Bethany's Christmas message

Bethany asked me to take a photo of her with our finished Christmas tree that she helped me decorate to say Thank you and Merry Christmas to her supporters and followers .

Dry skin

Bethany's skin has been great compared to what she has been like the last couple of weeks. The only problem we have is shes drying up so quickly because of how drastic the temperature change is. She had a good day at nursery and has enjoyed putting up the Christmas decorations with me today. Shes had a couple of itchy moments today and flared a couple of times including once at nursery. I am just going to give my little princess and my little son the best Christmas ever and try and take their minds of there health issues. Not looking forward to Bethany's blood tests on Thursday  hate seeing her in pain she goes through enough. At least then we will then have some more answers about her allergies.

Bethany is a happy little girl

For the last couple of days things have been a lot easier for Bethany. The weather has been horrible which is great for us as she does not suffer so much. She has had a couple of itchy sessions when it getting warmer inside but other than that shes been a happy smiling little girl. It has been so nice to see Bethany have a bit of comfort and a minor break from her skin disorder. Unfortunately it comes and goes like a flash, so only time can tell how long this will last, and its different every time.

Been back to the specialist

As you are aware we went to see Bethany's Specialist today and things are not too great. She said that she could possibly have another extremely rare condition, as long with the one that she already has. Bethany is now also being sent for blood tests as they think she may have more allergies than she has got already. The creams have been kept the same for another two weeks but the antihistamine has been changed. She would like to see us in another two weeks when she has the results of the blood tests and take it from there. All the pictures that I take of Bethany's condition I show to the Specialist, she is very shocked at how much she can change just in one day and how severely she is reacting to certain heat sources. I feel very upset for Bethany today, we want things to get better for her not worse. Maybe that's not going to be the case people keep your fingers crossed.

Bethany's had a reasonably good day but not a good night

Today Bethany has not been as bad as she has been this week. She has been itchy and had one reaction to heat during today, but for Bethany that is still very good. She has been spending a lovely day with her family at nanny's house playing with her cousin and has not needed to be bandaged as yet. I am pleased to say her infections have gone and her wounds were starting to heal again until about 5 minutes ago when she ripped her chin open again ,her hands and feet then started burning and have turned bright red. Unfortunately She has also had an allergic reaction to something as her stomach is also swollen, rock hard and covered with eczema. At least its been a good day but maybe not such a great night ahead of us. I think it will be best for me to bandage her tonight just in case she decides to scratch in her sleep and make things worse. Bethany is back of to see the specialist tomorrow to give them an update and see what they suggest for her treatment for the next couple of weeks. I will keep you all posted as I always do.

Behaviour problems

On the 23rd of November Bethany had to be bandaged,aswell as  all day yesterday and nearly all morning today .She has been very sore and I am  going to see how long she can be comfortable and stree free without the bandages on. At this precise moment  she seems a little less itchy. For most this afternoon Bethany has been suffering and very irritable. Her behavior has turned into attention seeking, due to spending so much time with me, because of how bad her condition has been. She has been crying ,shouting and moaning for about 4 hours all together today i hope she suffers less and her behaviour changes.

Out of control

On the 22nd of November Bethany was still suffering so much even though we had done everything that we could for her but unfortunately nothing was working. I feel at a loss, its not an easy illness to deal with, as it reoccurs all the time, or does not go away at all . No matter what creams and medication Bethany has been prescribed she always seems to end up back to where she first started. So far Bethany has been on antibiotics for nearly a month and the infection has started to decrease. Bethany's infection will soon return because of the amount that she has scratched today and torn open her skin. When will her personal suffering ever end ?  To date we have used    about 100 different creams  and nothing seems to work for longer than a few days. We have used over the counter creams, advised creams,creams from specialists and doctors. When will they find a cure for such a painful and heartbreaking condition?. (She still wanted to smile for her followers she is just so brave)

On and off all day

On the 20th of November 2012 Bethany's reactions have irritated her so much today that she has torn her chin open once again. We have been applying creams all day, but to no avail, just in the hope it decreases a little bit by bed time. This aggravation and soreness will mean that she will have a very disturbed night.

