Re: Fair complexion - Question on Angioedema

[Guest guest]

Hi Irene

I have had swelling on my face usually on one side from the cheek to the lips.

My lips swell really big and it looks gross. when my face swells then I get a

hive around the swelling. ( a big red circle). Does she get that? I take benedryl

all day until it goes down. Sometimes it can take up to 15 hours when its a

bad one.

I hope this answers your question.

Sandy PS I am also very fair

[Guest guest]

Sandy,

Thanks for your response. My daughter, , is only ten years old (almost 11) and has had hives most of her life....The hives were treated with benedryl until last year, when the doctor put her on Zyrtec everyday. It seemed to help a little, but the hives & the itchies were a constant part of life in our household anyway. Anyway, the angioedema started over a year ago, but got significantly worse in January of this year. It doesn't just affect one side of her face, but her whole face - like a big, red swollen mask - and her lips do swell. It's really startling, to say the least, though I try to make it "not a big deal" because I don't want to scare her.

(The first time it happened, her eyes swelled shut, so it was hard to say it wasn't a big deal! Like you, she says it looks gross and she is really embarrassed by it. She does get what looks like a hive, although an atypical one because of it's size - around the whole thing! The first time it happened, it lasted for eight long days and nights (even though the doc put her on Prednazone). She fell about three weeks ago & had significant angioedema from her hands to her elbows...Well, she woke up on Tuesday & the Red Mask was back....along with hives on her arms. She was on four days of Prednazone which brought down the symptoms, but on her first day off of it the swelling & redness came back. She also has hyroglyphic skin, so her skin constantly has the wheal marks.

I took her back to the doctor & he's running blood work, but really is clueless about why this is happening. He keeps telling me that there isn't a known cause for hives in 70% of the cases & that we'll just treat as we go, but I'm at the end of my rope looking for an answer. He changed her meds to Allegra & if that doesn't work, he gave me a script for aterax. I've read the text books to get better informed ( & Noble love me!), but that only give certain information. I've got medical folks in my family & they are equally as stumped. I don't know anyone at all who has ever had a hive on their whole face and I'm not buying the "live with it" scenario. (My other kids have cardiac/neurological issues that have been easier to deal with than this!) That's why I've turn to the web...I figure that the folks who live with this have got to be smarter than the doctor who doesn't! She has another appointment with the allergist, but I'm not hopeful that he'll telll me anything different.

If you or anyone else has either info or can think of questions that I should ask the doctors, I'm making a list! Really appreciate any ideas.

In all of this, we are trying to keep a sense of optimism & humor in our household, but it's getting harder & harder.

Irene

[Guest guest]

!

I know it's not to you, but it certainly is a relief to me that somebody has something so similar to my daughter's condition & is still writing to tell about it! What do you do to alleviate the symptoms? How often do you experience these episodes? Has it gotten worse or better over time (how long in between episodes - how long do they last?) Did you have it as a child?

(My daughter is not quite eleven). Question (Guys might not want to read this one) - but is it at all related to female hormone cycle? (She may not be eleven yet, but she is very tall & physically maturing, so I thought maybe this new on-slaught (advancing from hives to angioedema) might be somehow tied into the hormonal changes).

Irene

[Guest guest]

Only once did my swelling affect my whole face, but that seemed to

stem from a reaction to asprin.

> My daughter has honey blond hair, blue eyes & has an extremely fair

> complexion - makes the hives easy to identify! (My other kids are

darker &

> don't have this!)

>

> Question - Is there anyone out there who has had episodes of

angioedema that

> affects their whole face? (We've gone from chronic hives to

increasing &

> unpredictable episodes of angioedema of the face & hands).

>

> Irene

[Guest guest]

Hi Irene - whenever I have a bad attack the angio is all over my entire head front to back, eyes and ears included, as well as the rest of my body. I know things can only get better when I have no white patches left to turn red and swollen, and from there it usually takes three days or so to clear completely. Nightmare. Otherwise, it's just normal hives on my face, sometimes all over, sometimes not, but they look different and are better behaved. After angio hives I've often bruised myself because it's beyond just scratching, but the regular ones I just scratch to bits and curse a lot! Such a pleasant condition to have isn't it!!

