in november 2011 things started going down for poor bethany none of the creams where working and my daughter was having reactions left, right and centre. There was nothing i could do to get her better nothing was working i felt hopeless. Bethany was near enought continuously scratching and in pain so ended up being bandaged nearly the whole month it was the only way. the doctors changed her creams and things started gettin better by the end of novermber. we had noticed a pattern after about 2 to 3 weeks off her being on creams and medication she would grow immune to it so things where always up and down and creams and medicine was always changing but even though we went through about 5 other creams and a different medication it started to work so i was very pleased and y0u could tell a big difference with bethany by the end of the month. was hoping my daughter would finally get to enjoy her 2nd christmas
The next couple of months things where very tuff for me and my son to get used to our new way of life. No heating, No outings out like normal family's due to the heat and our regular source of heat was the hair dryer as Beth could not feel the heat. for months me and my son was very ill i had continuous tonsillitis and cheast infections and my son was always full of a cold and had very bad chest infections, due to my sons epilepsy he has a lower immune system than other children. We was regular visitors to my doctors but it was not for Bethany for once. I felt awful i was making one child better but the other one worse it was completely out of my hands
The creams worked for a while and then it was no longer sunny so things where a little easier but colder. if she would have a reaction to something that was it we were back to square one and sadly enough its a reoccurring thing . one minute beth will be sore and itcy (as above) and sometimes she would be a happy little girl. it felt like all my hard work creaming her every hour and giving her medication during the day and night was wasted. Eventually we knew things would change on a daily basis and to never expect to see her in the same condition you did before. i imagine life for my litle girl has been hard for her but her family love her dearly
Bethany finally went to see a specialist in st Thomas's hospital in London who diagnosed her with "photo aggravated eczema" before i was told my daughter had this very rare condition i never knew what it meant.The specialist told me my daughter was allergic to sun light and heat i was devastated. I thought to myself will my daughter ever live a normal life as she was allergic to something that could not really be avoided. He gave her a whole different type of creams including strong steroids
and special sun tan lotion. i knew from now on a drastic change was needed in her life to make her more comfortable. Bethany has been so good will all of her coniditions she has never lived a normal life so whats the difference to her.
When Bethany was a year and 10 months old it was my sons 3rd birthday things went from bad to worse. We tried to have a good day in Hastings even though neither me or my son or daughter felt to great but it was my sons 3rd birthday we wanted to make the most out of it. eventually we was on our way home and things started to get frightening. We was on the motor way home and i turned round my daughter was struggling to breath and suddenly went unconscious. i shouted at my mum and jumped out the car on the motor way i did not care about the traffic and managed to get her back with us. We was rushing to the nearest hospital but then it happened again she went unconscious so we pulled over and called an ambulance we picked her out of her car seat and she was floppy their was no life to her at all. i was screaming i did not know what to do it seemed like the ambulance was taking forever.
next minute she came around again ambulance turned up and they did not seem to understand what had been going on or believe that she had been unconscious twice as she was alert when they arrived they took us in the ambulance on non blue lights to the nearest hospital that's when things dramatically changed. I was holding her and then it happened again in the ambulance that was it blue light speeding, they took her off me strapped her to the bed. I could hear them using their radios saying code red code red time 10 minutes that was me crying and petrified.
We got out the ambulance and was rushed into resuss i have never seen so many doctors and nurses working on one person i was used to a and e not resuss. they was rushing around trying to bring her back .The doctor said to me that they may not have a choice but to stick her head in a box and a tube down her through as her oxygen levels where really bad. i remember saying do what you need to just save my daughter. Then after 3-4 hours in resuss my daughter was still ill but much better than when she came in her oxygen levels was not so low but not great and she was finally conscious.
Bethany was admitted to the children's ward for a couple of days and after everything it was found out my daughter had carbon monoxide poisoning and was lucky to be here today. i was so grateful for having my daughter here i couldn't have imagined it any other way. Me and my son was also in the property so we was made to go and have carbon monoxide testing and we had hardly nothing left in us not enough to harm us any way which was very lucky. They said Bethany suffered so much due to the fact she is so weak and prone to illness and her immune system is very low. My daughter survived i was exstatic!!!
(Above bethany happy and ready to leave hospital
Up from the time i put her on formula i tried her with all the brands and the stages and nothing seemed to make her happy she was still having the same issues. She now had started to scream in pain and by the age of 6 months, the doctors had sent her for tests and in fact she was allergic to milk which explained everything. i was told to change her to soya formula now, so thats what i did and i hoped all the problems would be over.
I noticed a few months later Bethany's skin was getting worse she was at
her doctors up to three times a week for different creams and anti
biotic
and steroids, and she was also seeing the dermatologist
frequently. She kept getting impetigo which made things a lot worse.we
had tried over 100 creams and bath ointments on her but nothing seemed
to be working. I had noticed that in the summer she got a lot worse
through out her whole skin problem she was a very tearful child who was
never happy i went back to the dermatologist and mentioned that the heat
seems to make Bethany worse. when i took her out in the sun she would
literately burn, have ashed and blisters on her body parts that was on
show to the heat. The dermatologist decided it was time to refer her to a
special heat dermatologist in st Thomas's hospital in London. i was
hoping now i would get some answers and something to make Bethany life
better for her as most of her time she was bandaged to prevent her
making her condition worse, it brought me to tears. she was not living a
normal life having to sleep in bandages, get up and be re bandaged etc.
the only time she was not bandaged was eating time eventually she had
to learn to eat and drink with them as even for a split second of them
being off she would scratch herself to the point of pain and it would cause upset for
all of us.
Bethany came down with chicken pox in march 2012. As her skin condition was getting so bad and the chicken pox where looking very infected i took her to the doctors who put her on anti tics and told me not to use any of her creams for a whole week i used the medication i was given but it was not working. Bethany was getting very sick the doctors advised for me to take her to a and e with a letter that he had written. She was admitted to hospital and i was told she had severely infected chicken pox and needed to be on close watch and iv fluids and anti bitotics. Bethanys problems where breaking my heart i would not leave her side she had severe temperature and had to have her obs checked every 2 hours then it went to four. After nearly a week we was told we could go home but then something went very wrong. She had swabs and bloods taken while she was in their regularly. Bethany was diagnosed with septacemia of the blood. they said to me she would be in hospital on double the amount of medication through iv and Bethany stopped eating and drinking so she was also put onto fluids. i just wanted to shake a magic wanted to make her better but i couldn't and it killed me. after 2 days Bethany started eating and drinking and things started to get better. the doctors re took her bloods and 2 days later she was discharged on oral antibiotics for another two weeks. Due to not being able to cream her and barely allowed to bandage her Bethany scratched so much that near enough all of her chicken pox will scar. As septicemia could kill i was relieved that the only long term effect would be scars.
(Picture to the left of bethany getting better)
