Re: Newbie - cold urticaria

[Guest guest]

Hi !!! My daughter has chronic cold urticaria among others. We live

in Cleveland and it has been a nightmare for her. She is 25 months old.

She had her first set of hives when she was 5 months old. She is allergic

to EVERYTHING!!! but the cold is very difficult for her. She gets hives,

itches, body aches, vomitting and extreme swelling. She is taking many

medications now and we don't take her out unless it is absolutely necessary.

I grew up in Minnesota ) my family is still there (in Litchfield) I am

sorry to hear that you suffer with this, I know it is a miserable thing to

deal with. How long have you had this? Are you taking any meds? I wish

you the best of luck and I hope you find some relief.

Newbie - cold urticaria

> I just found this site and am wondering how many

> people out there have chronic cold urticaria. I was

> recently diagnosed with this, and I live in Minnesota.

> Does anyone know of any support groups, or anyone who

> acutally has this who lives in a cold climate state?

>

> I would appreciate any information!

> Thanks!

>

>

>

> __________________________________________________

>

[Guest guest]

Danise -

Thanks for the information! I was just diagnosed this

week after having suffered through the coldest

December in the last almost 10 years in Minnesota. I

also have lots of other allergies, but my allergist

said that this isn't related to allergies, that it is

a separate issue. My husband thought that was odd,

since it all relates back to the histamine.

Personally, I am still looking for answers.

Luckily I have only had hives, swelling (especially in

my hands)and itching, as well as a rash on my face. I

have noticed that it has gotten worse over the past

several weeks. Today all I did was reach out to get

the mail and touched some snow and I got a welt on my

hand.

I can't imagine being a child and having this. I feel

so badly for your daughter having to deal with this at

2. I have two daughters (3 and 5) so I know what it

is like when they are that little.

The doctor is trying me on Zyrtec, as Claritin,

Hismanal, and Allegra aggravate my heart arrythmia.

He also mentioned Zantac as a possible secondary H2

medication.

I really love Minnesota and don't really want to move

away from my family, but since I know the cause of my

urticaria, and it can be more readily taken care of,

it seems stupid not to consider moving. But I wish I

could find someone else around here who has it as well

as a support group, and to see how they deal with it.

Have you heard of it going away at all? My allergist

didn't give me a lot of hope.

I hope your daughter does better in the New Year.

Thanks again.

__________________________________________________

[Guest guest]

DEar

My heart aches for you and your little baby girl. I can't imagine watching

your child in this miserable state. I am saying a prayer for you right now.

I hope your husband can find a good job in a warm climate. I live in

, Mn. Any of your family near here?

Jacquie

Re: Newbie - cold urticaria

>

>

> > Danise -

> > Thanks for the information! I was just diagnosed this

> > week after having suffered through the coldest

> > December in the last almost 10 years in Minnesota. I

> > also have lots of other allergies, but my allergist

> > said that this isn't related to allergies, that it is

> > a separate issue. My husband thought that was odd,

> > since it all relates back to the histamine.

> > Personally, I am still looking for answers.

> >

> > Luckily I have only had hives, swelling (especially in

> > my hands)and itching, as well as a rash on my face. I

> > have noticed that it has gotten worse over the past

> > several weeks. Today all I did was reach out to get

> > the mail and touched some snow and I got a welt on my

> > hand.

> >

> > I can't imagine being a child and having this. I feel

> > so badly for your daughter having to deal with this at

> > 2. I have two daughters (3 and 5) so I know what it

> > is like when they are that little.

> >

> > The doctor is trying me on Zyrtec, as Claritin,

> > Hismanal, and Allegra aggravate my heart arrythmia.

> > He also mentioned Zantac as a possible secondary H2

> > medication.

> >

> > I really love Minnesota and don't really want to move

> > away from my family, but since I know the cause of my

> > urticaria, and it can be more readily taken care of,

> > it seems stupid not to consider moving. But I wish I

> > could find someone else around here who has it as well

> > as a support group, and to see how they deal with it.

> > Have you heard of it going away at all? My allergist

> > didn't give me a lot of hope.

> >

> > I hope your daughter does better in the New Year.

> > Thanks again.

> >

> >

> >

> > __________________________________________________

> >

[Guest guest]

Hi ,

I can only imagine how hard it is to live in Minnesota with this!!!! We

live in Cleveland and the weather is MISERABLE. Sadly enough we just moved

here in June and my husband is looking for another job already so hopefully

our little girl can grow up somewhere that we can at least reduce some of

the meds shes on. She currently takes Zyrtec, Adarax, Zantac,

Cyproheptadine, Gasrocrom and somedays she also takes motrin. It seems

unbelieveable to me for her (25 months old) to be on this much. But it

works so I guess we have no choice. She has many allergies, we have found

even sun can cause her hives, however of all of her hive provokers I have to

say the cold is absolutely the WORST. We are so very afraid of her future.

She has been hospitalized 3x with major reactions to unknown things. She is

on and off steriods too. I guess we are really afraid all of this meds will

someday be no longer effective for her if she doesn't outgrow this. We have

been to allergists (latest one saying he had no idea how to help and to take

her to a hemopathic doctor) and also dermotologists. We had a fear of her

having either lupus or luekemia because they both run in my husbands family

but those tests were negative. She also tested negative for mastocytosis. It

is a strange mess and everyday is absolutely different. One day one thing

will make her hive out and the next it won't bother her at all.