Fair complexion - Question on Angioedema

My daughter has honey blond hair, blue eyes & has an extremely fair complexion - makes the hives easy to identify! (My other kids are darker & don't have this!) Question - Is there anyone out there who has had episodes of angioedema that affects their whole face? (We've gone from chronic hives to increasing & unpredictable episodes of angioedema of the face & hands). Irene ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~If you do wish to unsubscribe then you can click on the following link: <mailto:urticaria-unsubscribeegroups>~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~This list is in the service of those who suffer from Chronic Urticaria (hives). We strive to support and lift each other as a worldwide cyber-family. We share whatever needs to be shared to help one another in our struggle with Chronic Urticria. Any posting that is off the main topic of Chronic Urticaria, we post with a prefix of NCU -. This is done out of respect for those who do not wish to read such postings.

[Guest guest]

Hi Irene,

My daughter is 11. She will be 12 in a couple of months. When la started breaking out with hives over a year ago I didn't think much about it because she had had hives several times in the past ever since she was a toddler. Normally they would give her predisone and within a week they would go away and not return for several months sometimes even a year. The difference this time was that it was a different time of the year when it started and the predisone didn't work. After going through a lot of tests and questions, all indicating that la was healthy, no allergies and no stress, I wondered about the hormone situation also. la hasn't started her mens. yet but she has been developing in other ways this last year. The doctors assured me this had nothing to do with hormones. I still wonder. Everyday she doesn't take her meds (20mg Zyrtec/150mg Zantac) she breaks out bad. She even breaks out while she is taking her meds but she can tolerate it then. I guess like everyone here I get frustrated with not knowing the reason WHY. I hope your child gets some relief someday soon.

la is also blonde haired and blue eyed with a fair complexion.

Best Wishes,

Donna (Richmond,IN)

[Guest guest]

Hi Irene,

My daughter is 11. She will be 12 in a couple of months. When la started breaking out with hives over a year ago I didn't think much about it because she had had hives several times in the past ever since she was a toddler. Normally they would give her predisone and within a week they would go away and not return for several months sometimes even a year. The difference this time was that it was a different time of the year when it started and the predisone didn't work. After going through a lot of tests and questions, all indicating that la was healthy, no allergies and no stress, I wondered about the hormone situation also. la hasn't started her mens. yet but she has been developing in other ways this last year. The doctors assured me this had nothing to do with hormones. I still wonder. Everyday she doesn't take her meds (20mg Zyrtec/150mg Zantac) she breaks out bad. She even breaks out while she is taking her meds but she can tolerate it then. I guess like everyone here I get frustrated with not knowing the reason WHY. I hope your child gets some relief someday soon.

la is also blonde haired and blue eyed with a fair complexion.

Best Wishes,

Donna (Richmond,IN)

[Guest guest]

Hi Irene,

My daughter is 11. She will be 12 in a couple of months. When la started breaking out with hives over a year ago I didn't think much about it because she had had hives several times in the past ever since she was a toddler. Normally they would give her predisone and within a week they would go away and not return for several months sometimes even a year. The difference this time was that it was a different time of the year when it started and the predisone didn't work. After going through a lot of tests and questions, all indicating that la was healthy, no allergies and no stress, I wondered about the hormone situation also. la hasn't started her mens. yet but she has been developing in other ways this last year. The doctors assured me this had nothing to do with hormones. I still wonder. Everyday she doesn't take her meds (20mg Zyrtec/150mg Zantac) she breaks out bad. She even breaks out while she is taking her meds but she can tolerate it then. I guess like everyone here I get frustrated with not knowing the reason WHY. I hope your child gets some relief someday soon.

la is also blonde haired and blue eyed with a fair complexion.

Best Wishes,

Donna (Richmond,IN)

[Guest guest]

Hi Irene,

I'm so sorry to hear that your daughter is suffering like this. It's a scary thing to happen, especially when you're so young. I think we all agree here that it's one thing having this as an adult, but when it happens to children it's terribly cruel.

