Our Family
~Not too much, but a little about my family~
Sunday, March 1, 2015
Sunday, January 25, 2015
I've tried many things
I've read about the filligrin gene mutation and am about ready to believe that this might be it. Then I start all over again and try a whole new set of remedies.
I know I'm forgetting other remedies I've tried. Most diets have been tried for 3 months.
I haven't stayed with any one thing because the skin won't clear and their itching is insane.
Currently, the boys are gluten and wheat free, and dairy free. I'm afraid of using cinnamon, high fructose corn syrup, GMO sugar or regular beet sugar. Tons of other preservatives, and anything with corn in it even though I love tortillas. Gmo free food is expensive so I try to just stick to rice and meat. And gosh, we can't always eat organic meat and eggs.
I'm also beginning to think it might be Chase's liver not functioning properly.
If anyone has something that might help the situation, let me know.
I spend a lot of time thinking on my own because I can't really talk to people about these things. Most people are conventional with their beliefs and they believe in doctors. I do not.
I birthed Hudson in a home setting and he received no interventions or immunizations until many months later and he has no skin issues.
Hunter was born in hospital and had immunizations at birth and suffered some eczema.
Summer was born unassisted at home with my husband and she has no eczema.
Chase and Chance were both born in hospital and both were given immunizations right after birth and they both suffer severe eczema. I feel there is a connection.
Chance hasnt had any immunizations after his birth day immunizations because I've mostly stayed out of the doctor.
After some urging from my husband for me to bring Chase to the doctor, I came home with two prescriptions, protopic and clobetasol. I used these on him for a little over a year on and off. Everytime I stopped at 7 days, rashes would appear again more than before. Soon , creams didnt really help and I started to fear putting them on him.
I tried milk thistle a long time ago,..even before we were ever prescribed topical steroid cream. I'm ready to try it again.
http://www.progressivehealth.com/using-milk-thistle-for-eczema.htm
I purchased herbs from here after a consultation:
http://www.drshen.com/consultation.html
I've tried the GAPS diet and purchased the book
http://gapsdiet.com/
We tried the Eczema Diet and purchased that book and scoured the earth for all these supplements
Glysine, and liquid Vitamin B-6, papaya, and Quercetin and many others listed in the book.
http://eczemadiet.com.au/
We use Blue Tansy, Vetiver, Lavender, Roman Chamomile and so many other essential oils to calm the itching and MY nerves especially at night. We use young living and doterra.
All the butters. mango butter, coconut butter. shea butter, olive oil, avocado butter. Emu Oil.
Then we've used regular Aquaphor, and (heaven forbid, toxic) Vaseline. All of these pretty much sting.
The white creams are even worse. Vanicream, Vaniply, Eucerin, Cerave. All no good.
We have No rugs, no pets, no harsh cleaners. We use grapefruit seed extract to clean. We use vinegar to clean and essential oils to clean.
I do laundry with Charlie's, or Cal Bens soap. We never use fabric softener anymore. Its been years. If I needed it with my crunchy diapers, I used Ecover.
I give them fermented cod liver oil, and a calcium and magnesium liquid supplement since they don't eat dairy.
I've eliminated wheat countless of times..3 weeks to 3 months at a time with no better results.
They take the probiotic Biokult.
I've brought them to an acupuncturist who practiced kinesiology on them.
I brought them to a Chinese doctor in Charlotte who told me they were Atopic and chronic and that I should massage them. He said my and my husband's Qi was unhealthy at the time of conception.
I've used the Merry Li Clinic liquid supplement that is a bunch of herbs:
honeysuckle flower, forsythia fruit, rehmannia root, sophora root, dittany root bark, atractylodes root, poria sclerotium
and the same company's spray
http://www.merryclinic.com/eczema/treatment_eczema_childrens.htm
Oh and I've tried Dead Sea Salts from a reputable company
and seaweed from a company in Ireland shipped all the way from Ireland.
Then easy Epsom Salt baths and baking soda baths.
