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#5085 - 07/13/06 03:06 PM ASTHMA
Anonymous
Unregistered


VANESSA IS NOW 17 MONTHS OLD AND HAS BEEN IN THE HOSPITAL 4 TIMES WITH WHAT THEY SAID WAS PHEUMONIA. HER DR CALLED IN A LUNG SPEACIALIST AND WE DETERMINED IT IS ASTHMA. IT IS POSSIBLE SHE HAS IT FROM ME . I HAD IT WHEN I WAS YOUNGER BUT THEY THINK ITS MORE BECAUSE OF THE ICHTYOSIS. ASTHMA, ECZAMA AND ICHTYOSIS ARE ALL TO B RELATED TO EACH OTHER. IS ANYONE EXPERIANCING SIMILAR ISSUES?

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#5086 - 07/13/06 03:22 PM Re: ASTHMA
jds Offline
Member

Registered: 12/23/05
Posts: 432
Loc: Austin, Texas
My son hasn't been diagnosed with asthma, but I often wonder. His brother has asthma (not ichthyosis) and one of the symptoms (sp?) of an asthmatic flare up is coughing. Jared has been coughing off and on alot lately with no other symptoms. I am also curious to know if others experience the same thing.
Tammy
_________________________
Tammy (caregiver)
******************
toddler son
lamellar ichthyosis

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#5087 - 07/13/06 03:35 PM Re: ASTHMA
shandra Offline
Dakota's mom Lamellar
Member

Registered: 10/07/05
Posts: 349
Loc: Cape Coral, FL
All my children were premature, I had my oldest who is 20yrs when I was 5 months pregnant and she has asthma, my 10 yr old was born at 7 months and has asthma, and our youngest who is 10 months old and has Ichthyosis also has asthma, which they found when he came down with RSV. He also was a preemie. We were told that Ashthma goes along with Ichthyosis. Basically they said if you have Ichthyosis you will have Asthma. But I am sure there are more experienced people on the boards in regards to this.
When he needs it we hook him up to the neubulizer and put a presription medicine in it called Xopenex(spelling?) and it works great.

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#5088 - 07/13/06 04:23 PM Re: ASTHMA
Les Avakian Offline


Member

Registered: 08/13/00
Posts: 680
Loc: Fresno, Calif. USA 93705
Hello Jamie, JDS, and Shandra
At our ichthyosis conference in Atlanta, Dr. Philip Fleckman touched on the relationship of ichthyosis vulgaris, asthma, and eczema. Doctors and researchers at the University of Dundee, University of Washington, and Copenhagen did extensive research in finding these characteristics. They also found a lessened amount of an enzyme called profilaggrin in ichthyosis vulgaris people.On this board, there is the website listed for this breakthrough study.When I find it, I will email it to you.
Thanks for your post.
Sincerely,
Les
_________________________
Les Avakian

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#5089 - 07/13/06 04:29 PM Re: ASTHMA
gryphon Offline
Member

Registered: 04/12/06
Posts: 298
Loc: Alberta, Canada
My answer is "yes" as anyone with IV and eczema in my family also has asthma. The eczema abated with adulthood while the asthma (aggravated by allergies ie.pollen) persisted through adulthood.

I however have moderate IV but have no history of either asthma or eczema. So the correlation is not absolute.

Based on what I've read, my layperson's understanding of the genetics is that the connection is between the filiggrin gene responsible for ich vulgaris and a predisposition for eczema/asthma.

Here's a news article on the gene discovery made in 2006.

http://www.irishhealth.com/?level=4&id=9181

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#5090 - 07/13/06 04:41 PM Re: ASTHMA
gryphon Offline
Member

Registered: 04/12/06
Posts: 298
Loc: Alberta, Canada
Sorry Les. Saw your post after I posted, and it turns out I rehashed much of what you said. [img]http://www.ichthyosis.com/ubb/smile.gif[/img]

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#5091 - 07/13/06 04:41 PM Re: ASTHMA
Les Avakian Offline


Member

Registered: 08/13/00
Posts: 680
Loc: Fresno, Calif. USA 93705
Thanks Gryphon
I was able to also find the article in the www.medicalnewstoday.com website, March 22 issue.I think with more research we are going to find many characteristics leading to explanations linking our ichthyosis problems.Take care and thanks again.
Sincerely,
Les
_________________________
Les Avakian

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#5092 - 07/13/06 05:36 PM Re: ASTHMA
Anonymous
Unregistered


THANKS FOR EVERYONES INPUT. VANESSA IS ALSO ON XOPENEX. HER ASTHMA ONLY FLARES UP WHEN SHE GETS A COLD. HER NOSE WILL RUN ,THEN WHEN IT DRYS UP THE COUGH BEGINS. WHEN THAT COUGH STARTS, I KNOW WE ARE IN FOR IT. SHE HAS BEEN IN THE HOSPITAL 4 TIMES. IS ANYONES THAT BAD?