To answer your questions, I've had chronic urticaria for about eight years now. I never had it as a kid, although I couldn't say that whatever triggered it wasn't in my system when I was younger - that's something I'm trying to find out. When it comes to alleviating the symptoms of a bad angio attack, I'm afraid I can't seem to do much - I just tend to ride it out in bed or walk around in a bathrobe most of the time and keep a beady eye on impending anaphylaxsis, which does seem to accompany it in my own case. I did used to take showers with water that matched the temperature of my skin - anything hotter or colder and it went even more bananas - and it did help for a while but the skin can get pretty hot with angio so it wasn't a sensible long-term solution! I don't take prednisolone any more, although I've got bottles of the stuff downstairs. It didn't help with the itching and it couldn't stop the attacks coming, or do anything significant for the swelling. I don't have the angio episodes anymore too much these days, thank goodness, but I'm taking a lot of drugs (2 zyrtec, 4 zantac, 8 nalcrom, plus inhaler and epipen, rarely) so even though they don't stop it by any means, perhaps do stop it taking root more often to some extent. I can often stop the straight hives coming with the drugs, and even something as simple as going to the toilet can put an end to a hive attack, but angio - never. That'll always come if it wants to. Actually, I only ever seem to get the angio attacks these days when I have my period or a bad cold/infection of some kind, and they will usually last for as long as my period (or infection) does. With my period this can often be ten days, so I get the three day non-stop-can't-do-anything-about-it to start with, and then recurring attacks until I've stopped bleeding. I've also had five (poss 6) miscarriages, and without exception I've had dreadful angio with each of these, including fever and what seems like a permanent film of something slimy covering my skin. Definately not sweat - maybe leaking histamine or something! Sinus trouble is another one which always seems to invite angio along for the ride. I'm looking into all of these things. Also with the angio I get the 'hard' raised patches which are particularly irritating on the face, because they itch like you-know-what and hurt and sting like you-know-what, so you scratch them and they hurt, and you don't scratch and they hurt anyway!!! AAAARGH!

What's your daughter's doctor's take on everything she's going through right now? Has she been put on any medication, and have they run any tests yet?

Scotland

Re: Fair complexion - Question on Angioedema

! I know it's not to you, but it certainly is a relief to me that somebody has something so similar to my daughter's condition & is still writing to tell about it! What do you do to alleviate the symptoms? How often do you experience these episodes? Has it gotten worse or better over time (how long in between episodes - how long do they last?) Did you have it as a child? (My daughter is not quite eleven). Question (Guys might not want to read this one) - but is it at all related to female hormone cycle? (She may not be eleven yet, but she is very tall & physically maturing, so I thought maybe this new on-slaught (advancing from hives to angioedema) might be somehow tied into the hormonal changes). Irene ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~If you do wish to unsubscribe then you can click on the following link: <mailto:urticaria-unsubscribeegroups>~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~This list is in the service of those who suffer from Chronic Urticaria (hives). We strive to support and lift each other as a worldwide cyber-family. We share whatever needs to be shared to help one another in our struggle with Chronic Urticria. Any posting that is off the main topic of Chronic Urticaria, we post with a prefix of NCU -. This is done out of respect for those who do not wish to read such postings.

[Guest guest]

Hi Irene,

I'm so sorry to hear that your daughter is suffering like this. It's a scary thing to happen, especially when you're so young. I think we all agree here that it's one thing having this as an adult, but when it happens to children it's terribly cruel.

To answer your questions, I've had chronic urticaria for about eight years now. I never had it as a kid, although I couldn't say that whatever triggered it wasn't in my system when I was younger - that's something I'm trying to find out. When it comes to alleviating the symptoms of a bad angio attack, I'm afraid I can't seem to do much - I just tend to ride it out in bed or walk around in a bathrobe most of the time and keep a beady eye on impending anaphylaxsis, which does seem to accompany it in my own case. I did used to take showers with water that matched the temperature of my skin - anything hotter or colder and it went even more bananas - and it did help for a while but the skin can get pretty hot with angio so it wasn't a sensible long-term solution! I don't take prednisolone any more, although I've got bottles of the stuff downstairs. It didn't help with the itching and it couldn't stop the attacks coming, or do anything significant for the swelling. I don't have the angio episodes anymore too much these days, thank goodness, but I'm taking a lot of drugs (2 zyrtec, 4 zantac, 8 nalcrom, plus inhaler and epipen, rarely) so even though they don't stop it by any means, perhaps do stop it taking root more often to some extent. I can often stop the straight hives coming with the drugs, and even something as simple as going to the toilet can put an end to a hive attack, but angio - never. That'll always come if it wants to. Actually, I only ever seem to get the angio attacks these days when I have my period or a bad cold/infection of some kind, and they will usually last for as long as my period (or infection) does. With my period this can often be ten days, so I get the three day non-stop-can't-do-anything-about-it to start with, and then recurring attacks until I've stopped bleeding. I've also had five (poss 6) miscarriages, and without exception I've had dreadful angio with each of these, including fever and what seems like a permanent film of something slimy covering my skin. Definately not sweat - maybe leaking histamine or something! Sinus trouble is another one which always seems to invite angio along for the ride. I'm looking into all of these things. Also with the angio I get the 'hard' raised patches which are particularly irritating on the face, because they itch like you-know-what and hurt and sting like you-know-what, so you scratch them and they hurt, and you don't scratch and they hurt anyway!!! AAAARGH!