My latest venture is into Mezerium and Arsenicum Album listed in the Materia Medica.
ordered these pellets from
http://www.elixirs.com/remedy.htm
http://www.vithoulkas.com/en/books-study/2700-mezereum.html
I've also used bentonite clay and have thrown it in the bath and made a paste to smear on Chase's face.
I used Flanders Buttocks Ointment and this cleared up Chase's oozing face considerably. This was one of the only things that shrunk the open red ooze skin on Chase's face.
They chew evening primrose oil gelcaps.
I was very excited after finding this page from Weston A. Price
http://www.westonaprice.org/holistic-healthcare/treating-eczema/
My two little boys wear a lot of hanna andersson clothes which are really expensive but organic so I feel the need to purchase them, new or second hand.
No one in my house smokes. I have looked at all our practices and I can't see what else could be wrong.
Theres also no cockaroaches. I wish I didn't have to even type that, but I think some people may think that about my crazy 5 children home. But there really are none. Apparently when a home is infested with these pests, children can develop eczema.
I also have crystals that have properties that deal with skin. The boys wore green aventurine crystals around their necks for quite some time and a loose one that Chase likes to sleep with. We have many stones that are said to absorb toxicity from the body.
Also, throughout this entire journey, I also try to practice optimism and I believe in the Law of Attraction, although not easy when you have sick children or even when you yourself are sick.
I know I'm forgetting other remedies I've tried. Most diets have been tried for 3 months.
I haven't stayed with any one thing because the skin won't clear and their itching is insane.
Currently, the boys are gluten and wheat free, and dairy free. I'm afraid of using cinnamon, high fructose corn syrup, GMO sugar or regular beet sugar. Tons of other preservatives, and anything with corn in it even though I love tortillas. Gmo free food is expensive so I try to just stick to rice and meat. And gosh, we can't always eat organic meat and eggs.
I'm also beginning to think it might be Chase's liver not functioning properly.
If anyone has something that might help the situation, let me know.
I spend a lot of time thinking on my own because I can't really talk to people about these things. Most people are conventional with their beliefs and they believe in doctors. I do not.
I birthed Hudson in a home setting and he received no interventions or immunizations until many months later and he has no skin issues.
Hunter was born in hospital and had immunizations at birth and suffered some eczema.
Summer was born unassisted at home with my husband and she has no eczema.
Chase and Chance were both born in hospital and both were given immunizations right after birth and they both suffer severe eczema. I feel there is a connection.
Chance hasnt had any immunizations after his birth day immunizations because I've mostly stayed out of the doctor.
After some urging from my husband for me to bring Chase to the doctor, I came home with two prescriptions, protopic and clobetasol. I used these on him for a little over a year on and off. Everytime I stopped at 7 days, rashes would appear again more than before. Soon , creams didnt really help and I started to fear putting them on him.
I tried milk thistle a long time ago,..even before we were ever prescribed topical steroid cream. I'm ready to try it again.
http://www.progressivehealth.com/using-milk-thistle-for-eczema.htm
I purchased herbs from here after a consultation:
http://www.drshen.com/consultation.html
I've tried the GAPS diet and purchased the book
http://gapsdiet.com/
We tried the Eczema Diet and purchased that book and scoured the earth for all these supplements
Glysine, and liquid Vitamin B-6, papaya, and Quercetin and many others listed in the book.
http://eczemadiet.com.au/
We use Blue Tansy, Vetiver, Lavender, Roman Chamomile and so many other essential oils to calm the itching and MY nerves especially at night. We use young living and doterra.
All the butters. mango butter, coconut butter. shea butter, olive oil, avocado butter. Emu Oil.
Then we've used regular Aquaphor, and (heaven forbid, toxic) Vaseline. All of these pretty much sting.
The white creams are even worse. Vanicream, Vaniply, Eucerin, Cerave. All no good.
We have No rugs, no pets, no harsh cleaners. We use grapefruit seed extract to clean. We use vinegar to clean and essential oils to clean.