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#5093 - 07/13/06 08:34 PM Re: ASTHMA
gryphon Offline
Member

Registered: 04/12/06
Posts: 298
Loc: Alberta, Canada
Jamie:

Just read one of your other posts and saw that Vanessa has one of the more severe ich's likely lamellar. The research I referred to earlier made a genetic connection specifically between *ich vulgaris*, the filaggrin gene, and asthma/eczema.

Nonetheless, the 'physical' cause of asthma and eczema is that the reduced *barrier function* or abnormal permeability of IV skin allows foreign substances or allergens to enter the body through the skin. My understanding is that both asthma and eczema are the histamine reactions to these foreign substances entering the body. Lamellar, and other ich's, also has reduced barrier function so irritants could also be entering via the skin.

Asthma in my family, is simply constricted airways resulting in wheezing and difficulty breathing with no connection to colds/coughs. But it can be severe enough to require quick intervention (ie. hospital if medication is not handy). It is corrected by either using Ventolin (sp?) or Flovent inhalers depending on the severity. When allergens (ie. pollen) can be anticipated, anti-histamines like Reactine usually prevent the asthma attacks.

Interestingly in my family's experience, more frequent bathing to wash allergens off the skin (ie. after gardening or mowing the lawn, if pollen is a cause) also works very well to prevent asthma attacks. Sure you have to 'lotion-up' again, but it's worth the hassle to avoid the asthma. Depending on whether Vanessa's asthma is the result of allergens, you may want to see this technique is of benefit, if and when you identify the causes of her asthma.

[This message has been edited by gryphon (edited July 13, 2006).]

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#5094 - 07/13/06 10:13 PM Re: ASTHMA
Anonymous
Unregistered


GRYPHONE, THANKS FOR THE INFO. I NOTICED YOU SAID FLOVENT. VANESSA GETS 4 PUFFS DAILY.

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#5095 - 08/07/06 12:53 AM Re: ASTHMA
jdante Offline
Junior Member

Registered: 01/07/04
Posts: 2
Loc: toronto,ontario,canada
you should try 6 cloves of fresh garlis a a small piece of fresh genger boil together and sweeten with honey, give them 1cup in the morning and 1 cup before bed time, boil both together for 15mins strain and cool so they can drink it.fresh garlic and ginger is good for coughing. good luck
Quote:
Originally posted by jds:
My son hasn't been diagnosed with asthma, but I often wonder. His brother has asthma (not ichthyosis) and one of the symptoms (sp?) of an asthmatic flare up is coughing. Jared has been coughing off and on alot lately with no other symptoms. I am also curious to know if others experience the same thing.
Tammy

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#5096 - 08/07/06 12:59 AM Re: ASTHMA
jdante Offline
Junior Member

Registered: 01/07/04
Posts: 2
Loc: toronto,ontario,canada
you can try fresh garlic about 6 cloves ans small piece of fresh ginger boil together for 15mins and strain and sweeten with honey 1 cup in the morning and 1 cup at night.good luck.my son has lamellar ichthyosis and asthma so iknow aht your experience on cool days he will have a runny nose and that tell me that hes getting sick ,especially when the weather goes form hot to cool so sudden the cough,i give him the above tea for a few days if it doesnt clear up in a few days i use the poffers , and antibiots if need be, but these are last resort for me.
Quote:
Originally posted by gryphon:
Jamie:

Just read one of your other posts and saw that Vanessa has one of the more severe ich's likely lamellar. The research I referred to earlier made a genetic connection specifically between *ich vulgaris*, the filaggrin gene, and asthma/eczema.

Nonetheless, the 'physical' cause of asthma and eczema is that the reduced *barrier function* or abnormal permeability of IV skin allows foreign substances or allergens to enter the body through the skin. My understanding is that both asthma and eczema are the histamine reactions to these foreign substances entering the body. Lamellar, and other ich's, also has reduced barrier function so irritants could also be entering via the skin.

Asthma in my family, is simply constricted airways resulting in wheezing and difficulty breathing with no connection to colds/coughs. But it can be severe enough to require quick intervention (ie. hospital if medication is not handy). It is corrected by either using Ventolin (sp?) or Flovent inhalers depending on the severity. When allergens (ie. pollen) can be anticipated, anti-histamines like Reactine usually prevent the asthma attacks.