What's your daughter's doctor's take on everything she's going through right now? Has she been put on any medication, and have they run any tests yet?

Scotland

Re: Fair complexion - Question on Angioedema

! I know it's not to you, but it certainly is a relief to me that somebody has something so similar to my daughter's condition & is still writing to tell about it! What do you do to alleviate the symptoms? How often do you experience these episodes? Has it gotten worse or better over time (how long in between episodes - how long do they last?) Did you have it as a child? (My daughter is not quite eleven). Question (Guys might not want to read this one) - but is it at all related to female hormone cycle? (She may not be eleven yet, but she is very tall & physically maturing, so I thought maybe this new on-slaught (advancing from hives to angioedema) might be somehow tied into the hormonal changes). Irene ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~If you do wish to unsubscribe then you can click on the following link: <mailto:urticaria-unsubscribeegroups>~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~This list is in the service of those who suffer from Chronic Urticaria (hives). We strive to support and lift each other as a worldwide cyber-family. We share whatever needs to be shared to help one another in our struggle with Chronic Urticria. Any posting that is off the main topic of Chronic Urticaria, we post with a prefix of NCU -. This is done out of respect for those who do not wish to read such postings.

[Guest guest]

Irene:

I know it must be difficult for you to watch your child suffering with this.

She must be miserable with all the itching. the medications that she is on

is the same as all of us have been taking. Hopefully one of the combinations

will help. someone I know has a grandson who is having a problem with hives

and some swelling. He is 5 years old and is really doing a job on himself with

the itching. she was taking him to a chiropractor. (what that will do I dont know)

but I am curious and will find out what the result was. I live in NJ and she had

taken him to a dr. at New York Hospital. (dermatologist).

do you live in this area? I am also going to try a dr. in NJ who is suppose

to specialize in urticaria.

We have to keep our hopes up. I will keep in touch with you.

sandy

[Guest guest]

Hi, Sandy,

I live with my family in "upstate" New York -- about 2 hours 45 minutes north of the Big Apple....You must be recognizing my Jersey accent....Jersey is my home state. I haven't lived there for years (like, since Route 9 was a two lane road & there wasn't a concrete barrier running down the center!), but I still have family there.

I appreciate the information and the response that I've received leaving messages with this group. I don't have chronic urticaria -- just some environmental allergies (It's almost lilac season here -- close all windows, break out the inhalers!), and I never really understood how debilitating this can be until began to have episodes of real crisis....Up until recently, it seemed much more controllable (she responded better to meds, the outbreaks were milder & it didn't progress to the angioedema)....now, it is taking over her life.

I'm anxiously awaiting the test results from the blood work that she had. I don't really expect it to tell me what is going on - but I'm hoping it will tell me what it's not.

On my most recent trip to & Noble, I bought a book that includes a chapter on chiropractic treatments for reactions, but I must admit that I haven't read it yet. Since you mentioned this, I guess I'll curl up with the book and see if it offers any helpful insights. I'll be interested to hear how your friend's son does with this.

Thanks for your interest & support.

Irene

[Guest guest]

Irene Hi

Let me know about the book when you read it. Maybe there is some helpful information.

Does have urticaria? Was that the diagnosis? I am sure her blood work will

come out fine like all of us. Keep your chin up. We are all here to help one another.

Sandy

[Guest guest]

Irene Hi

Let me know about the book when you read it. Maybe there is some helpful information.

Does have urticaria? Was that the diagnosis? I am sure her blood work will

come out fine like all of us. Keep your chin up. We are all here to help one another.

