The Infection

Bethany has been scratching so much that she is so sore and has so many open wounds. Some of the open wounds are now infected and some are nearly there. Even when she is playing with her toys her skin is tearing and bleeding and making her so upset. emergency doctors appointment needed tomorrow not had so many smiles today.

blood and wounds

today Bethany is not in a great way. she was up all last night tearing herself to shreds. i went in there about 2 and there was blood everywhere she was just so itchy. Bethany now has so many open wounds and sores and she has made her fingers worse. my poor baby girl :(

Christmas brought us no luck

Bethany had a great christmas she is now very itchy and her fingers are cut open a long with her arms. Her fingers keep swelling. At least we had a good christmas and she got spoilt rotton x

Christmas eve and still suffering

Bethany has not been too great the last couple of days even up to today which is Christmas eve. Her fingers are sliced open and getting infected and she is also really red but due to the massive amount of pressies manta is bringing her she will be very busy and hope for a itch free Christmas . Thank you everyone for all your support this year and please keep supporting either by reading her blog or checking out the facebook page support and understanding for Bethany 

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

more cuts= more pain

Its just a never ending story for my girl. one minute she goes up then right back down. i just want my daughter to be pain free and live a normal life. will 2013 bring us any luck. i really hope so

so sore

yesterday Bethany was so sore it was really horrible for her too see. tearing herself apart and crying in pain and there was nothing i could do too help her 

finally a step forward

On the 18th December the doctors has finally given me some tubi fast garments to try and help Bethany get some comfort. lets hope they work shes been so sore and itchy something needs to help her.

things just change so quickly

 on the 16th of december Bethany had really been enjoying the day and last couple of days with me having family and fun times. It was so nice too see her so happy it made me so happy. I thought maybe this is it that we have cracked it before Christmas but thats where i was proved wrong. later than night Bethany started itching and was covered in a rash from head too toe. my poor baby girl was in pain once again. Her condition is just so unreliable and changes in like the click of a button. maybe Christmas wont be a pain free one this year

Shes still good

on the 12th of decemeber Bethany had a heat reaction to her face. She was not too great but other than that un till the 14th of decemeber she was really good.. so glad it was not warm. only problem is the rest of us were freezing as we couldn't have the heating on for long. its was a really hard day for the rest of us but we would do anything to make Bethany better and comfterble

Back to the dermatologist

Been back to the specialist this morning and she is very pleased at how Bethany is looking today. Bethany has been a lot better for the last couple of days am keeping my fingers crossed it stays that way for a while. We are continuing the same treatment as we have the last two weeks and back off for possibly another blood test and back to see the specialist again in a month :D x

Tonight's heat reaction

Tonight Bethany has had another reaction to heat on her face. It doesn't seem to be bothering her too much which is great and is not making her itchy. Tonight her skin has not reacted like it has for the last two nights which is a relief. Hopefully we can all get a good night sleep and that we are on the up wards spiral again. The thing is Bethany's condition changes so quickly and from one or two up to a ridiculous amount of times a day. When will things get easier for my little girl.

Nursery for Beth

Bethany has not had a great morning at nursery today has had to have her legs bandaged and cut her leg from scratching she has had a very horrible heat reaction on her face lets hope today gets better for my princess

Spoke too soon

Unfortunatly i spoke to soon Bethany has had another reaction exactly the same as last night she is very sore

Back to the doctors

Went back to the doctors with Bethany yesterday they have changed her anti-biotics and that seems to be fine for her no reactions :D She also had her blood tests that afternoon testing for allergies and she hated it. She screamed and screamed and screamed i hate having to put my babies through this but i know its the only way . Good news no other reactions today either :D

Poor Bethany's allergic reaction

On Wednesday night i gave Bethany her medication as usual but the doctor had put her back on antibiotics that day. 5 minutes after i gave her the antibiotics my poor girl because rashy, blotchy, red and very itchy.

A normal day in the life of Bethany

Bethany woke up this morning and tore her wrist open not a good start to a snowy day. Been back to the doctors they are sorry to here how Bethany has been up and down and have put her back on antibiotics due to her open wounds and the risk of infection. The doctors have agreed to prescribe SOME tubi fast garments but they are not sure how many they can on there budget and they don't have everything we need. Bethany has her blood allergy testing tomorrow so we will have the results of that by the week after when we see her specialist again.

Very tearful little girl

Bethany has had a really bad couple of days flaring up so many times all day and night. Last night and the night before she was up screaming because she was so itchy and all of today she has been so itchy i wish i could take away her pain. At nursery on Monday and Tuesday they have noticed that her skin has been quite bad and unpredictable. We have now decided to keep a diary at nursery of every time she flares and what she was doing at the time so get a better picture for the specialist.

A good day, but a really bad night

Bethany had a really good day up till about 7 pm last night when her face started flaring and she got very itchy. Bethany eventually went to sleep but not for long. I heard her screaming so run up stairs and she had taken her clothes off and tore herself apart. Beth seems to be drying up so quickly and one minute she was fine then she was itchy and covered in blood. Its so upsetting

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.