Itchy eyes

On the 20th of November Bethany's eyes where very swollen , red and very itchy. Today the rest of her skin problems did not seem to bother her.

Off to the GP

On the 19th of November Bethany was having a better day. Her antibiotics have once again been changed by the Doctor. Today I made another emergency Doctors  appointment, as the infection was not clearing and Bethany was not due to see the specialist until after the 26th November.The GP has put her on different antibiotics for just one week. I am smiling today and so happy as Bethany only has a few patches on her arms, fingers and chin . This is a great improvement on the last few weeks for her, but we still need to get the infection under control.  

Her skin was burning

On the 16th of November Bethany was suffering again today,she seems to have become immune to her new creams and antibiotics . Her fingers have swollen and burning.  By midday today Bethany was continually upset as she was just very sore, itchy and extremely red.  Her skin felt like it was on fire not a good day. I just wanted to cry for her but i had to be strong.

A bit better today

Still on the 14th of November Bethany is a lot better during the day ,due to her antibiotics and new creams working, lets hope it lasts. Bethany even wanted to show her appreciation to her Facebook supporters on Support & Understanding for Bethany. But at bedtime Bethany was burning in her sleep, she was really suffering .

Thank you Sharps

On the 14th of November Bethany's life was made a bit easier by the Company SHARPS bedrooms and home office, who presented Bethany a donation of money ,they raised from a cake sale and other events , for us to buy Bethany a body suit to help her try and have a normal day to day life. The body suits are very expensive as are between £70-£100 
A Big Thank you from Bethany and myself to SHARPS

Bethany had a good hour

Still on the 12th of November, Bethany had a good hour out of the whole day. This is what my princess can look like without all the cuts, grazes, infections and redness.

Back to the specialist

On the 12th of November 2012 we was back at the specialists with an emergency appointment as Bethany's skin was spiralling out of control she had infected fingers that she could not even move, infected chin and infected arms. No matter what i was doing it just was not helping her. The specialist said that Bethany needed to go on more antibiotics which she had already been on for about three weeks and switch the creams to a very high steroid and a different moisturiser as her skin was drying up so quickly. We was back to square one that day Bethany was just in so much pain having reactions all day i just felt completely useless.

So dry but why

On the 6th of November 2012 it was a hell of a day Bethanys skin took all sort of turns she was bandaged all day and creamed regularly with moisturizers and steriod creams but nothing seemed to be working. One minute her skin was all dry and crusty and falling off it was horrible then it was all dry and her cuts on her feet and chin didnt help. It made no sense though as she was creamed so much she shouldnt have been so dry. At this point im all out of ideas back to the specialist

Bandaged every day for about two weeks

Bethany's been a bit up and down  and so had my son with his illnesses from the 23rd of October 2012 till the 6th of November 2012. Bethany has been really suffering with her skin for about two weeks and is now having to be bandaged all day every day she has impetigo again and having regular trips to the doctors for different creams and medication as nothing seems to be working. i wish i could take away her pain away no one deserves to go through this.

Bethany's playdate

on the 30th of October 2012 we had friends round to play but unfortunately Bethany was in such a bad way she had been bandaged for a few days continuously so she found playing wither her friend and brother very complicated. But she was in such a bad way her arms and legs and chin was torn to shreds. Try telling that to a 3 year old though poor thing doesn't understand shes not pleased with me today. (Bethany will near enough always be happy and smile for a photo she just loves the attention)

What a great month we had

Between the 23rd of November and the 23rd of October Bethany's skin had been great apart from her having her allergic reactions but her skin has been good and kept under control it has helped that it been cold. But today that changed and she went from good too bad. It was so quick and out of the blue everything was going to well.

Our day to Brighton

On the 27th September 2012 we went to Brighton we was lucky because it was not a hot or warm day which was a relief. She really enjoyed herself shopping, playing on the pear and even went in the sea life center she didn't want to leave i am just so glad we went on a cold windy day so she didn't have a bad skin reaction that is just pot luck. Bethany loved her new presents and enjoyed spending quality time with her nanny, mummy,daddy and brother.