Sandy

[Guest guest]

Irene Hi

Let me know about the book when you read it. Maybe there is some helpful information.

Does have urticaria? Was that the diagnosis? I am sure her blood work will

come out fine like all of us. Keep your chin up. We are all here to help one another.

Sandy

[Guest guest]

Hi, Sandy -

Yes, has had urticaria for about as long as I can remember, but the doctors had me convinced that it wasn't a big deal -- since she had allergies (to mold, dust, some food, all antibiotics), what would I expect, but a bunch of hives - so I thought tha we'd do our best to alleviate her symptoms - until now -- Now I want an answer - I don't think that angio is all that common in any kid -- her skin becomes extremely swollen, angry-red, extremely hot - "welty" any place that anyone touches on the inflamed skin - but the edges of it look like one really huge hive - Unfortunately for , while the hives can cover anywhere on her body - the angio is concentrated in her face (her whole face) and her hands (which really hurt her to move them) -

The angio is sudden in it's impact, and severe in its appearance. Before, with the hives, she'd be very spotty -- but now she looks like she just went 9 rounds between Tyson & Holyfield.

Because of the changes in the symptoms, her doctor suggested that any number of things could be causing this -- from lupus to connective tissue disease, to rheumatory arthritis to liver or thryroid problems, mastocytosis, etc. I don't know how any of this is connected - I almost feel like I should go back to school for this! All very scarey stuff - But, the truth is, he doesn't know, but he is acknowledging that this is from histamine - it's the generated from what that he won't speculate about. I saw my own doctor today who suggested that I just ditch the doctors here & go straight to one of the research clinics. (I had pictures of with me that I showed to him & he was horrified).

I thought things were going well today... got off to school with some hives and a slight pinky tinge to her face, but by afternoon, the school nurse was calling to report that was having another reaction. Another thing I'm really concerned about is the psychological toll this is taking on her. I don't want her to be convinced that this has to stop her life -- but she is terrified that she's going to die from this.

Still trying to put the pieces together.

Irene

[Guest guest]

Hi, Sandy -

Yes, has had urticaria for about as long as I can remember, but the doctors had me convinced that it wasn't a big deal -- since she had allergies (to mold, dust, some food, all antibiotics), what would I expect, but a bunch of hives - so I thought tha we'd do our best to alleviate her symptoms - until now -- Now I want an answer - I don't think that angio is all that common in any kid -- her skin becomes extremely swollen, angry-red, extremely hot - "welty" any place that anyone touches on the inflamed skin - but the edges of it look like one really huge hive - Unfortunately for , while the hives can cover anywhere on her body - the angio is concentrated in her face (her whole face) and her hands (which really hurt her to move them) -

The angio is sudden in it's impact, and severe in its appearance. Before, with the hives, she'd be very spotty -- but now she looks like she just went 9 rounds between Tyson & Holyfield.

Because of the changes in the symptoms, her doctor suggested that any number of things could be causing this -- from lupus to connective tissue disease, to rheumatory arthritis to liver or thryroid problems, mastocytosis, etc. I don't know how any of this is connected - I almost feel like I should go back to school for this! All very scarey stuff - But, the truth is, he doesn't know, but he is acknowledging that this is from histamine - it's the generated from what that he won't speculate about. I saw my own doctor today who suggested that I just ditch the doctors here & go straight to one of the research clinics. (I had pictures of with me that I showed to him & he was horrified).

I thought things were going well today... got off to school with some hives and a slight pinky tinge to her face, but by afternoon, the school nurse was calling to report that was having another reaction. Another thing I'm really concerned about is the psychological toll this is taking on her. I don't want her to be convinced that this has to stop her life -- but she is terrified that she's going to die from this.

Still trying to put the pieces together.

Irene

[Guest guest]

Hi, Sandy -

Yes, has had urticaria for about as long as I can remember, but the doctors had me convinced that it wasn't a big deal -- since she had allergies (to mold, dust, some food, all antibiotics), what would I expect, but a bunch of hives - so I thought tha we'd do our best to alleviate her symptoms - until now -- Now I want an answer - I don't think that angio is all that common in any kid -- her skin becomes extremely swollen, angry-red, extremely hot - "welty" any place that anyone touches on the inflamed skin - but the edges of it look like one really huge hive - Unfortunately for , while the hives can cover anywhere on her body - the angio is concentrated in her face (her whole face) and her hands (which really hurt her to move them) -

The angio is sudden in it's impact, and severe in its appearance. Before, with the hives, she'd be very spotty -- but now she looks like she just went 9 rounds between Tyson & Holyfield.