Interestingly in my family's experience, more frequent bathing to wash allergens off the skin (ie. after gardening or mowing the lawn, if pollen is a cause) also works very well to prevent asthma attacks. Sure you have to 'lotion-up' again, but it's worth the hassle to avoid the asthma. Depending on whether Vanessa's asthma is the result of allergens, you may want to see this technique is of benefit, if and when you identify the causes of her asthma.

[This message has been edited by gryphon (edited July 13, 2006).]

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#5097 - 08/07/06 06:27 AM Re: ASTHMA
CShell Offline
Member

Registered: 11/10/05
Posts: 1193
Loc: Fort Meade, MD
Interesting! Julia seems to breathe harder at times, not really *laboring* at breathing, but not at a normal pace. I've often wondered if she has a touch of asthma. But was always confused, b/c NS has a high rate of allergies, anyway.

I guess something to look into!
_________________________
Courtney
Mom to Julia

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#5098 - 08/07/06 11:21 AM Re: ASTHMA
jrmiss86 Offline
Member

Registered: 06/07/05
Posts: 378
Loc: Marlton, NJ, USA
My son Alex, who is 18 months also has a mild case of Asthma. We assumed that he got it from me, becasue we were told that if a child has one parent who has allergies or asthma than he has a 50% chance of haveing allergies and asthma himself. I never really thought about it being related to the icthyosis. something to think about.

Heather
_________________________
Heather
Mom to:
Alex (xli and Kallmans - 2/3/05)
Liz (3/16/07)

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#5099 - 08/07/06 05:07 PM Re: ASTHMA
gryphon Offline
Member

Registered: 04/12/06
Posts: 298
Loc: Alberta, Canada
I personally have never experienced an asthma attack or had eczema even though I would have a compromised skin barrier due to my moderate IV. Others in my family with IV have both asthma and eczema.

I think one reason that caused my better resistance to allergens is that in the first four years of my life I was exposed to the four different *unsanitized* environments. As my parents taught in remote Anglican mission/CMS schools during my infancy my immune system was exposed to really 'wild' changes. I was born in the jungles of Borneo, Malaysia while my parents taught the Dayak natives there. In my second year of life I was in the monsoon valleys of the Western Ghats in India. During my third year, they were teaching on the savanah of Uganda and after that I was in rural Canada for 2 years. During the first three years of my life I was drinking fresh *unpasteurized* cow or buffalo milk, was washing in and consuming untreated river water, well water or rain water, and was exposed to all manner of fauna and flora. I believe that as a consequence, I have a very healthy immune system that never has allergic reactions to anything and is generally resitant to bacterial infections.

My point is that my young immune system got a real work-out when I was in my earliest development. That has benefitted me in the long run as my body is able to distinguish between friend and foe. That's what a allergic histamine reaction...when your body reacts to something harmless, like pollen or nuts, as if it is being attacked by a harmful foreign substance. Having ich children, if you try to shield them too much from bacteria and allergens early on, you will be hindering the ability of their immune systems to be able to tell what is good and what is bad and thereby encumbering them in the long run. Recent research has show that the increase in allergies and even certain auto-immune diseases in the West has some connection to the overly germ-conscious, anti-bacterial society that prevails in many Western countries. Some studies have even shown that infants who grow up around dogs or farms have much stronger immune systems and less allergies.

So while you should try to prevent bacterial infections in children, don't become fanatical in cutting all exposure to germs/bacteria. A young immune system needs this exposure to strengthen itself and fine-tune its response parameters. So let them eat dirt once in a while and limit the anti-bacterial products around the house. Germs aren't always bad.


jdante:

I just googled garlic and it is indeed a natural expectorant.

I have in the past boiled black tea with ginger, coursely cracked black pepper and honey/sugar as an 'elixir' to soothe a cold. I certainly will add garlic next time.

BTW to anyone who tries the tea I mentioned, make sure you grind the pepper *coursely*...you have to be able to be strain it out before serving. It actually tastes pretty good. What the garlic will do to the flavour, I'm not sure.

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#5100 - 08/07/06 06:24 PM Re: ASTHMA
threerxli Offline
Member

