changes again!!

i have finally managed to get through to bethanys dermatologist and he has advised me to change her creams until she gets seen at great ormand street, at great ormand street they told me to change a few of her creams and he says that because three of bethanys medications where changed it could be effecting her badly. so i have great ormand street specialist telling me one thing and st helier specialist telling me another :( cant wait for her to get admitted she really needs some comfort and answers

I also want to thank everyone for your continuous support and kind words and thank our new members for joining in such a good cause. You are all amazing people and you all being a part of this group means so much to us.

heartbreaking moment

 Going to take my poor princess to the doctors today she seems to be getting worse rather than better and instead of it coming and going its been constant for days now :( it broke my heart this morning she said" mummy my face looks really horrible" i explain to her all the time she is beautiful but she is just too young to understand. she did not even want to open her eyes for her photo as she said "mummy i dont want any one to see my today"

she is just getting worse :(

(on 26th march)Princess is just getting worse. Her cheeks are swollen, shes not eating properly or sleeping properly. I just wish that she could have a day where her skin is ok and she is a happy little girl but its just not going away :(

so want something to keep this under control

(on the 25th of march)Bethany had a day full of flare ups today hoping great ormand street can give us something to get them under control its not nice :(

bad day of flaring

Poorly princess starting to flare. Shes so itchy :( but she wanted a photo with mummy as she knows she is my special little girl :) also after nursery i took a picture of her as they said she had been flared all day my poor princess can only hope that great ormand street find something to help these flares its really not nice :( poor baby girl

a lovely gift

( saturday march 23rd) Princess Bethany would like to thank Natalie from bijoux tutus for her gorgeous tutu she loves it :) we are so grateful for all the lovely donations that people give to Bethany your such amazing people :D

very itchy two days

(friday 22nd march) bethany has been so itchy the last two days tearing her forehead and behind her ears and her knees to shreads. she just cant stop herself bless her. When princess bethany started to flare i put her in her amazing suits that i brought from all the donations so Bethany would like to say thank you and as always with a big smile :D

great ormand street today

(on 20th march) great ormand street today and it went well. they listened to everything. Bethany has been sent for blood tests today as they are going to admit her after Easter to do loads of severe testing on her. So fingers crossed 

bad day at nursery

(on the 18th of march) Picked my princess up from nursery they said shes been flaring today and very itchy. Its since they dropped her hydrozine ive noticed the same at home great ormand street wednesday lets see what they say

i have had an idea

(on the 17th march ) I have decided that i am going to make a folder for bethany for when she is older about all the groups and the great support she has had. so when she is old enough to understand her conditons she can read it all. i am going to do a page just of comments that her supporters would like to say to her that she will keep with her forever. please comment on this status a message if you would like to be involved in her file:D great ormand street on wednesday :D:D

suits arrived

(on march the 16th) Beths suits arrived today considering i only ordered them yesterday thats brilliant :) so pleased thank you everyone that donated money to bethany for me to buy her the suits that she so desperately needs. lets hope that they give her some comfort to live a half normal and happier life :D

flare up

on the 15h of march Bethany flared up quite bad my poor little princess she felt very poorly and extremely sorry for herself

suits ordered

has just ordered bethanys body suits with the money that was raised for her. we are so great full and it will really help cant wait to receive them going to be looking online for special bedding and other stuff that she needs :D:D

i brought them off this site
http://www.everythingforeczema.com/

it also has other brilliant eczema stuff and is based in united kingdom i would advice if your child has eczema you should have a look :D. The company is also happy to help raise awareness for photo aggravated eczema and have said they will put the link for this group on some of there sites which is going to be a great help.