Because of the changes in the symptoms, her doctor suggested that any number of things could be causing this -- from lupus to connective tissue disease, to rheumatory arthritis to liver or thryroid problems, mastocytosis, etc. I don't know how any of this is connected - I almost feel like I should go back to school for this! All very scarey stuff - But, the truth is, he doesn't know, but he is acknowledging that this is from histamine - it's the generated from what that he won't speculate about. I saw my own doctor today who suggested that I just ditch the doctors here & go straight to one of the research clinics. (I had pictures of with me that I showed to him & he was horrified).

I thought things were going well today... got off to school with some hives and a slight pinky tinge to her face, but by afternoon, the school nurse was calling to report that was having another reaction. Another thing I'm really concerned about is the psychological toll this is taking on her. I don't want her to be convinced that this has to stop her life -- but she is terrified that she's going to die from this.

Still trying to put the pieces together.

Irene

[Guest guest]

-

To answer your question - my daughter had reactions to meds & foods, etc. when she was less than a year old. She always has had hive reactions, but when she was younger, the hives were more recurrent, but less chronic. By the time she started school, her symptoms progressed to where she actually missed more than 50 days of school in kindergarten (not even thinking about the weekends when she was too sick to play or the school vacations that weren't really vacations because she felt too badly - all the time - still treating this on an incident basis, but the hives became more of an "everyday" thing & I didn't insist that the doctor look at the "big picture" because it became the normal for to have hives & I'd only look for the "big" reactions - to be honest - I wasn't as smart about the whole thing as you are - I got her medical treatment, to be sure, but I never thought to ask more questions, get better info or really get educated in the way that you have (it's apparent from your correspondence) -- I believed the doctor when he said she'd outgrow it & to not worry about it -

I wish that I had been much more "on top of things" sooner -- A friend of mine (who also has chronic hives) was one of the first people to suggest to me that I needed to pay better attention to this & she was right -- My husband & I talked about what we could do to help through what I was still sure was something she'd outgrow -- part of our solution was to move out of our home - which was a hundred year old farmhouse - into a new "allergy" proof environment with a state of the art electrostatic air filtration system, hardwood floors, all new furniture so that we could put the protective coverings on all of the bedding to cut down on mites, etc. - got rid of all living plants in the common areas of the house (this was tough because my son is in school to be a landscape designer! -- the awful thing is that he's now doing "field study" and he has had periodic outbreaks of - guess what - hives and excema!) We've been in this house about 2 1/2 years - and she's had a decrease in her respiratory infections, but she's still got hives - and now the angioedema - so I guess the house & the plants may have been a partial solution, but certainly not for the hives & now the angio.

I wish we could have a crystal ball and know that the 's & Alana's of this would would have a "spontaneous amelioration of symptoms" - but, since my crystal ball is broken today, I'll just wish for good days when they can explore the world & have fun being kids and learn new things (without getting reactions from them!).... Thanks for your good thoughts.

Irene

[Guest guest]

-

To answer your question - my daughter had reactions to meds & foods, etc. when she was less than a year old. She always has had hive reactions, but when she was younger, the hives were more recurrent, but less chronic. By the time she started school, her symptoms progressed to where she actually missed more than 50 days of school in kindergarten (not even thinking about the weekends when she was too sick to play or the school vacations that weren't really vacations because she felt too badly - all the time - still treating this on an incident basis, but the hives became more of an "everyday" thing & I didn't insist that the doctor look at the "big picture" because it became the normal for to have hives & I'd only look for the "big" reactions - to be honest - I wasn't as smart about the whole thing as you are - I got her medical treatment, to be sure, but I never thought to ask more questions, get better info or really get educated in the way that you have (it's apparent from your correspondence) -- I believed the doctor when he said she'd outgrow it & to not worry about it -