I do laundry with Charlie's, or Cal Bens soap. We never use fabric softener anymore. Its been years. If I needed it with my crunchy diapers, I used Ecover.
I give them fermented cod liver oil, and a calcium and magnesium liquid supplement since they don't eat dairy.
I've eliminated wheat countless of times..3 weeks to 3 months at a time with no better results.
They take the probiotic Biokult.
I've brought them to an acupuncturist who practiced kinesiology on them.
I brought them to a Chinese doctor in Charlotte who told me they were Atopic and chronic and that I should massage them. He said my and my husband's Qi was unhealthy at the time of conception.
I've used the Merry Li Clinic liquid supplement that is a bunch of herbs:
honeysuckle flower, forsythia fruit, rehmannia root, sophora root, dittany root bark, atractylodes root, poria sclerotium
and the same company's spray
http://www.merryclinic.com/eczema/treatment_eczema_childrens.htm
Oh and I've tried Dead Sea Salts from a reputable company
and seaweed from a company in Ireland shipped all the way from Ireland.
Then easy Epsom Salt baths and baking soda baths.
My latest venture is into Mezerium and Arsenicum Album listed in the Materia Medica.
ordered these pellets from
http://www.elixirs.com/remedy.htm
http://www.vithoulkas.com/en/books-study/2700-mezereum.html
I've also used bentonite clay and have thrown it in the bath and made a paste to smear on Chase's face.
I used Flanders Buttocks Ointment and this cleared up Chase's oozing face considerably. This was one of the only things that shrunk the open red ooze skin on Chase's face.
They chew evening primrose oil gelcaps.
I was very excited after finding this page from Weston A. Price
http://www.westonaprice.org/holistic-healthcare/treating-eczema/
My two little boys wear a lot of hanna andersson clothes which are really expensive but organic so I feel the need to purchase them, new or second hand.
No one in my house smokes. I have looked at all our practices and I can't see what else could be wrong.
Theres also no cockaroaches. I wish I didn't have to even type that, but I think some people may think that about my crazy 5 children home. But there really are none. Apparently when a home is infested with these pests, children can develop eczema.
I also have crystals that have properties that deal with skin. The boys wore green aventurine crystals around their necks for quite some time and a loose one that Chase likes to sleep with. We have many stones that are said to absorb toxicity from the body.
Also, throughout this entire journey, I also try to practice optimism and I believe in the Law of Attraction, although not easy when you have sick children or even when you yourself are sick.
Friday, November 14, 2014
Some info about topical steroid withdrawal
this video shows what Chase and Chance went through:
https://www.youtube.com/watch?v=ifKoHdIt22Y
Other blogs like mine:
http://warriorgirlbeatstopicalsteroid.blogspot.com/2014/05/warrior-girl-having-fun-in-sun.html
http://misskittydefeatseczema.blogspot.com/
http://klinestopicalsteroidhell.blogspot.com/
http://mylittleredwarrior.wordpress.com/
https://www.youtube.com/watch?v=ifKoHdIt22Y
Other blogs like mine:
http://warriorgirlbeatstopicalsteroid.blogspot.com/2014/05/warrior-girl-having-fun-in-sun.html
http://misskittydefeatseczema.blogspot.com/
http://klinestopicalsteroidhell.blogspot.com/
http://mylittleredwarrior.wordpress.com/
Friday, September 12, 2014
This is Chase today Sept.12, 2014
I really hope one day he will heal. The nights are still unbearable and the boys still scream if I attempt to put anything on their skin. I know that if they were older, they would be a little more reasonable, but I also know that their skin hurts. The last thing I tried to try to help clean Chase's face was saline solution. He screamed loud enough that I was surprised the neighbors didn't knock on our door. Normally, I just leave him looking this way, with scabs and yellow ooze, because it just comes right back.
