsy and dry skin.
I found that trick too, using Google to search instead of joining the site. I wonder why they bother with asking you to join their site as you can do a search at their site to find the articles and then copy and paste into Google which will then find the article for you.
I guess they are trying to make money...

Anyway sorry for rambling.
Sarah.

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#13135 - 02/12/07 02:52 AM Re: Ich and Epilepsy?
threerxli Offline
Member

Registered: 01/14/03
Posts: 515
Loc: virginia
Well, honestly, I used to have all of this stuff memorized..but now it feels scrammbled. Maybe just too much information is jumbled in my head, so now I try to just Quote everything so I dont get it wrong. The problem with XLI, is that for the most part its only dry skin. But because of where the chromosome is broken, the material on either side can be affected and cause additional problems. Jordan had an abnormal EEG, it was sleep deprived, but they determined it was not seizures. We had this done about 4 years ago when he was 8 or nine. Dont we all wish we could just get the answers so much faster? I remember all the testing we did, and all of the doctors I saw, just sent us in circles. Even though I know more about what could be affecting my son LOL , theres not much we can do, other than what we were already doing. I hope your search discovers more, and then you can post what they find. I need to know LOL..

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