I wish that I had been much more "on top of things" sooner -- A friend of mine (who also has chronic hives) was one of the first people to suggest to me that I needed to pay better attention to this & she was right -- My husband & I talked about what we could do to help through what I was still sure was something she'd outgrow -- part of our solution was to move out of our home - which was a hundred year old farmhouse - into a new "allergy" proof environment with a state of the art electrostatic air filtration system, hardwood floors, all new furniture so that we could put the protective coverings on all of the bedding to cut down on mites, etc. - got rid of all living plants in the common areas of the house (this was tough because my son is in school to be a landscape designer! -- the awful thing is that he's now doing "field study" and he has had periodic outbreaks of - guess what - hives and excema!) We've been in this house about 2 1/2 years - and she's had a decrease in her respiratory infections, but she's still got hives - and now the angioedema - so I guess the house & the plants may have been a partial solution, but certainly not for the hives & now the angio.

I wish we could have a crystal ball and know that the 's & Alana's of this would would have a "spontaneous amelioration of symptoms" - but, since my crystal ball is broken today, I'll just wish for good days when they can explore the world & have fun being kids and learn new things (without getting reactions from them!).... Thanks for your good thoughts.

Irene

[Guest guest]

Irene, my heart just aches for your daughter. The deepest fear I have in me is that Alena will battle this all through her school years. I am curious at what age did her urticaria start? I wish you both the best, I just know it hurts you to watch her suffer. Love, ~Alena's Mom

Re: Fair complexion - Question on Angioedema

Hi, Sandy - Yes, has had urticaria for about as long as I can remember, but the doctors had me convinced that it wasn't a big deal -- since she had allergies (to mold, dust, some food, all antibiotics), what would I expect, but a bunch of hives - so I thought tha we'd do our best to alleviate her symptoms - until now -- Now I want an answer - I don't think that angio is all that common in any kid -- her skin becomes extremely swollen, angry-red, extremely hot - "welty" any place that anyone touches on the inflamed skin - but the edges of it look like one really huge hive - Unfortunately for , while the hives can cover anywhere on her body - the angio is concentrated in her face (her whole face) and her hands (which really hurt her to move them) - The angio is sudden in it's impact, and severe in its appearance. Before, with the hives, she'd be very spotty -- but now she looks like she just went 9 rounds between Tyson & Holyfield. Because of the changes in the symptoms, her doctor suggested that any number of things could be causing this -- from lupus to connective tissue disease, to rheumatory arthritis to liver or thryroid problems, mastocytosis, etc. I don't know how any of this is connected - I almost feel like I should go back to school for this! All very scarey stuff - But, the truth is, he doesn't know, but he is acknowledging that this is from histamine - it's the generated from what that he won't speculate about. I saw my own doctor today who suggested that I just ditch the doctors here & go straight to one of the research clinics. (I had pictures of with me that I showed to him & he was horrified). I thought things were going well today... got off to school with some hives and a slight pinky tinge to her face, but by afternoon, the school nurse was calling to report that was having another reaction. Another thing I'm really concerned about is the psychological toll this is taking on her. I don't want her to be convinced that this has to stop her life -- but she is terrified that she's going to die from this. Still trying to put the pieces together. Irene ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~If you do wish to unsubscribe then you can click on the following link: <mailto:urticaria-unsubscribeegroups>~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~This list is in the service of those who suffer from Chronic Urticaria (hives). We strive to support and lift each other as a worldwide cyber-family. We share whatever needs to be shared to help one another in our struggle with Chronic Urticria. Any posting that is off the main topic of Chronic Urticaria, we post with a prefix of NCU -. This is done out of respect for those who do not wish to read such postings.

[Guest guest]

Irene, my heart just aches for your daughter. The deepest fear I have in me is that Alena will battle this all through her school years. I am curious at what age did her urticaria start? I wish you both the best, I just know it hurts you to watch her suffer. Love, ~Alena's Mom