About two weeks ago I tried pure Irish seaweed. Chase didn't think the brownish greenish bathwater would be soothing. He screamed before he even entered the water. I got him in it for about 5 minutes, but I won't be attempting that again for a month if not longer.
I really hope one day he will heal. The nights are still unbearable and the boys still scream if I attempt to put anything on their skin. I know that if they were older, they would be a little more reasonable, but I also know that their skin hurts. The last thing I tried to try to help clean Chase's face was saline solution. He screamed loud enough that I was surprised the neighbors didn't knock on our door. Normally, I just leave him looking this way, with scabs and yellow ooze, because it just comes right back.
About two weeks ago I tried pure Irish seaweed. Chase didn't think the brownish greenish bathwater would be soothing. He screamed before he even entered the water. I got him in it for about 5 minutes, but I won't be attempting that again for a month if not longer.
Tuesday, August 19, 2014
This is how he spends most of his days and nights- playing games on the ipad.
Someone on ITSAN mentioned these Chattanooga ice packs. I looked them up and bought a few on Amazon. One medium sized one fits perfectly on his legs.
He doesn't look so bad in this pic, because I had slathered Vaniply over his face and it loosened up crusts. I caught him before he started to ooze. |
His 5th birthday party early this month. |
Chance, my 2 yr old, likes the bandages. I usually put them on after a scratch fest and it calms him. |
Chase's feet for the last month- weirdly the toes are unaffected |
Chance's feet- his toes are affected |
Thursday, July 10, 2014
More pics of the kids today
we are trying to truck along and I want to take as many pics as possible because I want to look back someday and see how far we've come...
Chase has crusted ooze and raw cheeks, chin, upper lip and I guess pretty much whole face. I am very nervous putting this out there for all to see. But if it weren't for itsan folks, I wouldn't do it. I've seen others blogs and this is what prompted me to do this. I may not accept comments though, because I don't want to read about what I am not doing right by someone who does not understand exactly what I'm going through.
In these pics, the two yr old has a puffy face. His face is normally more slender and he's got eyelids..not like in these pics. The girl is my only daughter who has perfect skin. Thank God! Really, I feel heart palpitations as I write this. Its hard to look at these pics..even for me and I see him all day.
Chase has crusted ooze and raw cheeks, chin, upper lip and I guess pretty much whole face. I am very nervous putting this out there for all to see. But if it weren't for itsan folks, I wouldn't do it. I've seen others blogs and this is what prompted me to do this. I may not accept comments though, because I don't want to read about what I am not doing right by someone who does not understand exactly what I'm going through.
In these pics, the two yr old has a puffy face. His face is normally more slender and he's got eyelids..not like in these pics. The girl is my only daughter who has perfect skin. Thank God! Really, I feel heart palpitations as I write this. Its hard to look at these pics..even for me and I see him all day.
Wednesday, July 9, 2014
We were up watching Netflix in the middle of the night because of the scratching. Chance could not stop and was drawing blood. I keep checking his fingernails for fungus. Chase woke up an hour later and so I fell asleep sitting up on couch with the two kids slumped over beside me on the couch. Its almost night again and I hope to sleep a little bit better tonight. We will see.
I'm really beginning to realize that Chase's face skin is super thin. It crusts over...forms thin scabs and then at night he fiercely rubs his face on the sheets and everything comes off and he wakes up to a glossy, ooze covered raw face.
Itsan forums have helped me so much in dealing with this. I felt so alone and guilty for staying home so much. Now I'm trying to deal with things day by day and not try to wait for this to pass too quickly. I want it to, but I have to remember, so I won't get disappointed.
I'm really beginning to realize that Chase's face skin is super thin. It crusts over...forms thin scabs and then at night he fiercely rubs his face on the sheets and everything comes off and he wakes up to a glossy, ooze covered raw face.
Itsan forums have helped me so much in dealing with this. I felt so alone and guilty for staying home so much. Now I'm trying to deal with things day by day and not try to wait for this to pass too quickly. I want it to, but I have to remember, so I won't get disappointed.
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