Well, thank you for letting me vent. I have spent many sleepness nights

watching her and praying she would wake up without it but yet it never

happens. I think since her first onset of hives we have been told so many

things we don't know who to believe anymore. I know this much, my heart goes

out to you and anyone else suffering with this. I have cried, watched her

suffer, I have prayed, I have cursed, and I feel horrible having to make her

take so many medications. I think she takes more medications than she even

eats food. I have NO idea how we will ever be able to send her to school.

What part of Minnesota are you from? I have family all over that state. I

also have 2 other daughters, neither of which who have this. Kaitlin is 8,

Olivia is 5 and Alena is 25 months )

I wish you the best of luck with this, my prayers are with you!!

Re: Newbie - cold urticaria

> Danise -

> Thanks for the information! I was just diagnosed this

> week after having suffered through the coldest

> December in the last almost 10 years in Minnesota. I

> also have lots of other allergies, but my allergist

> said that this isn't related to allergies, that it is

> a separate issue. My husband thought that was odd,

> since it all relates back to the histamine.

> Personally, I am still looking for answers.

>

> Luckily I have only had hives, swelling (especially in

> my hands)and itching, as well as a rash on my face. I

> have noticed that it has gotten worse over the past

> several weeks. Today all I did was reach out to get

> the mail and touched some snow and I got a welt on my

> hand.

>

> I can't imagine being a child and having this. I feel

> so badly for your daughter having to deal with this at

> 2. I have two daughters (3 and 5) so I know what it

> is like when they are that little.

>

> The doctor is trying me on Zyrtec, as Claritin,

> Hismanal, and Allegra aggravate my heart arrythmia.

> He also mentioned Zantac as a possible secondary H2

> medication.

>

> I really love Minnesota and don't really want to move

> away from my family, but since I know the cause of my

> urticaria, and it can be more readily taken care of,

> it seems stupid not to consider moving. But I wish I

> could find someone else around here who has it as well

> as a support group, and to see how they deal with it.

> Have you heard of it going away at all? My allergist

> didn't give me a lot of hope.

>

> I hope your daughter does better in the New Year.

> Thanks again.

>

>

>

> __________________________________________________

>

[Guest guest]

Hi ,

I am sorry to hear about your daughter's CU. It is bad enough for adults,

but I don't know how a child can stand it. I live near Youngstown, Ohio and

I was wondering about where you take your daughter to the doctor. Do you go

to the Cleveland Clinic? Who is your doctor? My primary doc was going to

send me to CCF for a workup, but I have been doing ok lately with my meds. I

go to a very caring allergist in Warren, Ohio, but I am always interested if

there are any experts out there. There are quite a few of us from Ohio and

Michigan (Hi ), and maybe we can organize a meeting sometime. Hope

the new year brings some relief for you and your daughter.

Cara J. in Ohio

[Guest guest]

Hey , My heart was sad reading about your little darling. It's hard enough having URT, but for a child.... You stated you were worrying about the meds causing some type of effect on her. I think the hardest thing to handle about all of this is avoiding the depression, the wanting to hibernate, withdraw from doing whatever we really like. But, she is probably okay since she is too little to be sad over this. Children are so wonderful and any illness they get is so very sad. I also encourage you to keep checking and asking and asking about some type of hidden infection. After being at this for so long, I truly believe that there is a hidden something in us that may be harboring some infection. And, it seems odd to me that most of the cures of URT are around the mouth area. Teeth, sinus, etc.

Best of luck to your baby. Give her a big kiss from Patti in Pearland, Texas

[Guest guest]

Dear Hivey,

I just started back with the ICU group, and let me extend my deeptest sympathy to you and your little girl. I work in education and assess children for many things. I keep reading, for all of us with CU and other disorders, about an overload of antiobiotics causing problems. I have to run of to a conference, but you might check into the Yeast Defense idea, and see if any of it sounds like your situation. Look under Yeast, for Dr. Crook's website, and read it all but especially his section on children. God Bless. ( I didn't really hear the whole story, just a reply from someone to you) Good Luck!

in central Texas

[Guest guest]

Hi Patti, Thank you for being so sweet. A hug right back at ya from Cleveland!!! ) (Alena's Mom)

Re: Newbie - cold urticaria

Hey , My heart was sad reading about your little darling. It's hard enough having URT, but for a child.... You stated you were worrying about the meds causing some type of effect on her. I think the hardest thing to handle about all of this is avoiding the depression, the wanting to hibernate, withdraw from doing whatever we really like. But, she is probably okay since she is too little to be sad over this. Children are so wonderful and any illness they get is so very sad. I also encourage you to keep checking and asking and asking about some type of hidden infection. After being at this for so long, I truly believe that there is a hidden something in us that may be harboring some infection. And, it seems odd to me that most of the cures of URT are around the mouth area. Teeth, sinus, etc. Best of luck to your baby. Give her a big kiss from Patti in Pearland, Texas ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~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.