Re: Fair complexion - Question on Angioedema

Hi, Sandy - Yes, has had urticaria for about as long as I can remember, but the doctors had me convinced that it wasn't a big deal -- since she had allergies (to mold, dust, some food, all antibiotics), what would I expect, but a bunch of hives - so I thought tha we'd do our best to alleviate her symptoms - until now -- Now I want an answer - I don't think that angio is all that common in any kid -- her skin becomes extremely swollen, angry-red, extremely hot - "welty" any place that anyone touches on the inflamed skin - but the edges of it look like one really huge hive - Unfortunately for , while the hives can cover anywhere on her body - the angio is concentrated in her face (her whole face) and her hands (which really hurt her to move them) - The angio is sudden in it's impact, and severe in its appearance. Before, with the hives, she'd be very spotty -- but now she looks like she just went 9 rounds between Tyson & Holyfield. Because of the changes in the symptoms, her doctor suggested that any number of things could be causing this -- from lupus to connective tissue disease, to rheumatory arthritis to liver or thryroid problems, mastocytosis, etc. I don't know how any of this is connected - I almost feel like I should go back to school for this! All very scarey stuff - But, the truth is, he doesn't know, but he is acknowledging that this is from histamine - it's the generated from what that he won't speculate about. I saw my own doctor today who suggested that I just ditch the doctors here & go straight to one of the research clinics. (I had pictures of with me that I showed to him & he was horrified). I thought things were going well today... got off to school with some hives and a slight pinky tinge to her face, but by afternoon, the school nurse was calling to report that was having another reaction. Another thing I'm really concerned about is the psychological toll this is taking on her. I don't want her to be convinced that this has to stop her life -- but she is terrified that she's going to die from this. Still trying to put the pieces together. Irene ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~If you do wish to unsubscribe then you can click on the following link: <mailto:urticaria-unsubscribeegroups>~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~This list is in the service of those who suffer from Chronic Urticaria (hives). We strive to support and lift each other as a worldwide cyber-family. We share whatever needs to be shared to help one another in our struggle with Chronic Urticria. Any posting that is off the main topic of Chronic Urticaria, we post with a prefix of NCU -. This is done out of respect for those who do not wish to read such postings.

[Guest guest]

Irene

's hives and swelling sound just like mine. Swelling with the hive.

How old is she?

I forgot what you told me.

Tell her she wont die from this. that there are alot of people who have the same condition and we are all trying to cope with it. I know its hard for a kid, almost not fair that she has to deal with this at her young age. Maybe we can find someone on here who is young and can

communicate with her. That might be helpful. I know when your face is swollen you dont want to be with anyone. I feel that way and I am an adult so I can image how she feels in front of her peers.

I am going to a new allergist next week. Hopefully he can give me a clue to what is going on.

Meanwhile, take care and keep in touch

Sandy

[Guest guest]

Irene

's hives and swelling sound just like mine. Swelling with the hive.

How old is she?

I forgot what you told me.

Tell her she wont die from this. that there are alot of people who have the same condition and we are all trying to cope with it. I know its hard for a kid, almost not fair that she has to deal with this at her young age. Maybe we can find someone on here who is young and can

communicate with her. That might be helpful. I know when your face is swollen you dont want to be with anyone. I feel that way and I am an adult so I can image how she feels in front of her peers.

I am going to a new allergist next week. Hopefully he can give me a clue to what is going on.

Meanwhile, take care and keep in touch

Sandy

[Guest guest]

Irene,

I have a question on your daughter falling. The reason I am zeroing in on that is because of the Adrenal fatigue possibility. I have had hives for 14 years and about two years ago I started falling. Getting dizzy and just falling. Then I began having black outs where I would just find myself on the floor, not knowing when or how i ended up there. What I did find out is that in addition to other things, I had adrenal fatigue. The doctor did a test for cortisol levels. What was happening to me is that over time my little adrenal glands would have to work so hard to help me deal with hiving that they would pump up and work hard, then they would work so hard that they didn't know how to stop working, so they worked all the time. That made me jumpy. No one could walk up to me without me jumping in fright. My family couldn't even have a conversation without me jumping or screaming quickly. I had also, by this time, contracted severe shaking. I couldn't even get a spoon of soup to my mouth without spilling it. I went to a neurologist because that should be my problem....well...I really don't want to go into all that but suffice to say...she sucked, and thank God I was fed up with doctors by that time and I was often the defient child and tell them they were full of crap. Anyway, she never ran any tests regarding my Adrenal problems. Never knew to wonder about those little babies on top of my kidneys. (Interesting side note: I have also had Kidney stones for years and now understand that the adrenal glands can provoke some type of overactivity).

So...my question....what else is wrong with her? Urt is a symptom. Has she been tested for all hormonal problems? Has she been on years of antibiotics?

Just wanted to share...

Patti