Registered: 01/14/03
Posts: 515
Loc: virginia
I have asthma, and had it since birth. I am the carrier of XLI, but asthma is in my family regardless. My boys two of them have had to take medication. (not daily) My oldest when he has a lung infection/cold. That tends to aggravate it. When he was younger, especially in the spring, when allergy season hit, he would have to carry his inhailer just in case, plus take allergy meds. (he has not been on long term meds) My youngest son, he came home from the hospital with a nebulizer, but he needed it infrequently, and for the past two years, (you know I just jinxed myself right), he hasn't needed it. I have it the worst, and I am on Seravent, and a neblizer, and Zyrtec, and albuterol,daily steriods when needed. You name it, I have probably had to take it, or I am on it.
Sometimes my asthma is allergy triggered, dust, dander, mold, pets. I have to keep my bed sealed, as to not have too many dust mites. (the boys beds are that way too, just because it never occured to me to do it anyother way)No feather pillows, they keep dust and mites. Sometimes, my asthma is triggered by strong smells, like lotion with perfume, or a strong scented hairspray, new laundry detergent that has a strong perfume scent, or even a change in my shampoo! Vicks vapor rub would kill me! (crazy, but I have been living this way my whole life) Occasionally, back to the allergy thing, it is food triggered-preservatives, nuts. Last, mine is also sports triggered, but usually only if my lungs are recovering from illness or a bad allergy induced attack. Controling it for me is to try to not get sick (not easy), or stay on my allergy medication and Servent. Avoiding triggers which are trial and error.
I know servent does not have the greatest track record, but I need this medication to breath, I have no choice. So far, I feel my boys have been extremely lucky to only have the XLI and not so much the asthma. I hope (one wish from me to them) is that they never have asthma the way I have it.
I was also in the hospital when I was young, constantly for Pneumonia. The bright side is that there are so many more ways to treat asthma now, that your daughters lungs will not be damaged nearly as bad as mine were early in life. Talk to her doctor often, consult with a pulmonary dr too. Maybe an allergist. Then start weeding out different things that trigger it. (speaking of weeding, ragweed and I are not friends) (ooo, I left out strong scented candles, air freshners, and cigarette smoke).

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#5101 - 08/07/06 07:44 PM Re: ASTHMA
charmed7 Offline
Member

Registered: 03/07/04
Posts: 165
Loc: Hartford, CT
I don't have much time to read through all the posts, so if this was mentioned, sorry for the repeat. I've also made mention another post in another area. But my son at 7 has just started developing a night time cough and daily wheezing. The Dr said it was asthma and an inhaler cleared it up quick. Then I stopped the inhaler and it came back. So then I stopped milk and milk products and it's gone again without the inhaler.

You may want to do some research on milk allergies (not to be confused with lactose intolerant) for your little one. Milk is a well known trigger for asthma, I think it just depends on the person on how extreme the effect is. I just figured, I would rather take something away then give more medications. Good luck.
_________________________
I have a gifted 14 year old boy with X-Link Ichthyosis, Type I Diabetes and Bipolor Disorder.
I have a 7 year old girl who is uncanningly healthy
I have a spunky 1 year old who doesn't quite understand the word "No" yet.

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#5102 - 08/07/06 09:26 PM Re: ASTHMA
CShell Offline
Member

Registered: 11/10/05
Posts: 1193
Loc: Fort Meade, MD
Quote:
Originally posted by gryphon:
Recent research has show that the increase in allergies and even certain auto-immune diseases in the West has some connection to the overly germ-conscious, anti-bacterial society that prevails in many Western countries. Some studies have even shown that infants who grow up around dogs or farms have much stronger immune systems and less allergies.

So while you should try to prevent bacterial infections in children, don't become fanatical in cutting all exposure to germs/bacteria. A young immune system needs this exposure to strengthen itself and fine-tune its response parameters. So let them eat dirt once in a while and limit the anti-bacterial products around the house. Germs aren't always bad.


.



I agree 110% with that! Unfortunately, having trouble convincing my husband otherwise! lol His mother was (is) very germaphobic, bleaches and disinfects EVERYTHING, and some of those habits are ingrained in my husband too! lol Maybe I'll ask our ped. to give us a print out about germs or something!
_________________________
Courtney
Mom to Julia

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#5103 - 08/07/06 10:41 PM Re: ASTHMA
jrmiss86 Offline
Member

Registered: 06/07/05
Posts: 378
Loc: Marlton, NJ, USA
Quote:
Originally posted by charmed7:
I don't have much time to read through all the posts, so if this was mentioned, sorry for the repeat. I've also made mention another post in another area. But my son at 7 has just started developing a night time cough and daily wheezing. The Dr said it was asthma and an inhaler cleared it up quick. Then I stopped the inhaler and it came back. So then I stopped milk and milk products and it's gone again without the inhaler.

You may want to do some research on milk allergies (not to be confused with lactose intolerant) for your little one. Milk is a well known trigger for asthma, I think it just depends on the person on how extreme the effect is. I just figured, I would rather take something away then give more medications. Good luck.


I never thought about the milk allergy causing my sons asthma. He is allergic to milk, he can't have any dairy at all. And now that I think about it his asthma calmed down once we took him off the milk. Intresting something to talk to the allergist about this week. I always just thought he got it from me. Thanks for the info
_________________________
Heather
Mom to:
Alex (xli and Kallmans - 2/3/05)
Liz (3/16/07)

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