my friends at bamboo bubby

Made by my friends at bamboo bubby about bethany 

donations received

I just want to take time to thank scratch me not and bamboo bubby for there donations that we have received today all together they raised £269 pound for bethanys body suits. We are so excited and appreciate this so much and for everyone who helped donate the funds you have given my daughter a chance to have a normal life so a massive THANK YOU. We are waiting to buy the suits just waiting for an email from the company and we are all good to go :)

tearful and upset

on the 13th of march My poor princess has had one of them days today a sevire heat reaction which burnt her for ages and then that goes and about an hour after she has another one. Shes been a very upset and tearful little girl for most of the last two days just hope tommorrows going to be a better day for her :)

poser

Bethany asked me to take a picture for all her "friends" meaning all of you in her own words she said " take a picture like this for all my friends as im beautiful" love her so much. please continue to support and understand bethanys condition and if you are on facebook join in with our facebook group

https://www.facebook.com/pages/Support-Understanding-for-Bethany/273750466014879

dietitian

Have been to the dietitian they have said to keep her off egg,milk,cod,wheat,soya and peanuts for up to a year and see if any of that helps. Now i need to work out what food she can have as most food that does not have one of the foods in has one or more of the others in it. They want Bethany to go on vitamin tablets and to try her on oatly milk. Poor princess has so many allergies 

bethany feeling poorly

yesterday on the 11th of march when i picked Bethany up from nursery she was very upset and tired  i let her go to sleep for a bit she woke up and was screaming in pain her face was burnt it was horrible she said she felt really ill. me and Bethany had loads of cuddles in bed

mothers day

on the 10th of march Bethanys skin is still clear apart from her head which is extremely itchy and shes been tearing it to shreds. shes had a great couple of days. Its been so lovely beth is off to see the dietitian on Tuesday too see what she can advice. I had a lovely mothers day meal but unfortunately it got a bit warm and beths face started turning red and getting really hot. Happy mothers day to all the mummies on here :).

good times

on the 6th of march i am pleased to say due to the weather being very cold and horrible Bethany is having a good day today unlike yesterday when she burnt within two minutes of being exposed to the uv rays from the sun. its such a horrible thing watching your child burn in front of your face. so glad we have bad weather again :D. Bethany's new itchy spot is her scalp she has blood and scabs on her head but at least the rest of her is clear :D. We have heard from great ormand street and have her appointment on the 20th of march :D

a hot day

on the 5th of febuary i picked Bethany up from nursery and we got into nannys car to drive to pick her brother up from school. unfortunately the weather was really hot and sunny so within less than two minutes of being in the sun she started to burn. its not a nice thing having to watch your child burn in front of your face. we picked my son up and got her straight home and closed the curtains slightly so that the uv rays didn't hit her.

another burning night

on the 4th of febuary Bethany burnt again in her sleep. was so lucky that she slept through it though but she has been tearing her head apart and has blood and scabs on her head now.

bethanys new body suit

Finally bethanys body suit arrived lets hope it gives her some comfort

telling me her face was burning

on the 1st of feb Beth had a good day. She went to nursery and played with all her friends but had a heat reaction again while she was sleeping. she was not too happy and kept waking up saying she felt her face was burning and that it was too hot :( So pleased that her skin is clear we just need to sort these reactions out now. Back to specialist in a week but still nothing from great ormand street :(

fun times

Bethany loved spending the 28th of feb with mummy having loads of cuddles, playing games and taking loads of photos :D x

heat reaction but still smiling

little princess had a heat reaction on the 27th of feb. One minute she was fine and the next her face starting to turn red and itchy and got worse as i was looking at her. poor princess she never seemed too bothered though and still wanted to smile 

more money..

on the 26th of feb I am pleased to say bethanys special body suit is now in the country and at my post office after spending nearly between £40-£50 pounds for it they want a customs fee and handling fee of nearly £16 thats a lot of money for one body suit. The nhs wont pay for it so it looks like i have to come up with loads of money from no where to pay for something my daughter really needs. Bethany is still a happy little chappy and wanted me to take a picture of her "big smile and beautiful skin" her own words. 

happy times

today the 25th of feb i am pleased to say beths skin is still looking amazing shes still having the occasional heat reaction but she is loving telling people shes all better now. its lovely too see her having a big grin and to be proud of the way she looks

burning in her sleep

on the 22nd of fub Bethany had a really good day but at night while she was asleep i noticed her face was starting to burn. she kept stirring in her sleep and did not seem very comfy.