Bethanys birthday party

22nd September 2012 was the day of Bethany's birthday party and her skin was good again. it did get bad but we managed to get it better again. She had an amazing day with all her friends and family outside in the garden but there was only one problem for some of it it was warmish then turned cold so i was worried her skin was going to come up. she was amazing through her whole party apart from the couple of hours she fell asleep. Bethany had too much distraction and too many people around her that would not let her scratch so all in all it was a good day but that night Bethany did suffer a bit because the heat had picked up and no matter what windows i had open and the fan on it still was not enough.

Bethany's birthday

8th September 2012 was Bethany 3rd birthday and her skin was brilliant.I am so pleased so that she could enjoy her birthday party with all her family without being in pain. She had such a great day and loved opening all her presents. She was looking forward to her birthday party with all her friends and family on the 22nd of September lets hope her skin stays good so she can enjoy her party.

Good and Bad

In August 2012 Bethany had been completely up and down but when shes been good shes been amazing when shes been bad shes been really bad. The hospital changed her creams and medication and they seem to be working on and off which is giving her a bit of comfort

Heat reaction

On the 24th July 2012 Bethany had a nasty reaction again to the point her face is like a beetroot and her eye lashes are bright white and with the cuts and slices on her arms and feet infected again it feels like things will never get better. 

Bethany covered in blood

On 21st July 2012 Bethany had been extremely itchy and was in a rough patch again. Trying to get her skin back to something comfy for her is proving very difficult to the point that shes ripping herself and making herself pour with blood. shes even worked out how to bite the bandages off which is not a good thing. What to do now!!

Bethany on her brothers birthday

On the 5th of July 2012 Bethany was trying to enjoy her brothers birthday party at the farm but was really burning from the heat. She did try and keep a big smile on her face even though she was bandaged and in so much pain shes such a little fighter

Bethany looses her independace

On the 4th of July 2012 Poor Bethany was going down hill again :( wripping herself to shreds and in so much pain I felt so useless that there's nothing I could do to help her she couldnt even walk its so heartbreaking seeing her like that and how her independance is taken from her. Bethany is always one who likes her independence but instead she needed carrying everywhere and to be bandaged completely.

Bethany's ups and downs

Since Bethany had her chicken pox and septcemia her skin has been quite hard to control she keeps getting impatigo and other infections.she has been to her dermatologist who changed her creams back to strong steroids and antibiotics but no improvement she is still very itchy and very un comfterble. We have another appointment on Monday with the dermatologists she just looks so unconformable and is very upset and aggitated. I just can not seem to get her into a better way no matter how hard im trying its a horrible feeling :(

Bethanys behaviour issues

Due to bethany having so many illness her behavior is so bad and a massive issue. Bethany last summer had to be creamed every hour and have night creams and medication, was medicated most the day and had her bandages re done near enough every 4 hours so she was used to a large amount of my attention. now the specialists have given me creams and medication that i don't have to give her so much shes not liking having less attention than before. All day bethany will scream and shout and she will never sleep i guess that's just the life for us she was so used to the attention from being so ill but who can blame her i guess?

update from the dermotologist

We went to see the dermatologist and they could not believe that she was still in a really bad way after all the antibiotics she had been on for nearly a month and all the different new creams. She called in another dermatologist to help her make a decision. The decision in the end was that they needed to change her creams to a much higher steroid and that she needed to change anti biotics yet again. They also now think she could be allergic to rubber which doesn't help anything but i am hoping not but we will have to wait and see. We have another appointment on the 25th of june which is a lot more regular than usual, they usual see her every 6 months

mixture of problems

Today has been a day and a half i tell you. Bethany's skin has changed so much even in one day its crazy i have noticed as its getting colder outside the warmer it makes it feel inside which is making Bethany burn within minutes sometime even seconds. Bethany's been bandaged today her skin has gone so dry even though shes been creamed so much and she has cuts all over her legs